Dis Breast Cancer Survivors Part IV - GAGWTA

[luvmarypoppins]

Well the New Year isn’t starting off the way I envisioned. My pcp canceled my visit yesterday. I begged to see some dr. because my leg was swollen black and blue, puffy ankle, discolored toes etc. Had 2 np’s and a dr. Look at it . Wanted me to go to er.
Ds3 called his friend and she said 40 patients were in er. Lots of covid so no to that. We called vascular surgeon, Nice to squeeze us in yesterday. Had 2 tests. Saw np. No blood clot but now I am having the aortic ct tomm to make sure it’s ok. Having the neck sono for cancer check too. The np also said to go see this cardiologist she referred me to.
Then tues I have to see the vascular surgeon to go over the results.
Then the next week the rescheduled pcp visit with the real pcp and cancer check up with the endo.
Finally on the 26th is the new cardiologist.
Happy medical month to me lol!
Ds3 said the hospital is maxed out. No beds, over 200 covid patients etc. It’s so bad here. Our county has the highest rate in the state.
GAGWTA. Hope you are all doing well. Be safe!

 

[snappy]

LMP, sorry you are having issues with your leg. You are wise to avoid the ER. Good luck this week and keep us posted.

We are safe, thank God. Our older daughter and her BF who live in NYC tested positive 2 days after Christmas so that upended our visit. Luckily, they are feeling fine (no symptoms except being tired). And also luckily, we had 2 days of good fun, Christmas Eve and Christmas Day before they tested (they were going to see my mom). That visit didn’t happen of course, although my brother who was on the same plane coming down here from NYC did test positive last Tuesday. He is back home and recovering, still a bit sick, but not bad. He too is tired but he thinks it might be because of the 8-9 days he has isolated. For the life of me, I can’t figure out why my husband and I, our other daughter, our son, and my sister and her husband did not come down with covid. We have all tested at least 2 times, some more than that. So far.

Hope everyone else is doing ok.

GAGWTA!

 

[Pea-n-Me]

Probably that natural immunity plus your vaccinations, snappy!
Lmp, praying your testing all goes well. Don’t like the sound of that leg and foot!
I’m in the same situation as your DS3. It’s rough in the hospitals right now.
Hope everyone here had nice holidays. Love to you all.

 

[luvmarypoppins]

Some good news from the surgeon today. He said my aortic graft is doing well but he says there is too much fluid in my legs/feet and my bp Is too high so most likely I need a medication adjustment. This will be through my pcp and or/maybe new cardiologist.
I really don’t like when they fool around with my meds because I am so sensitive and reactive to everything.
And in other news…
Dil2 dad will most likely start kidney dialysis soon.
Her sister who lives at home with her parents just got covid, Their whole family is unvaccinated sigh.
Her aunt fell yesterday and needed emergency brain surgery. She is in ICU. Ds couldn’t check on her because he had too much covid Ppe on.
Then dil1 mom got covid while in the rehab for a broken leg. She is still there but seems a little better and now her middle sister is on the verge of a divorce and there was some talk of sister coming to live with her and ds2. Omg!
Now I just got an email from my Disney loving cousin said his daughter’s family all got covid and yesterday his wife fell and broke her ankle.
Only 30 days left in January. Thanks for letting me whine.
GAGWTA

 

[#1hoosierfan]

May I join your group? I was diagnosed the beginning of November with an approx 7 cm lobular tumor in the right breast. Had an MRI of right breast and there is a cancerous tumor in that breast too that mammogram did not pick up. They tested one node of the left side and it was positive.
I had CT and PET and they show no other tumors in the body.

They placed a port in November with plan to start chemo the end of November. Then I came down with horrible pain in my right leg at the end of the month and could not move it. I was admitted to the hospital. Took a few days to figure out was was wrong (so many tests) and I had MRSA of the blood. They took the port out to be safe ( good thing, it was MRSA positive) and surgery to clean the fluid filled with MRSA of my knee.

Due to start chemo a week after dismissal. Then I had a fever. Landed me in the hospital for 5 days while they doubled me up antibiotics. Had a terrible reaction to vancomycin. They was a fun week of scratching myself practically to death. They put in a PICC line to be able to start chemo.

I am now waiting on a blood culture to make sure the MRSA is gone ( finished 6 weeks of IV antibiotics yesterday) and they will place another port.

I am now 4 rounds into 12 total of Taxol. Then I will have 8 weeks (4 infusions) of AC. Then mastectomy, then radiation.

Im tolerating the Taxol well. Dry skin and fatigue are my only complaints right now.

I’m an elementary teacher, and I chose to take the rest of the year off. My job has me up and moving and up and down stairs a lot, and along with the germs, I thought it was best.

Thank you for reading. I look forward to getting to know you, and wish you only the best.

 

[Pea-n-Me]

Some good news from the surgeon today. He said my aortic graft is doing well but he says there is too much fluid in my legs/feet and my bp Is too high so most likely I need a medication adjustment. This will be through my pcp and or/maybe new cardiologist.
I really don’t like when they fool around with my meds because I am so sensitive and reactive to everything.
And in other news…
Dil2 dad will most likely start kidney dialysis soon.
Her sister who lives at home with her parents just got covid, Their whole family is unvaccinated sigh.
Her aunt fell yesterday and needed emergency brain surgery. She is in ICU. Ds couldn’t check on her because he had too much covid Ppe on.
Then dil1 mom got covid while in the rehab for a broken leg. She is still there but seems a little better and now her middle sister is on the verge of a divorce and there was some talk of sister coming to live with her and ds2. Omg!
Now I just got an email from my Disney loving cousin said his daughter’s family all got covid and yesterday his wife fell and broke her ankle.
Only 30 days left in January. Thanks for letting me whine.
GAGWTA

Sounds like things are busy for you! Glad things went well. You’re watching your sodium intake, right?

 

[Pea-n-Me]

May I join your group? I was diagnosed the beginning of November with an approx 7 cm lobular tumor in the right breast. Had an MRI of right breast and there is a cancerous tumor in that breast too that mammogram did not pick up. They tested one node of the left side and it was positive.
I had CT and PET and they show no other tumors in the body.

They placed a port in November with plan to start chemo the end of November. Then I came down with horrible pain in my right leg at the end of the month and could not move it. I was admitted to the hospital. Took a few days to figure out was was wrong (so many tests) and I had MRSA of the blood. They took the port out to be safe ( good thing, it was MRSA positive) and surgery to clean the fluid filled with MRSA of my knee.

Due to start chemo a week after dismissal. Then I had a fever. Landed me in the hospital for 5 days while they doubled me up antibiotics. Had a terrible reaction to vancomycin. They was a fun week of scratching myself practically to death. They put in a PICC line to be able to start chemo.

I am now waiting on a blood culture to make sure the MRSA is gone ( finished 6 weeks of IV antibiotics yesterday) and they will place another port.

I am now 4 rounds into 12 total of Taxol. Then I will have 8 weeks (4 infusions) of AC. Then mastectomy, then radiation.

Im tolerating the Taxol well. Dry skin and fatigue are my only complaints right now.

I’m an elementary teacher, and I chose to take the rest of the year off. My job has me up and moving and up and down stairs a lot, and along with the germs, I thought it was best.

Thank you for reading. I look forward to getting to know you, and wish you only the best.

Of course you can! Welcome! The group no one really wants to be in, lol.

Your story sounds almost exact to that of a friend of mine who I was close to during my time of diagnosis and treatment. She said her tumor was like the size of an egg. She had four little kids at the time. And happy to report that almost 20 years later, she’s still doing really well! I looked up to her so much as she was ahead of me in treatment and was so strong! I always liked good stories like that, so hope you don’t mind me sharing. It sounds like you are doing well despite all you’ve been through already! Wow! I wound up not doing a port or PICC because of problems I’d seen with them. It was a pain having an IV put in every time for chemo, but it worked out ok. I received the AC and taxol, and did surgery and radiation, as well. My surgery was done first, though. Also doing well after 18 years (diagnosed in 2003). Back when we first started this thread in 2005, many of us were still at the beginning of our journeys. It is nice to have people to chat with who understand what you’re going through. Glad you’re here and hope others will chime in, too.

 

[ZellyB]

May I join your group? I was diagnosed the beginning of November with an approx 7 cm lobular tumor in the right breast. Had an MRI of right breast and there is a cancerous tumor in that breast too that mammogram did not pick up. They tested one node of the left side and it was positive.
I had CT and PET and they show no other tumors in the body.

They placed a port in November with plan to start chemo the end of November. Then I came down with horrible pain in my right leg at the end of the month and could not move it. I was admitted to the hospital. Took a few days to figure out was was wrong (so many tests) and I had MRSA of the blood. They took the port out to be safe ( good thing, it was MRSA positive) and surgery to clean the fluid filled with MRSA of my knee.

Due to start chemo a week after dismissal. Then I had a fever. Landed me in the hospital for 5 days while they doubled me up antibiotics. Had a terrible reaction to vancomycin. They was a fun week of scratching myself practically to death. They put in a PICC line to be able to start chemo.

I am now waiting on a blood culture to make sure the MRSA is gone ( finished 6 weeks of IV antibiotics yesterday) and they will place another port.

I am now 4 rounds into 12 total of Taxol. Then I will have 8 weeks (4 infusions) of AC. Then mastectomy, then radiation.

Im tolerating the Taxol well. Dry skin and fatigue are my only complaints right now.

I’m an elementary teacher, and I chose to take the rest of the year off. My job has me up and moving and up and down stairs a lot, and along with the germs, I thought it was best.

Thank you for reading. I look forward to getting to know you, and wish you only the best.

Sorry that you find yourself needing to join this group but welcome. That sounds like a very rough start, but glad that they seem to have you on track and receiving treatment. Also good to hear that you are tolerating the Taxol well. Keep us updated on how you are doing and for support.

 

[snappy]

May I join your group? I was diagnosed the beginning of November with an approx 7 cm lobular tumor in the right breast. Had an MRI of right breast and there is a cancerous tumor in that breast too that mammogram did not pick up. They tested one node of the left side and it was positive.
I had CT and PET and they show no other tumors in the body.

They placed a port in November with plan to start chemo the end of November. Then I came down with horrible pain in my right leg at the end of the month and could not move it. I was admitted to the hospital. Took a few days to figure out was was wrong (so many tests) and I had MRSA of the blood. They took the port out to be safe ( good thing, it was MRSA positive) and surgery to clean the fluid filled with MRSA of my knee.

Due to start chemo a week after dismissal. Then I had a fever. Landed me in the hospital for 5 days while they doubled me up antibiotics. Had a terrible reaction to vancomycin. They was a fun week of scratching myself practically to death. They put in a PICC line to be able to start chemo.

I am now waiting on a blood culture to make sure the MRSA is gone ( finished 6 weeks of IV antibiotics yesterday) and they will place another port.

I am now 4 rounds into 12 total of Taxol. Then I will have 8 weeks (4 infusions) of AC. Then mastectomy, then radiation.

Im tolerating the Taxol well. Dry skin and fatigue are my only complaints right now.

I’m an elementary teacher, and I chose to take the rest of the year off. My job has me up and moving and up and down stairs a lot, and along with the germs, I thought it was best.

Thank you for reading. I look forward to getting to know you, and wish you only the best.

Glad you found our group. You have been through a lot in 2 months.

Glad you are tolerating the Taxol so well. I think you made a wise choice to take the rest of the school year off. Treatment takes its toll, even if chemo is not involved. I am almost 17 years out from major DCIS and a small area of invasive cancer. I did not have chemo but did have a mastectomy followed by flap surgery 2 years later for reconstruction. I was 50 at diagnosis, and found this thread at its inception in 2005. It has been a great source of info and especially comfort over the years. Please feel free to ask questions, vent, or just share. All of that is welcome. I hope you have a good face to face support system, and we can be a virtual one.

 

[CaleCakes]

Debated whether or not to post, but I read back several pages and feel comfortable exposing my newly found vulnerability.

My nightmare began back in October 2021 when I was called back for a second screening following a routine mammogram. I was told after the screening that something is in my right breast but it's "not suspicious enough" to biopsy. Something about those words did not sit well with me. I went for a second option, had another mammogram in November followed by biopsy the week before Thanksgiving. The day before Thanksgiving the doctor covering for my gyn called with the news. The cells are consistent with breast cancer. The doctor refers me to a surgical oncologist. I met my surgical oncologist the first week of December. She told me the diagnosis is invasive ductal carcinoma and it is triple negative. While at her office I did the genetic testing, signed for a lumpectomy and possible port placement. The genetic testing results came back about a week later and she called me right away. I have the BRCA 1 gene mutation.

So now the plan changes. She refers me to a plastic surgeon since now that I am brca positive and the recommendation is prophylactic double mastectomy, she wanted me to have reconstruction options. While waiting to see the chemo doc and radiation oncology I saw the plastic surgeon. I also saw a gyn oncologist since it is also recommended to have my ovaries removed. Panicked with the hysterectomy option and decided to put that off a bit since as of right now I don't have any questionable cells in that area. Saw radiation oncologist and she was optimistic that I will not need radiation. Saw chemo oncologist and she gave me the regiment should the mass measure over 5mm at final pathology. It measured 7 on mammogram and 1.1cm on mri- oh yeah somewhere between surgical oncology and Christmas I had an mri.

Next new plan was to have a double mastectomy with diep flap reconstruction. It was scheduled for 1/17. Tomorrow. I had to have a CT scan angiography to map out blood vessels for the reconstruction. The scan showed a legion on my pancreas, about 1 mm. And a 3 mm kidney stone (but no one cares about that in all this). So now the plan changes again.

Last week I had a lumpectomy with sentinel node dissection. Doc took 5 nodes. I was surprisingly calm going into it, recovered quickly from anesthesia, and was feeling energetic almost giddle by the evening. I have no soreness and didn't need to take any medications. I do not like to take medications. I saw a pancreas oncologist last week and I will have an endoscopic biopsy this week to see what the heck that legion is. I am terrified by what it might be.

Friday the surgeon called me to her office to discuss the pathology report from the lumpectomy. It was not the absolute final report but she was confident enough to share the lump measures 1.2 CM, had clear margins, and the lymph nodes were clear. I felt like that was good news, until she said I will still need chemo. She plans to put the port in next week. Maybe I wasn't listening well or maybe I am getting confused, but why do I still qualify for chemo if it appears the cancer is out, and I'll be have the double mastectomy anyways? Is it because it's triple negative? I am absolutely terrified to have the port placed and to have chemo. I do not like taking medications and this is complete toxicity. I put a message on the portal to talk to her again. I am just so nervous. I am scheduled to see the chemo doc this week as well. I believe the regiment she is planning is cytoxan and adriamycin every 2 weeks for 8 weeks, then taxol weekly for 12 weeks. I've had the echo already to make sure my heart is strong enough. So that's 20 weeks of chemo then the double with reconstruction 6 weeks after that.

I am mostly upset for the people around me having to deal with my while I go through this. I am the planner, the organizer, the glue that holds it all together. I don't have down time, I don't even like to relax. I am mostly scared for my kids, 6 and 4, to have to watch me go through this. Earlier today they were brushing me hair sort of randomly and I started to cry. DS6 got nervous and went to get "help". I felt just terrible and I cry just thinking them being upset. I have told very few people, some family and a few friends. For me I need to do this a quietly as possible but lately I am a mess emotionally.

 

[3threebabies]

Debated whether or not to post, but I read back several pages and feel comfortable exposing my newly found vulnerability.

My nightmare began back in October 2021 when I was called back for a second screening following a routine mammogram. I was told after the screening that something is in my right breast but it's "not suspicious enough" to biopsy. Something about those words did not sit well with me. I went for a second option, had another mammogram in November followed by biopsy the week before Thanksgiving. The day before Thanksgiving the doctor covering for my gyn called with the news. The cells are consistent with breast cancer. The doctor refers me to a surgical oncologist. I met my surgical oncologist the first week of December. She told me the diagnosis is invasive ductal carcinoma and it is triple negative. While at her office I did the genetic testing, signed for a lumpectomy and possible port placement. The genetic testing results came back about a week later and she called me right away. I have the BRCA 1 gene mutation.

So now the plan changes. She refers me to a plastic surgeon since now that I am brca positive and the recommendation is prophylactic double mastectomy, she wanted me to have reconstruction options. While waiting to see the chemo doc and radiation oncology I saw the plastic surgeon. I also saw a gyn oncologist since it is also recommended to have my ovaries removed. Panicked with the hysterectomy option and decided to put that off a bit since as of right now I don't have any questionable cells in that area. Saw radiation oncologist and she was optimistic that I will not need radiation. Saw chemo oncologist and she gave me the regiment should the mass measure over 5mm at final pathology. It measured 7 on mammogram and 1.1cm on mri- oh yeah somewhere between surgical oncology and Christmas I had an mri.

Next new plan was to have a double mastectomy with diep flap reconstruction. It was scheduled for 1/17. Tomorrow. I had to have a CT scan angiography to map out blood vessels for the reconstruction. The scan showed a legion on my pancreas, about 1 mm. And a 3 mm kidney stone (but no one cares about that in all this). So now the plan changes again.

Last week I had a lumpectomy with sentinel node dissection. Doc took 5 nodes. I was surprisingly calm going into it, recovered quickly from anesthesia, and was feeling energetic almost giddle by the evening. I have no soreness and didn't need to take any medications. I do not like to take medications. I saw a pancreas oncologist last week and I will have an endoscopic biopsy this week to see what the heck that legion is. I am terrified by what it might be.

Friday the surgeon called me to her office to discuss the pathology report from the lumpectomy. It was not the absolute final report but she was confident enough to share the lump measures 1.2 CM, had clear margins, and the lymph nodes were clear. I felt like that was good news, until she said I will still need chemo. She plans to put the port in next week. Maybe I wasn't listening well or maybe I am getting confused, but why do I still qualify for chemo if it appears the cancer is out, and I'll be have the double mastectomy anyways? Is it because it's triple negative? I am absolutely terrified to have the port placed and to have chemo. I do not like taking medications and this is complete toxicity. I put a message on the portal to talk to her again. I am just so nervous. I am scheduled to see the chemo doc this week as well. I believe the regiment she is planning is cytoxan and adriamycin every 2 weeks for 8 weeks, then taxol weekly for 12 weeks. I've had the echo already to make sure my heart is strong enough. So that's 20 weeks of chemo then the double with reconstruction 6 weeks after that.

I am mostly upset for the people around me having to deal with my while I go through this. I am the planner, the organizer, the glue that holds it all together. I don't have down time, I don't even like to relax. I am mostly scared for my kids, 6 and 4, to have to watch me go through this. Earlier today they were brushing me hair sort of randomly and I started to cry. DS6 got nervous and went to get "help". I felt just terrible and I cry just thinking them being upset. I have told very few people, some family and a few friends. For me I need to do this a quietly as possible but lately I am a mess emotionally.

I am so sorry. My son was 6 when I was diagnosed, so I understand how hard it is to be a cancer patient and a mom of young children.

ACT sucks, but it is the gold standard for invasive carcinoma. It is great your lumpectomy was successful and your mastectomy will likely preclude radiation. Chemo attacks invasive cancer cells in a different way. When I was diagnosed, a breast cancer acquaintance compared cancer to sand that falls on your kitchen floor. Surgery is the broom, radiation is the vacuum, and chemo is the rag you use on hands and knees. You don’t want to find a single grain of sand when your in-laws visit.

Please let us know when you are ready how your other tests go. Prayers and good thoughts for you.

Edited to complete and apologize for clunkiness. I have written and erased multiple times. Just know we care and understand.

 

[Pea-n-Me]

Debated whether or not to post, but I read back several pages and feel comfortable exposing my newly found vulnerability.

My nightmare began back in October 2021 when I was called back for a second screening following a routine mammogram. I was told after the screening that something is in my right breast but it's "not suspicious enough" to biopsy. Something about those words did not sit well with me. I went for a second option, had another mammogram in November followed by biopsy the week before Thanksgiving. The day before Thanksgiving the doctor covering for my gyn called with the news. The cells are consistent with breast cancer. The doctor refers me to a surgical oncologist. I met my surgical oncologist the first week of December. She told me the diagnosis is invasive ductal carcinoma and it is triple negative. While at her office I did the genetic testing, signed for a lumpectomy and possible port placement. The genetic testing results came back about a week later and she called me right away. I have the BRCA 1 gene mutation.

So now the plan changes. She refers me to a plastic surgeon since now that I am brca positive and the recommendation is prophylactic double mastectomy, she wanted me to have reconstruction options. While waiting to see the chemo doc and radiation oncology I saw the plastic surgeon. I also saw a gyn oncologist since it is also recommended to have my ovaries removed. Panicked with the hysterectomy option and decided to put that off a bit since as of right now I don't have any questionable cells in that area. Saw radiation oncologist and she was optimistic that I will not need radiation. Saw chemo oncologist and she gave me the regiment should the mass measure over 5mm at final pathology. It measured 7 on mammogram and 1.1cm on mri- oh yeah somewhere between surgical oncology and Christmas I had an mri.

Next new plan was to have a double mastectomy with diep flap reconstruction. It was scheduled for 1/17. Tomorrow. I had to have a CT scan angiography to map out blood vessels for the reconstruction. The scan showed a legion on my pancreas, about 1 mm. And a 3 mm kidney stone (but no one cares about that in all this). So now the plan changes again.

Last week I had a lumpectomy with sentinel node dissection. Doc took 5 nodes. I was surprisingly calm going into it, recovered quickly from anesthesia, and was feeling energetic almost giddle by the evening. I have no soreness and didn't need to take any medications. I do not like to take medications. I saw a pancreas oncologist last week and I will have an endoscopic biopsy this week to see what the heck that legion is. I am terrified by what it might be.

Friday the surgeon called me to her office to discuss the pathology report from the lumpectomy. It was not the absolute final report but she was confident enough to share the lump measures 1.2 CM, had clear margins, and the lymph nodes were clear. I felt like that was good news, until she said I will still need chemo. She plans to put the port in next week. Maybe I wasn't listening well or maybe I am getting confused, but why do I still qualify for chemo if it appears the cancer is out, and I'll be have the double mastectomy anyways? Is it because it's triple negative? I am absolutely terrified to have the port placed and to have chemo. I do not like taking medications and this is complete toxicity. I put a message on the portal to talk to her again. I am just so nervous. I am scheduled to see the chemo doc this week as well. I believe the regiment she is planning is cytoxan and adriamycin every 2 weeks for 8 weeks, then taxol weekly for 12 weeks. I've had the echo already to make sure my heart is strong enough. So that's 20 weeks of chemo then the double with reconstruction 6 weeks after that.

I am mostly upset for the people around me having to deal with my while I go through this. I am the planner, the organizer, the glue that holds it all together. I don't have down time, I don't even like to relax. I am mostly scared for my kids, 6 and 4, to have to watch me go through this. Earlier today they were brushing me hair sort of randomly and I started to cry. DS6 got nervous and went to get "help". I felt just terrible and I cry just thinking them being upset. I have told very few people, some family and a few friends. For me I need to do this a quietly as possible but lately I am a mess emotionally.

Welcome! Many of us have bared our souls here. It’s ok. I think a lot of good comes from it as it’s a way to connect with others who’ve been down the same path, and even if people don’t post, they read, and it could be the thing that gets them in for their own testing, or they found something said that helps someone else, etc.

One thing that comes out at me is that you are getting an early diagnosis, which is great. Had that been left for a while, things could’ve been different. Our cases sound very similar. I had a clean mammogram 11 months earlier, but within a year I got the same diagnosis: invasive ductal carcinoma, triple negative, 2.1cm tumor, with two positive lymph nodes, and grade 3, so aggressive. I had 5 yr old twins at the time of diagnosis, and being a nurse, was pretty terrified not just knowing what I was in for, but seeing some of the most difficult cases where I work. Such a difficult period. But it sounds like they are being very thorough with you, which is great. I didn’t have gene testing till later (which was negative, they didn’t routinely do it then), but I did wind up having my ovaries out anyway when needed a hysterectomy down the road (which my GYN and oncologist argued about, but oncologist won out, saying breast and ovarian cancers can be related). I also still get tested for new gene sequences that are discovered every few years.

Happy to report that I am 18 yrs out and doing well, never (knock on wood) had a recurrence (great with triple negative). Oncologist, who I still see, says that it is unlikely that that original cancer will recur, but that I have the same risk as everyone else now of getting a new cancer. So that was sobering. I did do the same chemo regimen you are getting. I, too, wasn’t too wild about getting it, but I looked at is as insurance and my best shot at beating the cancer, my main motivation being my kids. With triple negative you don’t get to take anti-estrogen drugs later, so you have to hit it as hard as you can at the outset. And it sounds like they’re doing that for you. So all good news.

I hear you on the worry about your pancreas. But oftentimes when they do these scans they find things, called incidental findings. It happened with my mother, she had a spot on her pancreas but they watched it and it never grew, thankfully. Sometimes they give you the option to take it out if they think that it’s worrisome, but that’s perhaps the time that you go to see someone who specializes just in pancreatic lesions and get their opinion on it, too. Preferably at the best hospital you have around you. At the time of my diagnosis I was having biliary colic (pain in liver area) and was afraid of what was causing it. We did all the testing but my oncologist kept saying we weren’t going to find anything, and we didn’t. I still live with it, it’s one of those quirky things we all have, but when you have cancer, you worry. I really try hard not to worry about things. I did do radiation (because I chose to just do a lumpectomy) and I have some scar tissue from that that is growing and painful now, but I figure it was a small price to pay for getting to see my kids grow up and all that. I still thank God for every day I have. I was also one of those people who does everything for everyone and found it hard to accept help, but eventually I realized I had to. Even though I had lots of loving people around me, I found emotional support at a cancer support center, because they knew how to help me. It is hard for people around you to talk about the really tough things that you sometimes need to process when you get something like cancer. It’s not that they’re not well meaning, it’s just that they probably aren’t prepared to talk about the things you might want to talk about, etc.

I hope things are going well with your surgery today. Saying some prayers for you. Please let us know how you’re doing.

 

[Pea-n-Me]

I am so sorry. My son was 6 when I was diagnosed, so I understand how hard it is to be a cancer patient and a mom of young children.

ACT sucks, but it is the gold standard for invasive carcinoma. It is great your lumpectomy was successful and your mastectomy will likely preclude radiation. Chemo attacks invasive cancer cells in a different way. When I was diagnosed, a breast cancer acquaintance compared cancer to sand that falls on your kitchen floor. Surgery is the broom, radiation is the vacuum, and chemo is the rag you use on hands and knees. You don’t want to find a single grain of sand when your in-laws visit.

Please let us know when you are ready how your other tests go. Prayers and good thoughts for you.

Edited to complete and apologize for clunkiness. I have written and erased multiple times. Just know we care and understand.

I love the bolded! Great way of putting it!

Yes, the problem with these invasive cancers is that microscopic cells can leave the tumor and travel through our bodies before we even find the tumor, potentially seeding somewhere else with a chance of growing again there later on. Chemo is designed to kill those cells that got away. Repeated, and with different types, because every time they might get up, they knock ‘em down again. Over and over.

They know a lot more about how these drugs work today than they did even 20 or 30 years ago, and there are more safeguards in place. The nurse who administered my chemo was also a breast cancer survivor, which I loved.

 

[3threebabies]

I agree, Pea-n-Me. It was a fantastic analogy. Though I had no idea for the first year or so I knew her, the acquaintance was a well known breast cancer blogger and activist. After my diagnosis one of my employees insisted I spend some time with her. My employee was spot on. She was a few years older than I and post treatment. She had also been diagnosed in her 30s with young children. Some of her advice I did not follow, but her wisdom and grace has stayed with me for over 10 years. Her husband has maintained the blog in perpetuity after her recurrence and death in 2015. She left an amazing legacy.

Sorry about tldr.

I find it interesting that you have genetic testing on a regular basis. I was BRCA negative with some abnormalities after diagnosis in 2011. Though I moved away almost 7 years ago, I still see my original oncologist (connected with a nationally renowned cancer center) at least once a year. She never mentioned getting retested. She was a cancer researcher before she joined her current practice and started to see patients. My 2nd onco also said nothing about new testing (once again at a top university cancer center).

After my most recent move, my current onco is a well-known name in breast cancer and connected to a prominent research event. She referred me for genetic testing at our 1st visit last January as so much has happened in the realm of genetics since 2011. Needless to say, it is good I got tested. I have a prophylactic right side mastectomy in my future, but I am waiting for my son to graduate high school. Breast cancer and stuff dominated his entire 1st and 2nd grade school years. I refuse for him to end high school the same way. I will alternate a breast mri with mammogram on my remaining “healthy” breast for the next few years in agreement with both onco and oncology surgeon. Though he doesn’t know it yet, my son will also need to undergo genetic testing. He is not at greater personal risk, but he can be a carrier. My mutation is such that if a a double mutation is inherited from both parents, the child is at risk for severe non cancer related health issues.

 

[Pea-n-Me]

I agree, Pea-n-Me. It was a fantastic analogy. Though I had no idea for the first year or so I knew her, the acquaintance was a well known breast cancer blogger and activist. After my diagnosis one of my employees insisted I spend some time with her. My employee was spot on. She was a few years older than I and post treatment. She had also been diagnosed in her 30s with young children. Some of her advice I did not follow, but her wisdom and grace has stayed with me for over 10 years. Her husband has maintained the blog in perpetuity after her recurrence and death in 2015. She left an amazing legacy.

Sorry about tldr.

I find it interesting that you have genetic testing on a regular basis. I was BRCA negative with some abnormalities after diagnosis in 2011. Though I moved away almost 7 years ago, I still see my original oncologist (connected with a nationally renowned cancer center) at least once a year. She never mentioned getting retested. She was a cancer researcher before she joined her current practice and started to see patients. My 2nd onco also said nothing about new testing (once again at a top university cancer center).

After my most recent move, my current onco is a well-known name in breast cancer and connected to a prominent research event. She referred me for genetic testing at our 1st visit last January as so much has happened in the realm of genetics since 2011. Needless to say, it is good I got tested. I have a prophylactic right side mastectomy in my future, but I am waiting for my son to graduate high school. Breast cancer and stuff dominated his entire 1st and 2nd grade school years. I refuse for him to end high school the same way. I will alternate a breast mri with mammogram on my remaining “healthy” breast for the next few years in agreement with both onco and oncology surgeon. Though he doesn’t know it yet, my son will also need to undergo genetic testing. He is not at greater personal risk, but he can be a carrier. My mutation is such that if a a double mutation is inherited from both parents, the child is at risk for severe non cancer related health issues.

I think it’s because my oncologist is a specialist in genetics. I didn’t seek her out, it just happened that my original oncologist (who never even mentioned testing) retired and I somehow got hooked up with this other doctor. The first thing she did was a detailed family history and genetic bloodwork. Often when I see her she says they’ve discovered a new gene sequence and asks if I want to be tested for it. Insurance doesn’t cover it, and it costs around $600 OOP (maybe more now) but they will take payments if necessary. I usually say, “Uhh, well…” and she’ll tell me to think about it for next time. I would be very surprised if anything turned up in my case.

 

[CaleCakes]

Thank you 3threebabies and pea-n-me for your comments. They really helped. I shared the cleaning analogy with my family and it sort of seems to help them understand as well. I got a call from the surgeon that the port will be placed next week. I haven't really said much to my bosses, but I think it might be time to at least set them up that I won't be at full capacity for a while. I've already started to become distracted and behind on projects.
I know everyone's symptoms with chemo is different, but anything to share on personal experiences with ACT as you called it 3threebabies? Will I feel anything while it is bring administered, like flushed or cold? I was looking up when to expect my hair to fall out- and when I should maybe cut it. I have pretty long hair.

 

[ZellyB]

I'm on a different treatment regimen than you, but I am on doxyrubicin. The first time they administer your chemo they will usually watch you closely to look for any signs of a reaction. I did have a reaction the first time I got it. I got very hot and flushed and had some difficulty breathing. They shut off the infusion and gave me high doses of benedryl which resolved the issues quickly. After I'd returned to normal, they checked with my oncologist who said to try me again but at a slower infusion rate. That solved the issue and now I don't have any side effects while I'm receiving it and I'm able to receive it at the normal infusion rate.

Everyone is different in how they react, however, so just because I reacted doesn't mean you will. If you feel at all unusual once the infusion starts, be sure to let someone know immediately, It came on quite quickly with me, but they can usually address any of those types of reactions quickly and still continue with treatment.

During my first rounds of chemo years ago, I probably started losing hair around 3-4 weeks after my first infusion if I recall correctly.

 

[Pea-n-Me]

Thank you, @ZellyB! I think you are right on the hair timeline. (Ugh.)

@CaleCakes I went in for my second chemo and my oncologist came through the infusion center. She said, “Still have your hair, huh? You won’t after today!” Sure enough, a day or two after that, it started coming out. I was on an every two week schedule and got AC first. I had gotten my wigs prior to that but had a little panic at that point, thinking nothing would look right. Went to have my head shaved and started to maybe buy another wig, but a very compassionate hairdresser/wig specialist took mine that I’d brought with me and got it looking pretty much like my own hair. Weird thing was, I mainly wore the second one, which was the ”fun” one (insurance, I think, covered two), because it stayed on better (I was still out sledding and doing everything with my kids and I did NOT want it to come off!) and I really didn’t have to do much with it to get it to look good. Thankfully I found that! I’ve seen women today who have the confidence to go bald, and I think some use the cold caps now, too (which were not available to me). I’ve always said that the “hair’ part of this is one of the most difficult aspects of all.

I was pretty impressed with how well the ‘pre-meds” took care of most of the [really bad] symptoms that you hear of from the past with talk of chemo. I stayed pretty comfortable physically during the administrations. Emotionally was more challenging for me. But I always brought in a big pastry tray for the nurses and staff, so people would often come by and chit-chat, or if I wanted to be alone I would put my headphones on and chill. I did some meditation during this time as well, to help me stay calm and collected. Whoever brought me I would ask them to just do a drop off and go do something else for a few hours. Usually it was DH and he enjoyed walking around outside and getting a little something to eat, etc. One time a friend came with me and made me really nervous by complaining about things. (STOP!! That’s not making me relax!!) So if someone takes you, let it be someone that can be supportive the way you need them to be, however that is. At home there was an array of medications to take as needed. I tried some but they didn’t always work for me. If I recall, the steroids kept me awake and I would worry about everything. Something to help relax and sleep if that happens would probably be helpful. Many people take melatonin today. By the time I got to the taxol I had some unpleasant, what felt like muscular pains, but I think it might’ve been the Neulasta which I was taking. I think they have more remedies for that today (if anyone has experienced those maybe they can chime in).

 

[snappy]

Thank you 3threebabies and pea-n-me for your comments. They really helped. I shared the cleaning analogy with my family and it sort of seems to help them understand as well. I got a call from the surgeon that the port will be placed next week. I haven't really said much to my bosses, but I think it might be time to at least set them up that I won't be at full capacity for a while. I've already started to become distracted and behind on projects.
I know everyone's symptoms with chemo is different, but anything to share on personal experiences with ACT as you called it 3threebabies? Will I feel anything while it is bring administered, like flushed or cold? I was looking up when to expect my hair to fall out- and when I should maybe cut it. I have pretty long hair.

CaleCales, I can’t really help with the triple negative aspect of your case, as my tumor was hormone receptive so I took Tamoxifen for 5 years after diagnosis in 2004. However, I did opt to have the genetic testing about 10 years ago. I was negative at the time, and have not had further testing. I did the testing because we have two daughters and I thought it was good info for them to know if they should also test and/or start mammograms early. One daughter is already 31 and the other 26.

I will say another poster, Laura, who I believe started this thread in 2005, was the one I think that told me about a website that I read a lot about in the early days, facingourisk.org. I’ll add a link. Under support there is a discussion board that was very very active back in the day. I am not sure how robust it is now.

https://www.facingourrisk.org/support/message-boards

 

[snappy]

I wanted to mention I did have a flap reconstruction for the one breast in 2006. It was really nice to have the breast again, after having the mastectomy in 2004. I was a lot older than you when I went through it all, so having the new breast and the reduction and lift on the healthy breast was a positive aspect of this. No more saggy girls.