Dis Breast Cancer Survivors Part IV - GAGWTA

[luvmarypoppins]

Happy summer everyone!
The vascular surgeon, who I actually didn’t see because no one told me he was on vacation, Gheesh! But I saw the np who my ds knew (he took me). I had tests and made sure I don’t have blood clots now. He looked at scans when he came back and decided the filter will stay in as I am at too great a risk for more blood clots. I am glad I won’t have to have another procedure.
In July I see the regular oncologist. He gave me a stronger pain med for my back. He is talking about scans. I told Dh I have a feeling things are not doing well with the pain I have at times.
Also will be seeing the orthopedic oncology surgeon. He will take X-rays. Seems all he cares about is my leg. He did comment before - I don’t do spines! So frustrating!
Enjoy your summer!’
GAGWTA

 

[luvmarypoppins]

Happy July!
Hope everyone is enjoying the summer. It’s sure hot here.
Saw ortho oncologist yesterday aka Dr. doom and gloom. Said bone did not heal but no sign of cancer. Said eventually the bone or rod will fail and then there will be the “big” operation otherwise known as saying good bye to my leg.
Having a ct scan for reg. Onc. Next week.
Enjoying seeing grandchild to be growing. Dil is still sick.
GAGWTA

 

[Pea-n-Me]

Thanks for the update, lmp. Let’s hope you get lots more time with your leg!

 

[leebee]

GAGWTA!! Just popping in to see how everyone is doing. I check in occasionally as you've been supportive when I've faced cancer challenges with family members, and of course I run into you on other DISboards, too. I wish you all health, happiness, and the best, always. LMP, I hope your summer goes well, and believe me, it's hot here, too! They are saying it's the last day of the heat wave, but a heat wave is serious business when it's high 80s, low 90s in northern Maine, where most homes don't have air conditioning!

 

[Pea-n-Me]

GAGWTA!! Just popping in to see how everyone is doing. I check in occasionally as you've been supportive when I've faced cancer challenges with family members, and of course I run into you on other DISboards, too. I wish you all health, happiness, and the best, always. LMP, I hope your summer goes well, and believe me, it's hot here, too! They are saying it's the last day of the heat wave, but a heat wave is serious business when it's high 80s, low 90s in northern Maine, where most homes don't have air conditioning!

Thanks, @ leebee. It’s been kind of quiet here. Hopefully everyone’s doing well and simply enjoying their summer!

 

[#1hoosierfan]

Hello everyone! Doing well here. I saw my surgeon on Monday. He released me from care since it has been 2 years since my last surgery. Coming up on 3 years since diagnosis of stage 3 ILC in October. It’s a daily battle of anxiety over fear of recurrence. Shannen Daughtery passing hit me really hard on Sunday. My mom also went stage 4 in March after 9 years of being breast cancer free. She is 75 and doing very very well on Ibrance and Letrozole at this time, though.

Wishing you all well. I hate cancer!

 

[Pea-n-Me]

Hello everyone! Doing well here. I saw my surgeon on Monday. He released me from care since it has been 2 years since my last surgery. Coming up on 3 years since diagnosis of stage 3 ILC in October. It’s a daily battle of anxiety over fear of recurrence. Shannen Daughtery passing hit me really hard on Sunday. My mom also went stage 4 in March after 9 years of being breast cancer free. She is 75 and doing very very well on Ibrance and Letrozole at this time, though.

Wishing you all well. I hate cancer!

I remember hearing about people who were on chemo for 30 yrs who were still doing well. Not the intense stuff, but more like a monthly maintenance dose. Hoping your Mom is one of those people.

And I can relate to your anxiety about recurrence, especially in the setting of hearing about someone young dying from the disease. I want to say it was around the three year mark that that finally started to lessen for me. Knock on wood, I’m going on 21 years without a recurrence, and I hope for the same for you.

 

[Grace&Carolinesmom]

Glad to hear updates from everyone!

Things are going well as my latest mammogram in June was clear. It's been 3 years since my diagnosis of stage 1 TNBC. End of May marked 2 years since active treatment ended. Just had my 5 yr colonoscopy and everything looked good. My left arm and breast lymphedema is under control as I continue to wear a compression sleeve most days and do lymphatic massage before bed.

I too hated reading of Shannon Doherty's passing. She fought so hard for many years. Her life was too short. It hangs heavy on my heart as does each story of a new cancer diagnosis or death. It's a reminder of our own fears of mortality.

 

[luvmarypoppins]

Happy August and nearing end of summer everyone
#1hoosierfan and GraceandCarolines mom
Thanks for your updates. Your thoughts and concerns are very understandable.

I am celebrating a few weeks of no dr. appts.
Ct showed nothing too remarkable. A new lung nodule too small to biopsy that they will watch. Reg. Onc. Now wants mri to better see bones. Especially spine which ortho onc. tends to ignore since he “doesn’t do spines” gheesh.

I am getting use to the lymphedema machine. It’s 45 minutes of torture each night. Pretty uncomfortable but helps a lot better than lasix it seems.
We had terrible rain here. 9.5 inches in one night. Terrible destruction near the university with flooded dorms and local town roads and pond there. The hospital was not affected PTL.
GAGWTA. Hope everyone is doing well.

 

[kittylady1972]

It's been a while since I've been here also. I haven't caught up but I'm glad to see so many people still here. I just had my mammogram and was given another all clear...7 years since my bc diagnosis, surgery, and chemo (which was followed by radiation). I started anastrazole last year after 5 years on tamoxifen. I also hate reading stories like Shannen's.

Keep fighting ladies who are still doing active treatment and to those of us who are not in active treatment let's keep it that way and hope we are done with our fight.

Also hope we can all stay positive but I truly don't think the anxiety ever will go away. Every little thing makes me worry that something has returned. I try to just push it away but it truly sucks.

 

[luvmarypoppins]

kittylady1972 - thanks for the update. Your insights are true for many.
My update - I am happy for one thing. What is that? My ds found out from a patient. Dr. who almost killed me during my first surgery is gone!! His last day was Friday. He is going somewhere not good and his first Google review states - Butcher. I am assuming he was forced out. Good riddance. He won’t be able to kill anyone else here. More reviews said you killed my dad, mom etc,
In other news I see the ortho onc. Tues, have an mri of spine from reg. Onc. Thurs. And next week pcp. Another problem because she got a promotion to teach residents so she listed 4 other Dr. all of whom ds knows.
Then there’s the second half of my mri wed.
My leg has been bothering me alot. Also had a ct that ortho onc. Wanted of this. Also accidentally hit my knee with the walker where the screws are. Not good.
I am thankful for my faith. It helps a lot.
GAGWTA. Hope everyone is doing well.

 

[luvmarypoppins]

Happy Fall!
Thoughts and prayers for anyone affected by Hurricane Helene.
My latest medical update. Saw the ortho onc. Said the ct showed bone not healed ur stable. See him in 9 months.
Saw reg. Onc. Today. Said the mri showed cancer in my hips and spine. Since I never had an mri before he doesn’t know if it’s been there for a long time or ugh it’s fast growing. He will talk to ortho onc. And thinks we should consult with Sloan Kettering since my case is complicated with twists and turns. Told him I don’t want to go to city and their sattelitte office is 2 blocks from ds2. Asked about telehealth. I wouldn’t be seeing a surgeon and I heard they review all your records first.
The adventure continues and I know God is watching over me.
GAGWTA

 

[snappy]

Happy Fall!
Thoughts and prayers for anyone affected by Hurricane Helene.
My latest medical update. Saw the ortho onc. Said the ct showed bone not healed ur stable. See him in 9 months.
Saw reg. Onc. Today. Said the mri showed cancer in my hips and spine. Since I never had an mri before he doesn’t know if it’s been there for a long time or ugh it’s fast growing. He will talk to ortho onc. And thinks we should consult with Sloan Kettering since my case is complicated with twists and turns. Told him I don’t want to go to city and their sattelitte office is 2 blocks from ds2. Asked about telehealth. I wouldn’t be seeing a surgeon and I heard they review all your records first.
The adventure continues and I know God is watching over me.
GAGWTA

Sorry you are facing a bend in the road, luvmarypoppins. You are a fighter for sure.

 

[#1hoosierfan]

Thinking of you LMP!

I am seeing my oncologist next week. Kisquali was just approved for early breast cancer/high chance of recurrence a few weeks ago. I hope to be able to go on it. I am a few years out from active treatment, so not sure if insurance will approve. I was stage 3 with multiple lymph nodes involved at diagnosis, though.

 

[Grace&Carolinesmom]

lmp - Thanks for the update. I admire your resilience and self-advocacy. Keeping you in my thoughts.

#1h - I hadn't heard of that pharmaceutical but will definitely research it.

 

[Dan Murphy]

Happy Fall!
Thoughts and prayers for anyone affected by Hurricane Helene.
My latest medical update. Saw the ortho onc. Said the ct showed bone not healed ur stable. See him in 9 months.
Saw reg. Onc. Today. Said the mri showed cancer in my hips and spine. Since I never had an mri before he doesn’t know if it’s been there for a long time or ugh it’s fast growing. He will talk to ortho onc. And thinks we should consult with Sloan Kettering since my case is complicated with twists and turns. Told him I don’t want to go to city and their sattelitte office is 2 blocks from ds2. Asked about telehealth. I wouldn’t be seeing a surgeon and I heard they review all your records first.
The adventure continues and I know God is watching over me.
GAGWTA

Good wishes and prayers continue to follow you, LMP. 's You are such a fighter, LMP!!

How are those boys of yours I met at the Swan so many years ago doing?

Thinking of you LMP!

I am seeing my oncologist next week. Kisquali was just approved for early breast cancer/high chance of recurrence a few weeks ago. I hope to be able to go on it. I am a few years out from active treatment, so not sure if insurance will approve. I was stage 3 with multiple lymph nodes involved at diagnosis, though.

Good wishes and prayers are with you also, @#1hoosierfan, for continued remission and good MTI results next week. And I've mentioned it here over the years that my wife Marie was Stage 3 with I think 17 lymph node involvement (if I have that number wrong, @Pea-n-Me will correct me) back in 1998. Last month she completed 26 years in remission as we both celebrated that milestone along with our 53rd anniversary. And she is still looking mighty fine, going strong.

My best, @#1hoosierfan

 

[Christine]

Hello all! This post is not about/for me, but I've been reading through this thread here. My very best friend of over 30 years was just diagnosed with DCIS, Grade 3. She has an approximately 5 cm mass. I know it's the "good" kind to have but, wow, the mass.

She's elected for a double mastectomy even though the other breast shows now indicaition of any cancer. I think I would choose the same path at our ages (she's 59).

Anyway, I've seen one or two posters here with a similar diagnosis and I'm really just here to educate myself so I can be with her along the way.

I admire all of you for your resiliency here. @luvmarypoppins and I have communicated for many years over our thyroid cancer diagnosis but I see her here (HELLO!).

 

[snappy]

Hello all! This post is not about/for me, but I've been reading through this thread here. My very best friend of over 30 years was just diagnosed with DCIS, Grade 3. She has an approximately 5 cm mass. I know it's the "good" kind to have but, wow, the mass.

She's elected for a double mastectomy even though the other breast shows now indicaition of any cancer. I think I would choose the same path at our ages (she's 59).

Anyway, I've seen one or two posters here with a similar diagnosis and I'm really just here to educate myself so I can be with her along the way.

I admire all of you for your resiliency here. @luvmarypoppins and I have communicated for many years over our thyroid cancer diagnosis but I see her here (HELLO!).

I will comment, I was diagnosed with DCIS in April 2004, as was my mom in September 2008. Neither of us had a mass per se, the DCIS was spread throughout the breast in each case. With that type of spread, a mastectomy is often the best option, as in order to remove it all, you likely won’t have much of a breast remaining. Also, one area of DCIS in my breast was right under the nipple. In my mom’s case, after a good size surgical biopsy, the margins were not clear, so she had a second surgery to do the mastectomy. Not ideal for a 78 year old to have general anesthesia twice in short order. The good news is, neither of us had any invasive component after the removed biopsied tissue was examined. That resulted in no chemo or radiation needed. Mom lived another 14 years without recurrence, and I am 20 years post diagnosis, no recurrence. I did not opt for a double mastectomy as that did not seem necessary in my case, although I knew someone who did. She also opted to forego reconstruction, she was not interested in further surgery, and she was satisfied by being balanced on each side. I went on about 2 and a half years later and did reconstruction, with additional reduction surgery to be symmetrical on the non-affected side. I have not regretted it, I never liked wearing the prosthesis, heavy and hot, living in the south.

 

[Christine]

I will comment, I was diagnosed with DCIS in April 2004, as was my mom in September 2008. Neither of us had a mass per se, the DCIS was spread throughout the breast in each case. With that type of spread, a mastectomy is often the best option, as in order to remove it all, you likely won’t have much of a breast remaining. Also, one area of DCIS in my breast was right under the nipple. In my mom’s case, after a good size surgical biopsy, the margins were not clear, so she had a second surgery to do the mastectomy. Not ideal for a 78 year old to have general anesthesia twice in short order. The good news is, neither of us had any invasive component after the removed biopsied tissue was examined. That resulted in no chemo or radiation needed. Mom, lived another 14 years without recurrence, and I am 20 years post diagnosis, no recurrence. I did not opt for a double mastectomy as that did not seem necessary in my case, although I knew someone who did. She also opted to forego reconstruction, she was not interested in further surgery, and she was satisfied by being balanced on each side. I went on about 2 and a half years later and did reconstruction, with additional reduction surgery to be symmetrical on the non-affected side. I have not regretted it, I never liked wearing the prosthesis, heavy and hot, living in the south.

Thanks for your story.

Yes, the concern is that hers is now a mass, where DCIS usually isn't, so they are hoping not to find anything else.

My friend was very quick to jump to the double mastectomy as she said she just didn't look forward to the extra surveillance that would be required going forward. She might feel differently if she was 35. She is barely an A cup as it is and the doctor told her that just removal of the mass would destroy the breast entirely.

Her kneejerk reaction was that she didn't want reconstruction. But I told her to really think on that because it was still important to her to wear her body-skimming turtlenecks in the winter and other clothes she likes. I said she probably would eventually grow tired of the presthesis-type of bra. If she were well into her 70s, I might have given a different opinion. But she is going through with the reconstruction and has the plastic surgery appointment this week also so everything will be lined up.

 

[snappy]

Depending on what type of reconstruction your friend chooses (flap surgery is very involved), a simultaneous mastectomy and double reconstruction is a lot of surgery.