Dis Breast Cancer Survivors Part IV - GAGWTA

[snappy]

Sending prayers to you, LMP. And you as well, Pea-in-me.

Hi to all on this thread!

 

[Grace&Carolinesmom]

lmp - Sending prayers your way!

Pea-n-me - Thinking of you as well and hoping treatment is being kind.

 

[Pea-n-Me]

Thank you, guys. I really appreciate the prayers and good thoughts.
I’ve been in the hospital with a serious case of cellulitis of my breasts and chest.
My surgeon said he’s never seen anything like it before! (Figures! )
My immunity hadn’t fully recovered and I had so many nodes out that the thinking is whatever germ got in the broken skin that normally would’ve been taken care of by the nodes and lymphatics had nowhere to go so it went inward instead.
Several days of IV antibiotics did their job though and now I’ve transitioned to oral antibiotics with good effect, so I’m hoping I can go home soon.
Things had been going pretty well prior to that, just general recovery after surgery a little more than four weeks ago.

I started on the anastrazole (arimidex) without any difficulty, however doctors in the hospital consulted with my oncologist when this happened and they decided to hold off on it for now just in case it somehow contributed to this “rash” that I have. I think she’ll put me back on it when this clears up and it will be fine, but they get funny like that trying to “rule things out”, you know? (Driving me crazy in more ways than one!) Everyone’s been great, though.
I have my consult for radiation next week. Unfortunately this may set me back as far as a start date goes, so the skin can fully heal, but we’ll have to see what they say.
It’s funny how all these little ups and downs happen when you’re going through something like this but eventually it all works out.

Lmp, saying prayers that everything will be ok with your breast. You don’t need any more issues to deal with! Sending hugs. Hoping everyone else here is doing well and enjoying their summers. We have a family trip scheduled for next month and I’m really hoping nothing else happens and I can actually make it down there! At this point, I am so ready!!

PS My hair is a bit sparse but I am glad I did the hair preservation during chemo. It’s finally starting to grow back at a good pace so I’m not bothering with the headbands anymore and I’ve only gotten a few side glances, lol. Most of the new growth seems to still be brown, as well, except by the temples, but it was sort of like that before anyway! Whatever, I’ll take it!

 

[Pea-n-Me]

Oh, I should probably update about the lymphatic bypass I had in my arm (with a vein from my leg) after the full axillary node dissection just for informational purposes in case anyone’s ever looking for a reference here about it.

I had my first PT appt last week with the lymphatic specialist who’s part of the lymphatics team I’m working with, just at four weeks out of surgery. All measurements done before and after the procedure showed there was no change, and that there were no signs of lymphedema in my operative arm at all. This was really great news to hear, since it was such a big part of my surgery - and I did have lymphedema for several years after my previous case of breast cancer on the other side. I was talking to someone in the hospital yesterday who told me her mother recently had surgery and radiation for BC and was currently dealing with lymphedema, so it is still out there. I get a little worried at night when I’m laying on that side, I don’t want it to clog off or anything, and I do have pretty extensive numbness and scarring on that side, but I think that’s also pretty standard with the full axillary node dissection anyway, besides whatever it is they did w my lymphatics. All worth it, at any rate!

 

[Judique]

Oh, I should probably update about the lymphatic bypass I had in my arm (with a vein from my leg) after the full axillary node dissection just for informational purposes in case anyone’s ever looking for a reference here about it.

I had my first PT appt last week with the lymphatic specialist who’s part of the lymphatics team I’m working with, just at four weeks out of surgery. All measurements done before and after the procedure showed there was no change, and that there were no signs of lymphedema in my operative arm at all. This was really great news to hear, since it was such a big part of my surgery - and I did have lymphedema for several years after my previous case of breast cancer on the other side. I was talking to someone in the hospital yesterday who told me her mother recently had surgery and radiation for BC and was currently dealing with lymphedema, so it is still out there. I get a little worried at night when I’m laying on that side, I don’t want it to clog off or anything, and I do have pretty extensive numbness and scarring on that side, but I think that’s also pretty standard with the full axillary node dissection anyway, besides whatever it is they did w my lymphatics. All worth it, at any rate!

This morning I looked for this thread after your visit. I'm so overwhelmed after just reading three pages and cannot even imagine what you and others have been going through! And yet, you took the time to comfort me in my slight brush with this menace.

Thank you so much for your kindness, words of wisdom and even recommendations for a sports bra. I've been so lucky so far and hope that continues. Stay strong and continue to get well! I wish we could meet in the flesh someday.

 

[luvmarypoppins]

Sending prayers to you, LMP. And you as well, Pea-in-me.

Hi to all on this thread!

I miss you too Snappy! Hope things are well with you and your family. Maybe one day we can meet up in Disney again. Always fun with you!

 

[snappy]

Would love to meet up with you again luvmarypoppins. We live closer to Disney now. PM me when you plan a trip.

 

[luvmarypoppins]

Well cry me a River but I know God’s got a big box of Kleenex for me
The radiologist called and said the biopsy came back as breast cancer. He said no lymph node involvement but I find that hard to believe.
They said they will have the nurses reach out to the breast cancer surgeons and someone will call me Monday. I will tell the family tonight.
Pea-n- Me - I hope you are healing and will be able to go home soon. Prayers for you.

Say some prayers for me as I am sure this will be another wild ride on the cancer coaster.
GAGWTA

 

[Tuffcookie]

Well cry me a River but I know God’s got a big box of Kleenex for me
The radiologist called and said the biopsy came back as breast cancer. He said no lymph node involvement but I find that hard to believe.
They said they will have the nurses reach out to the breast cancer surgeons and someone will call me Monday. I will tell the family tonight.
Pea-n- Me - I hope you are healing and will be able to go home soon. Prayers for you.

Say some prayers for me as I am sure this will be another wild ride on the cancer coaster.
GAGWTA

Maryann, I am so sorry to hear your latest health news. You will be in my prayers! You have many more trips to WDW to make, especially with that sweet, new grandson!

 

[Grace&Carolinesmom]

lmp - I am so sad to hear of your latest setback. I have full confidence that you will kick breast cancer's a** and be back on the recovery train!! Sending prayers and positive thoughts for the treatment road ahead.

 

[snappy]

luvmarypoppins, I am truly sorry you now have breast cancer to contend with. Your family is a strong bunch, they will rally around you in person through this, we will rally around you in spirit. I forgot you were having a breast biopsy, so I am really quite shocked that you are now a breast cancer survivor too. You have been with us on this GAGWTA thread for quite a while as a thyroid cancer survivor. Now you will be wearing another hat.

 

[Pea-n-Me]

Well cry me a River but I know God’s got a big box of Kleenex for me
The radiologist called and said the biopsy came back as breast cancer. He said no lymph node involvement but I find that hard to believe.
They said they will have the nurses reach out to the breast cancer surgeons and someone will call me Monday. I will tell the family tonight.
Pea-n- Me - I hope you are healing and will be able to go home soon. Prayers for you.

Say some prayers for me as I am sure this will be another wild ride on the cancer coaster.
GAGWTA

I’m so sorry to hear this, lmp. One more thing to add to the list, right? Good thing you’re already here so we can help support you through this in any way we can. You’ve supported so many of us here over the years. Sending prayers.

 

[Pea-n-Me]

This morning I looked for this thread after your visit. I'm so overwhelmed after just reading three pages and cannot even imagine what you and others have been going through! And yet, you took the time to comfort me in my slight brush with this menace.

Thank you so much for your kindness, words of wisdom and even recommendations for a sports bra. I've been so lucky so far and hope that continues. Stay strong and continue to get well! I wish we could meet in the flesh someday.

This was so sweet of you to say @ Judique. That’s kind of what we’ve always done here, support people going through any phase of treatment including biopsies and waiting for results, etc. We’ve even had people here who don’t have cancer themselves but are supporting friends and loved ones who do. All have always been welcome. I’m glad you didn’t have to join our club, but happy you liked the bras and stuff, lol. Thanks again.

 

[dez1978]

Hello!!! Newbie here. Well to this thread anyway. Thanks Pea for letting me know it existed. I was just recently diagnosed with IDC/ILC stage 1 in June. Triple positive. I was lucky and because I pushed for an MRI due to family history and dense breasts, it was found before I could even feel it. Just about 1 cm. I've had a lumpectomy and SLNB mid July, and that went well. Had my port put in and my 1st chemo last week. I'm doing weekly paclitaxel and herceptin for 12 weeks. Cold Capping to see if I can keep some of my hair. Then supposed to do radiation and stupid hormone blockers after that. Planning to read thru the last few months worth of posts, and while I hate that any of us are here, I'm glad to have this group.

A bit about me, I'm 46, have 2 boys 11&14 who play football and wrestle, just starting 6th and 9th grade, I work in a forensic grippy socks facility, and am a harry potter and disney nerd.

 

[Pea-n-Me]

Hello!!! Newbie here. Well to this thread anyway. Thanks Pea for letting me know it existed. I was just recently diagnosed with IDC/ILC stage 1 in June. Triple positive. I was lucky and because I pushed for an MRI due to family history and dense breasts, it was found before I could even feel it. Just about 1 cm. I've had a lumpectomy and SLNB mid July, and that went well. Had my port put in and my 1st chemo last week. I'm doing weekly paclitaxel and herceptin for 12 weeks. Cold Capping to see if I can keep some of my hair. Then supposed to do radiation and stupid hormone blockers after that. Planning to read thru the last few months worth of posts, and while I hate that any of us are here, I'm glad to have this group.

A bit about me, I'm 46, have 2 boys 11&14 who play football and wrestle, just starting 6th and 9th grade, I work in a forensic grippy socks facility, and am a harry potter and disney nerd.

Glad you found us, dez, and sorry you’ve joined the club no one wants to join.

I hope you get a warm welcome here.

Interesting I haven’t heard the term ‘triple positive’ all that much. Looked it up and looks like it accounts for about 10% of all breast cancers. Sounds like it’s amenable to treatment, too. Good.

Glad everything’s going well for you, too. I cold capped, too. Saved roughly 50% of my hair but you might do better if you’re using the Penguin system, which I missed out on. At any rate, I’m happy my hair is growing back now.

 

[Pea-n-Me]

How are things going for you @luvmarypoppins? Thinking of you. Praying for all here.

 

[dez1978]

Glad you found us, dez, and sorry you’ve joined the club no one wants to join.

I hope you get a warm welcome here.

Interesting I haven’t heard the term ‘triple positive’ all that much. Looked it up and looks like it accounts for about 10% of all breast cancers. Sounds like it’s amenable to treatment, too. Good.

Glad everything’s going well for you, too. I cold capped, too. Saved roughly 50% of my hair but you might do better if you’re using the Penguin system, which I missed out on. At any rate, I’m happy my hair is growing back now.

Speaking of Penguin.... I have Anthem/BCBS in Missouri, and I was able to get them to authorize coverage of it. It took some arguing, but since there are no hospitals in network, within 100 miles that use one of the Digincap or Paxman systems, I was able to get them to cover it as in network. Now, I haven't submitted an invoice yet, so who knows how it will actually work, but it would be amazing if they actually pay for it. it'll be about $1400 plus dry ice over the treatments.

Triple positive is very treatable, which is good. It's frustrating tho because HER2+ just automatically seems to get chemo. Small tumors that are HER2+ are left out of many of the treatment studies, so no matter how small it is, there doesn't seem to be any wiggle room. Like HR+ tumors under a certain size often just get surgery and rads, and they do oncotype and genomic testing. HER2+ doesn't get any of that. Or if you were just HER2 + you'd do chemo, but be spared the 5-10 years of endocrine therapy. Or HR+ you'd maybe just do surgery, rads and endocrine therapy. I get to do them all, and it just feels like too much. Mine was about 1 cm, not in my lymph nodes and they got clear margins. In my head it feels like there should have been options and we are going scorched earth, and maybe something less would have been ok too. Like this just all feels wrong and too much. I haven't quite gotten out of the anger phase yet apparently lol. I'll get there eventually.

 

[Pea-n-Me]

It’s good that your insurance agreed to pay for your cold capping. Mine was entirely out of pocket. Do you have someone with you during your chemo sessions who helps you manage it?

Interesting with the HER2+ issues. I hear your frustration. Hopefully it will all feel worth it down the road when you remain cancer free!

I feel like it’s a lot, too, but for me it seems the lymph nodes being positive bought me extra treatment. The two little spots in my breast were only each 1-2mm!! Not even visible on mammogram.

I always find it interesting how unique each case of breast cancer is.

 

[dez1978]

It’s good that your insurance agreed to pay for your cold capping. Mine was entirely out of pocket. Do you have someone with you during your chemo sessions who helps you manage it?

Interesting with the HER2+ issues. I hear your frustration. Hopefully it will all feel worth it down the road when you remain cancer free!

I feel like it’s a lot, too, but for me it seems the lymph nodes being positive bought me extra treatment. The two little spots in my breast were only each 1-2mm!! Not even visible on mammogram.

I always find it interesting how unique each case of breast cancer is.

My husband has to do it for me. He's thrilled about it lol.

 

[Grace&Carolinesmom]

Hi Dez! Happy to see you found the thread. Everyone here is so helpful and full of positivity (no pun intended-HA!) and a wealth of experience and knowledge. It sounds like you have already completed some of your treatment. Crossing fingers your cold cap treatment works for you. I did not attempt it but embraced the lack-of-hair as a break from shampooing, conditioning, blow drying and styling. I did use cold gloves and socks to help avoid neuropathy in my hands and feet. I "think" it worked pretty well.

Insurance is such a double-edged sword. It sure takes a lot of wrangling and countless phone calls sometimes to get the needed coverage but it eventually works out....most of the time. I had the joy of changing insurance companies mid-treatment and it was a PITA. DH's employer has changed insurance companies every year for the past 7 or 8 years. The new company mid-treatment put up several obstacles along the way but I was blessed that the cancer center had a team member dedicated to insurance filing and fighting for patients' benefits so that treatment wouldn't be compromised.

Sending prayers to all!!