TNBC Regional Axillary Recurrence - advice/experiences/input?

I had a local and regional recurrence of ER+ breast cancer. I had chemo again, and also had ALND. I had a PET scan, which was clear. I've had 2 bouts of lymphedema, which both lasted about a month. PT helped, and I do go every 3 weeks to specially trained PT. I think that has really helped with range of motion and keeping lymphedema away.

Sorry you are dealing with this. Hoping you recover from surgery quickly, and that you do not develop lymphedema.

I do have a lymphedema sleeve. I wear it when I run and it's hot, which is when it swells the most. I also wear it if I am doing a lot of yard work. I should probably wear it more than I do.

I do like to run, though I use the word run loosely. If it is faster than a walk, I call it a run, so it's pretty slow!!!!! The picture that's my profile picture was taken at the Rock n Roll half marathon in Vegas. I met some of my October 2013 chemo gals out there in 2014 and 2015 and ran it. I walked and/or ran every day through chemo, including a local half marathon. I trained to walk/run it. I ran 2 miles then walked a mile, ran a mile, walked a mile, ran a mile. I was able to do that through the whole thing, though if I had to walk the whole thing, I would have been fine with that too. I had a couple friends that did it with me, and also were the ones I walked or ran with most days. My daily walks were my sanity savers. They helped me as much mentally as physically during treatment.

The times when I developed lymphedema it was either in the hand only or the hand and lower arm. I saw a lymphemeda therapist and dutifully wrapped it in bandages all day every day for a few weeks until it eased, and then I wore my sleeve daily for another month or 2. Since starting with the PT (I go every 3 weeks) it has not returned. The PT also helps with scar tissue. My first time, I had BMX and reconstruction. The second time they did radiation, and the reconstructed breast was literally rock hard as a result. The PT has helped with the scar tissue.

Feel free to ask any questions!

hi it sounds like we are in the same boat at the same time so I want to offer you what support I can as the main thing I'm struggling with now is not knowing anyone who's weathered and beaten TNBC recurrence — whereas the first time I had 3 women in my corner who coached me through all the steps it took to beat it and it seemed my experience was exactly like theirs. I just discovered a 1cm lump in axillary breast tissue that turned out to be TNBC local recurrence. Had surgery 7/19 and they have determined that they got clean margins and it seems to still not be in the nodes. They are saying that I will start Taxotere/cytoxan with cold cap in August followed by 6.5 weeks radiation, which they spared me the last time. One thing my surgeon told me that has relevance to your situation is that in her experience, when TNBC comes back it shows up in the nodes and when she takes them it goes away for good! My situation seems maybe like the cancer survived all the chemo they gave me the first time (neoadjuant cisplatin and post mastectomy AC) and took up residence in some scar tissue. I can't seem to get the doctors to tell me anything unambiguously positive but like you, I have the sense that this is a leftover and curable if I can just endure going through this tunnel once again. Sending you all the hope and strength and I will look forward to hearing about you crushingly it each step of treatment. I'll be going through the same stuff at the same time

I can't quite discern what SE came from what... taxotere and carboplatin... My friend did Carboplatin for lung cancer (by itself) and said her SE was primarily exhaustion and mental exhaustion (which I had too - also anemia). Her hair did not fall out from Carboplatin though.

TNBC_77:

I am really sorry that you have a recurrence.

I am currently being treated for regional recurrence in auxiliary lymph nodes (hormone receptor positive cancer). I was originally diagnosed back in 2011, and almost made it to 8 years; then the beast was back.

In my case, I opted for limited lymph nodes removal, not the full auxiliary clearance, with additional dose of radiation at a later stage (I am going through chemo now). My case was discussed by the tumor board and they felt comfortable to recommend this option for me. In fact there is a clinical trial underway that compares limited lymph nodes resection with ALND, unfortunately I did not qualify because of previous surgery, but the tumor board agreed to follow the study protocol in my case.

My surgeon ended up removing six nodes that were clearly affected (I had PET/CT before and he also did ultrasound control during surgery). two sentinels removed too andfound to be cancer free.

By now I have full range of motion in my operated arm, however, very recently I noticed that my hand tend to swell. One PT session did the trick but they recommended to continue with weekly massages for a while, to be sure that the problem does not return.

Hi TNBC_77

I agree, EC was tough, especially the last two infusions. Taxol so far has been easier, although the prospect of three months of weekly chemos is rather daunting. I have to remind myself to stay in the moment and not too look too far into the future.

What is your treatment plan, may I ask?

Regional recurrence is indeed considered treatable. Yes, the odds are less favorable now but we still have reasonably good chances to beat the beast and never see it again.

Wishing you strength!

I ran 4 miles one day and 2 miles one day. I've been busy with an investigation at work (fire investigator) and have gone on several walks. Sorry you have to do this again. Cancer just sucks.

For those of you with an isolated lymph node recurrence, what surveillance/monitoring have you had after your recurrence? My follow up is for mammogram only. I don't quite understand why ultra sound of the axilla isn't part of my screening since that is where the disease returned. Although I have had lymph nodes removed, I understand that cancer can grow in the fat or connective tissue of the axilla. My surgeon insists it’s not necessary but curious if that is everyone’s experience.

Thanks ladies, for any feedback. I don’t want to sound like a nervous nellie but after facing this disease a second time I’m perhaps overly cautious

Julz I am so sorry for this happening. I wish you the best in your treatment. It is very generous of you to urge others to listen to their body and be insistent not to let a doctor brush it aside. It is good advice that will help others.

Do they know if it iTNBC or from your other tumor?

See about immunotherapy w/ chemo, if that's right for you.

hugs