Recurrence after bilat mastectomy?

BlueGirlRedState

Badboobagain - sorry you are going through this again. It sounds like you are in good care, hope all goes well.

LillyIsHere

Badboobagain, thank you for sharing your experience. We all walk on eggshells with this disease. Scary to hear DCIS has turned to invasive type when there is no breast tissue left. I am happy to hear you are in good hands, or some of the best hands we have in this country and I wish you good luck. Please keep us posted because we are very interested in your case as well.

KBeee

Badboobagain, I'm sorry you're dealing with this again! Hoping you have a treatment plan in place soon.

Lilir

Thank you for your post and I hope all is going well. I am recently diagnosed and have my surgeon appointment tomorrow. This post has definitely given me a few more good questions to ask.
Due to high risk, I am opting for bilateral mastectomy. It is the reconstruction that I am wondering about.

Very helpful. Hope all goes well..

sunshinegal

Hi all,

Beesie pointed me to this thread, as I am another case of recurrence after bilateral mx. I had DCIS in 2010, and I am back now with 6mm IDC in the same breast. I'm having a PET/CT scan next Friday, with all fingers/toes crossed for negative findings.

I'm curious about others' experience around axillary node dissections the second time around -- did you have this? Did your surgeon deem it necessary even if the PET/CT was clear? My surgeon - and the tumor board at this hospital - are recommending it. I had a sentinal node biopsy the first time and surgeon seems to think it's impossible to do that again. I'm wondering if it's possible to just radiate them, or even to leave them alone if scans don't find anything.

So I'd like to hear what others did second time around? I'm really worried about lymphedema which my surgeon keeps flagging as a big risk.

Spookiesmom

I found a pea size lump on the non cancer side 2 years ago. Lit up like 4 th July. Out it went, along with 7 nodes. About 6 months after that, my hand started to swell, but not so much that arm. Had rads on that side too now my tumor markers have increased a little bit. Could be extreme stress, or a problem. Get them out. Do what is necessary to hold the beast back.

buttonsmachine

sunshinegal, one of my local recurrences was after a mastectomy, so I also faced the problem of having to do an ALND at that surgery. What I can say is this: when it comes to node removal and ALND, it does not have to be "all or nothing." I expressed my concerns about LE to my surgeon, and while he would not make any promises about exactly how many nodes he would or would not take, I asked him to err on the side of taking fewer nodes if his clinical judgement in surgery led him to believe that it was reasonable and safe to do so. He ended up taking 5 or 6 nodes at my ALND, and those were all negative. So while it does not have to be all or nothing, you may need to trust your surgeon to do what he/she thinks is necessary, and that might include taking more nodes. Of course we can refuse anything - it is your body, after all. I think refusing node removal completely is not unreasonable, but you do so at your own risk. These are difficult decisions, but I just wanted to tell you that in case it helps. Best wishes to you.

(Also, as an aside, if you do have any cancer show up on your PET/CT that indicates a metastatic recurrence, I personally would not remove lymph nodes in that case, but hopefully you are NOT dealing with a metastatic recurrence right now.)

BlueGirlRedState

Any experience with radiation to axilla ? 3rd time BC for me, and this time has metastasized through skin via lymph. Very bad lymphedema in R-arm. Oncoogist wants me to see radiologist. She thinks radiation would help with lymphedema as well as knocking out cancer. Concerned that it might not do much for the cancer and could make the lymphedema much worse. She thinks I have a mutation that makes cancer that has not been identified. Did the CARIS panel. PD-L1 found, she siad there might be immunotherapy for it.

2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.

2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. ). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018.

6/2019 Swelling in opposite arm, urgent care, no clot, lots of fluid. Scans, biopies etc, new tumor R-axilla Dxed 8/2019, ER + 85%. Start Ibrance/Arimidex 9/2019. CTs suggest Ibrance working. With LE and compression pumps starting to get control over lymphedema.

12/2020 - noticed "rash" and thickening, had been noticing loss in range of motion which I attributed to an old injury and getting older. DR says Ibrance/Arimidex not working anymore. Cancer has spread all over chest area in skin, PET did not find anything in organs.

2/2021 Stop Ibrance/Arimidex. Start Exemestane/Afinitor.

buttonsmachine

BlueGirlRedState, I'm sorry you're having skin metastasis - I had that too, back in 2017, and as with you my PET/CT at the time was clear so it was treated as a local recurrence with curative intent. (I had a metastatic recurrence to my bones confirmed in 2020, so that's another story, but the skin mets have not returned for me.)

To treat the skin mets I had to transfer my care to an NCI designated, comprehensive cancer center where they were capable of doing a chest wall resection and a skin graft, and then I did radiation to the skin graft, chest wall, and axilla. I suppose my point is this: skin mets can be hard to treat, and I am not sure that radiation alone would get rid of them. I understand your concern that it might not do much for the cancer, and might worsen your LE. Can you seek out a second opinion? It might require more of a combination approach. It's good that you might have immunotherapy options too.

In any case, it might be worth getting another opinion just to see what they say. These are tricky situations and there is never an easy answer. Best wishes.

MinusTwo

sunshine - these are some really good thoughts & experiences. Personally, I would err on the side of getting it all out, but I like Button's comment about telling doc not to be over zealous. And remember, radiation can cause LE just as much as ALND surgery.

Most docs really don't know much about LE. Just in case you haven't seen this site, it was created with lots of input from BCO people and has great information. https://www.stepup-speakout.org/

buttonsmachine

Maybe someone else will chime in who knows the exact statistics - but I think surgical removal of lymph nodes does carry a higher LE risk than radiation alone.

However, it is important to note that both surgery and radiation can cause LE, this is true.

MinusTwo

Buttons, I would guess surgery carries more risk but I'm not sure. But some people develop lymphadema after SNB dissections for biopsy.of only two nodes. It's always a risk.

sunshinegal

Thank you everyone for your responses. Thankfully, my surgeon seems dialed in to LE as a risk - she has offered to send me to the lymphedema clinic at the hospital to get information and do baseline measurements. I had zero LE symptoms for 10 years after having 4 nodes out, and maybe the stats are in my favor since I have low BMI (?). I like Buttons' idea regarding how many nodes to remove. My surgeon has mentioned "around 10 nodes" in each of our conversations. Maybe there's some flexibility there.

BlueGirlRedState

Buttons- thank you for the reply. My oncologst feels strongly that radiation will help with the tumor, the metastasis, and lymphedema. She has referred me to a radiation oncologist who I see tomorrow. I am very scared that radiation will make the lymphedema much worse, and may or may not do anything for the cancer. I did try to set up getting a second opinion at MD Anderson in Houston, and the person taking the information gave me the impression that they do not second guess current DR, and if a new treatment has started, will not take on a patient until the treatment fails. Can that be right? I thought second opinions were an option.

slmdavidson

Hi BlueGirl,

Definitely get a second opinion but go to a different network or hospital. Keep us posted!

Laura

KBeee

I had a local recurrence. When they went to get clean margins, they also tested what they thought was a lymph node and it came back positive, so they took 13 nodes total. It ended up being a second tumor, and not a node, but I did have radiation afterwards to tbe chest wall and axilla. I had BMX the first time and did not have radiation.

buttonsmachine

BlueGirlRedState, I don't really know what they mean by that, but I went to MD Anderson for a second opinion some years back and they did give me a different treatment opinion than what my MO at the time was recommending. I think they definitely do second opinions, but maybe they mean they wouldn't advise you to interrupt your radiation treatment (or other treatment) with your regular doctor halfway through. I can see why that makes things confusing though. Can you get in to MD Anderson before making a treatment decision or change?

Susiemommy

Bluegirl, you've certainly been through it. I'm so sorry. Were all of your cancers Her2 negative? Did you do any of the Oncotype or other tests? Was your Ki67 astronomical or something? I'm sure it's beyond frustrating to be doing everything your told to do and still have these recurrences. Have you tried any integrative medicine or alternative therapies?

Sending massive positive vibes your way.

BlueGirlRedState

Susie - thank you for the suggestions. I find acupuncture helpful, mostly stress/anxiety. Took a break from it with Covid concerns. Resume this week. Will ask about pain issues. Asked about integrative therapy where I get radiation and have not heard back. Hoping for yoga/meditation/tai chi at facility. Local classes hard to find with covid distancing/masks etc. Oncologist thinks I have a mutation that has not been documented.

Nonni2015

Hi all -

It's hard enough coping with cancer...but having to deal with it a second or third time, that is asking way too much of us. I just got results back from a biopsy I had done a couple of weeks ago. It is a recurrence of invasive inflammatory breast cancer, now it is on the mastectomy site (had that done February 2019,no reconstruction) in the form of an outer skin rash but inside active cancer in my blood vessels on chest wall. How much are we suppose to take?! The original breast cancer journey started on January 7, 2019 and included the news of Stage IIIB cancer, progressed to lymph nodes. This news came after being extremely vigilant with my mammograms & receiving news I was fine year after year but in reality, the last few years of testing I wasn't fine, mammography missed it...progressed to Stage IIIB. I had surgery, chemo, radiation and given the cancer free light in November 2019. Now, just 18 months later, a recurrence that was initially told was "broken blood vessels, nothing to worry about", went back a few weeks later for another assessment, then I was told "vascular changes due to radiation" (even though the radiation was over a year ago), went back a month later and was offered a biopsy but told "It's probably not anything, it would be shocking if it was" Well, now all the doctors are shocked, including myself. Why is that medical care is so dismissive initially? Why was I not told a biopsy would be a good idea when I was first seen rather than be told I was fine and not to worry?

Now, I am waiting to be seen by my oncologist and waiting to hear what tests, scans, etc. I need to go through. I've now have this recurrence of breast cancer which is active in my blood vessels, skin and lymph for three months and I am devastated. I'm trying to live in the moment and be upbeat but it's a challenge. I applaud all of you, all of us...It's really something to be handed this road and all that it entails more than once and learn how to manage it. We are all hero's.

Salamandra

I'm so sorry Nonni2015. I agree, that is objectively too much

moth

Nonni, sorry that you're back. It is disappointing indeed. Just FYI, inflammatory breast cancer is always IIIB minimum. Finding it earlier would not have changed that staging because that's how IBC is staged as a minimum. It is difficult to see on mammogram - it's a very tricky disease.

Keep us updated on your tests and results and what your treatment plan is. Hang in there.

BlueGirlRedState

Nonni - sorry you are going through this. And yes, it is scary and maddening. I am going through my 3rd BC (twice left, and now right, even though I had a bi-lateral after the 2nd left). DR thinks I have a mutation that has not been documented yet. Sometimes, most of the time, I think there is too much confidence that standard treatment works, even though with ER+ there is a lot if documentation about cancers mutating and developing resistence to hormonal treatment. So much work is needed for both early detection, knowing which treatments are most likely to work (and if they are working) for each person, and the damn SEs of treatments. Sometimes I just want to scream when I hear a DR say "5 year survival rate" - just WTF does that mean.

Nonni2015

Thank you Salamandra, Moth and BlueGirlRed - it really sucks. I'm usually a very upbeat, positive and outgoing person but lately I've been very moody, short tempered and have pulled inside myself. I keep thinking of the chemo days and trip upon trip to the hospital for one reason or another since I had a very hard time tolerating it. I keep thinking on the first go round, on January 6, 2019 I ran 4 miles, had long blonde hair, looked fit and robust, I had just turned 65 but looked maybe 40...health and fitness was my life, owning and operating a private personal training business for 15 years....then on January 7, 2019, the very next day I became a cancer patient since that was the day I heard the results of my biopsy and MRI. Life was never the same after that. The first road was very tough but this second kick to the face seems much more sinister. I now have medium long gray hair, am thinner than I was in the past, I don't run anymore and I don't lift weights like I used to. I don't socialize (mainly due to COVID but have pulled in quite a bit even if there wasn't anything such as COVID)...my eyes which were always so full of life are now sad and scared and angry and overwhelmed. I have three granddaughters I really want to see grow up; they're 5, 9 months and 6 months...can I simply see them get through elementary school??!! Of course high school would be nice and college would be better but I'll take elementary school. My husband passed away in 2003 and I have two grown adult children, a daughter and a son...I am their only parent and even though they're both married and on their own and they don't need me like they used to, I am an integral part of their lives and I'd like to continue that. Am I whining? Probably...should I stop whining? I think so...It's really not me, I'm not really showing you the best version of myself. So, I think I will make an antioxidant smoothie with Black Raspberry Powder and go for a nice long walk. Tomorrow is my appointment with my oncologist...I will know exactly what I'm dealing with and need to be in a good frame of mind. THANK YOU ALL AGAIN!!! Apologies for the rant. Cancer tends to throw our lives in so many directions all at once ...

Nonni2015

I hear you loud and clear! I am so sorry to hear you are facing this a 3rd time...that is just not right. How is one suppose to cope? Life is challenging enough all on its own without having to deal with a 3rd bout of breast cancer; we do what it asked, we have surgery, we have chemo, we have radiation, we eat a plant based and healthy diet, we exercise, we all try our very best. Very very maddening!! Please know you are in my thoughts and prayers.

Salamandra

"my eyes which were always so full of life are now sad and scared and angry and overwhelmed."

It was very vivid and moving how you wrote this and also I wanted to affirm for you, as I'm sure you already now, that sometimes life gives us what to be sad and scared and angry and overwhelmed by, and it is OK to feel that way. I'll go further and say I think they are still full of life, just a darker side of life, but still *life*.

Nonni2015

Salamandra -

Thank you for your response; you're very kind. I know the darker side of life very well. I've not had an easy or smooth road since birth, seriously. I would like the opportunity to "live with ease" for awhile. I'm aware of and appreciate the gifts in all the many challenges through the years. I do believe there is a golden nugget in every experience...sometimes, we really have to dig for them, but they're there if we are willing to see them. Then there is the other side of the coin, I'm still scratching my head why life is such an uneven playing field...I guess I naively believe in fairness for all. I'm reminded of a Hoʻoponopono (Hawaiian) Blessing:

May you be Happy,

May you be Healthy

May you be Safe

May you Live With Ease

That lightens my spirit every time I read it. I don't know if I have it to get on this second journey. The first one almost broke me but it didn't...I eventually triumphedbut this new situation and it's presentation after only 18 months being cancer free has thrown me into another realm.

May we all be Happy, May we all be Healthy, May we all be Safe, May we all Live With Ease

Elbritton

Mama, you deserve better. I’m 34 with BC and I’m already exhausted - I cannot imagine having had to deal with it for almost 3 years. You are STRONG just like my mother was with her BC