Posted on: Jan 17, 2009 05:17PM
I've just had a recurrence after a bilat mastectomy 15 months ago. Just wondering if anyone else has had this?? I thought I was done with breast cancer after removing both breasts! I did not have rads, chemo or tamoxifen last time. Just had my "lumpectomy" and 5 LN taken out this week, and still waiting on the pathology report. Looks like probably radiation this time and tamoxifen but not sure yet about chemo. Will know more at my follow up appt this week. I guess it was good I found it early - it was right there under the skin. Seems like I read 1% recurrence rate after mastectomy but that seems high to me since I haven't read much about it. Anyone else have this? Thanks, LauraLog in to post a reply
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Jul 27, 2020 03:35PM LillyIsHere wrote:
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.
Aug 18, 2020 12:38PM KBeee wrote:
Badboobagain, I'm sorry you're dealing with this again! Hoping you have a treatment plan in place soon.
Sep 28, 2020 05:26PM Lilir wrote:
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..
Apr 3, 2021 09:26AM sunshinegal wrote:
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.
Apr 3, 2021 11:30AM Spookiesmom wrote:
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.
Apr 3, 2021 01:42PM - edited Apr 3, 2021 01:49PM by 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.)
Apr 3, 2021 05:12PM BlueGirlRedState wrote:
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.
Apr 3, 2021 06:15PM buttonsmachine wrote:
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.
Apr 3, 2021 08:34PM MinusTwo wrote:
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/
Apr 3, 2021 11:50PM buttonsmachine wrote:
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.
Apr 4, 2021 01:10AM MinusTwo wrote:
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.
Apr 4, 2021 10:17AM sunshinegal wrote:
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.
Apr 7, 2021 07:41PM BlueGirlRedState wrote:
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.
Apr 8, 2021 01:16PM KBeee wrote:
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.
Apr 9, 2021 02:38AM buttonsmachine wrote:
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?