Aug 17, 2019 03:14PM Debflo wrote:
had two reoccurrences after bilateral mastectomy , it has been since 2014.
Posted on: Jan 17, 2009 04:17PM
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
Posts 1021 - 1050 (1,054 total)
Aug 17, 2019 03:14PM Debflo wrote:
had two reoccurrences after bilateral mastectomy , it has been since 2014.
Aug 17, 2019 03:19PM - edited Aug 17, 2019 03:19PM by Debflo
Was diagnosed with TNBC in 2012, had 3 reoccurrences after this time, but have not had any issues since 2014. I am concerned now because I am having pain along the scar area, burning sensation. Has anyone ever had this
Aug 17, 2019 08:01PM - edited Aug 17, 2019 08:02PM by MinusTwo
Deb - did you have radiation? If so, those scars often pull or hurt. But I would go ahead and make an appointment to see your MO if you don't have a yearly appointment coming up. OR maybe you could start with your GYN if that's an easier doc to see.
Aug 24, 2019 09:04AM Bethh23 wrote:
Hi, Aug 2018 had DMX and TRAM recon followed by chemo for reoccurentce after 15 yrs from initial early BC (lumpectomy , radiation, Tamoxifen). This week had bb feeling hardness near skin surface mammo/ultrasound/MRI and Mon getting it biopsied. I'm hoping it's necrosis. Keep us updated on your pathology and I'll do the same. Oh I learned last summer I'm BRCA2 positive and hence DMX instead of unilateral.
Aug 24, 2019 09:27AM KBeee wrote:
Hoping the biopsy comes back benign!
Sep 20, 2019 06:30PM mel147 wrote:
Hi, All - Wow...it's been a long times since I've posted anything on this site!
My situation now is that I have a tiny lump (about the size of a grain of rice) at the end of my mastectomy scar on the side where I had cancer. I did not have reconstruction, so I'm flat. The breast surgeon said to get an ultrasound of my chest and that they could biopsy it at that time if they see anything and feel like they need to. When I called the scheduling place, they said the regular ultrasound department wanted me to go to a breast imaging place since I had breast cancer. That makes sense to me, but what is confusing to me is that when they scheduled it, they scheduled a diagnostic mammo first and then the ultrasound, even though I have no breasts. And it says you can't have an ultrasound without a mammogram. They're also asking for past mammo's, but I haven't had one in 5 years and nothing showed up on them anyway - it only showed on the MRI. My friend suggested I go in and talk to them about it at the office instead of calling and going through scheduling so I think I will do that, but I'm curious to know if anyone else has run into this issue and how easily was it resolved. It took 45 minutes on the phone just sorting out where they wanted me to go, then another probably 15 with my husband when they called back to the house to actually set the appointment and then I was shocked to see the notifications in my chart that it was scheduled for the mammo, too, even though I repeatedly explained I have no breasts. I'm kind of 50/50 on what I think it is. Part of me is doom and gloom, and part of me is this is no problem. Thanks!
Sep 20, 2019 06:43PM mammalou wrote:
I had something show up in the posterior area of my breast 12 cm above my nipple on MRI. Does this seem like a possible place where you could get a recurrence after mastectomy? It’s pretty high and seems it must be close to my ribs. I had a deip flap 4 years ago
Sep 20, 2019 07:39PM MinusTwo wrote:
mel - Different departments tried to make me have a mammo several times - in spite of the fact that I had a bilateral mastectomy and had no breasts. My MO always stood behind me and ordered that I go directly to ULS. Good luck.
Sep 20, 2019 08:37PM - edited Sep 20, 2019 08:37PM by mel147
Thanks! I hate the extra stress stuff like this adds, but hopefully I will get straight to ultrasound and it will end up ok!
Sep 22, 2019 11:14PM Kopack32 wrote:
Question to all: I had a bi Mastectomy with aggressive Chemo, I went with the nipple sparing and it failed on the cancer side breast. I than had the latisimss Doris flap on the cancer side( left) and the expander in right. The Lat side failed again. I went home to rest and think on options and darn, I got Sepsis, and hospitalized for the 3rd time and put in ICU for 8 days, home with IV for approx month. All this within a year, ugh! Since I was cleared from infection, I started Arimdex . It was not good for me, her sister drug failed as well. I am currently on day 8 of Tomoxifen and have vomited all 8 nights, several times a night oh, I should mention that I take Zofran before the tomoxifen.. now my question - I have no left breast, but a expander in the right breast. I’ve had the expander in for 6-7 months now. I just recently noticed to lumps in the reconstruction scar and pain in the armpit and near the scar of where my port was. I had my sister feel the areas and she said she feels the lumps, I to feel them. I was wondering if anyone went through a similar situation and could it just be scar tissue. Btw the 2 lumps under the breast in the scar were never there, they don’t feel hard but very white and protruding. The 2 near my armpit, and port scar are hard and sore. I’m driving myself crazy, any one else experience this? Reply’s would be very appreciated.
Sep 23, 2019 12:35AM - edited Sep 26, 2019 02:51PM by buttonsmachine
Kopack, I am sorry you are going through this! The only way to know for sure is to biopsy the lumps - you should talk with your surgeon and/or oncologist to arrange that.
Often the lumps after a mastectomy are scar tissue or fat necrosis. Unfortunately sometimes it can also be cancer, so I tend to encourage people to advocate for a biopsy.
In my case my original Drs said the lumps were fat necrosis, but the lumps were actually multiple local recurrences of my original cancer. The cancer did a lot of damage while we "watched it," even with ultrasounds. I trusted my doctor's judgement at the time, but now I wish they had taken things more seriously given my cancer's aggressive features. But that was just my experience - I hope yours is better, but it's definitely good to get the lumps checked out.
Sep 23, 2019 08:54AM helenlouise wrote:
I too had a couple of small nodules come up around my mastectomy scar cancer side. Oncologist referred me directly to surgeon who ordered core needle biopsies. Surgeon and radiologists said most likely scar or fat necrosis. But they never know until they test. The nodules biopsies as tnbc recurrence. Skin Mets. Make sure to get your drs opinion ASAP.
Good luck and best wishes.
Sep 23, 2019 11:03AM KBeee wrote:
Kopack, I definitely recommend calling your docs today. Some start with imaging, others jump to biopsy right away. Either way, do insist on a biopsy to be definitive. I have had multiple biopsies since my first cancer in 2013. 1 was a recurrence, the others benign. Hoping yours is benign.
mamalou, It could be scar tissue, or it could be something worse. What is their plan to investigate it further???
mel147, Contact them again and ask to speak with a supervisor. Clearly explain the situation. I have been forced into mammos for a similar reason, but I have had reconstruction. Of course, thanks to radiation, my reconstructed breast on the cancer side is like a rock, so if you can picture trying to squish a cement filled balloon, that is what it's like. It is stupid, and they cannot see anything, but since I did have reconstruction, they sometimes still insist on trying. If I had no reconstruction, I absolutely would tell them no way they are doing it and no way they are billing for it.
Sep 23, 2019 09:03PM Jennjdance wrote:
I can’t believe I’m in here again. After having cancer in the right breast in 2010, chemo and double mastectomy I had a new primary form in the left breast in 2014. I had a lumpectomy, chemo, and radiation then. My left breast has had a ton of necrosis since then. It’s much harder than the right and I’ve had about 3 really scary biopsies that turned out to be benign necrosis. However today I felt a pea sized hard fixed lump deep in my left breast literally in the sane spot as my scar. But at the chest wall it feels like. Can necrosis form that deep in? I feel like all the other instances i had were more on the surface. I already emailed emailed for appointment ASAP. Petrified to go through this again!!
Sep 24, 2019 11:09AM KBeee wrote:
Jennjdance, I am sorry you just found this new lump. It literally paralyzes you with fear when this happens. Hoping your doctors get you in very soon, and that you get answers. Please make sure they biopsy it and do not rely solely on imaging. Do keep us posted. (((HUGS)))
Sep 24, 2019 08:55PM Jennjdance wrote:
So I saw my breast surgeon today. I REALLY trust him. He's told me before when he's sure I've had cancer or not but he's always very cautious. He felt the lump (which he almost didn't find at first b/c it was so small) and said it felt like scar tissue but you never know if it could be a recurrence so he wanted me to go for an ultrasound. He did say that if the ultrasound didn't show anything that we'd do a biopsy to be sure. So I went for the ultrasound and it came back INCONCLUSIVE! It's almost like my dr knew it would come back that way. Does scar tissue not show up or something on an ultrasound? The tech did tell me that she didn't see anything suspicious but then the radiologist was the one who said it was inconclusive. So now I wait for my dr to call me and I'm sure I'll need a biopsy. But I'm hopeful from all of that information that this is just scar tissue.
Sep 24, 2019 09:25PM mel147 wrote:
KBee - Crazy that they still try the mammo on you! I talked to them today and my ultrasound is tomorrow. She said they have in the notes that it will be an ultrasound not a mammo and she scheduled it for enough time they can do a biopsy at the same time if they see anything. Am hoping for scar tissue and will post back when I know more! Hopefully there will be no discussions of a mammo for me
Jennjdance - good luck with the biopsy! Sounds good the tech didn’t see anything suspicious. Hopefully you will get in soon and get good results!
Sep 24, 2019 10:55PM Legomaster225 wrote:Jennjdance, I had a small lump under my nipple that my BS was pretty sure was scar tissue/fat necrosis. He has a great track record for being correct and telling me what he thinks things are. He is the first to admit that he does not have a crystal ball though and the only way to tell for sure was a biopsy. He left it up to me to and I decided I was not comfortable not knowing for sure. My ultrasound was inconclusive just like yours. We did the biopsy, which was in a difficult location under the nipple with my prepec implant and it was in fact fat necrosis and scar tissue. I was relieved to know for sure and glad my BS, as smart as he is, took the precautions that he did and gave me peace of mind. I hope yours ends up being scar tissue as well. It is always terrifying when we find a new mass. Hugs.
Sep 25, 2019 02:26PM mel147 wrote:
Hi, all - they did not see anything suspicious on the ultrasound so I did not need the biopsy. They could feel the little lump, but it did not visualize as anything so they are thinking it could be some necrosis or scar tissue. I follow up with the breast surgeon in 6 months and go sooner if it gets bigger. I'm very happy, but at the same time, I don't know how to be SUPER happy. It's just a weird feeling I have to figure out. I really WANT to just be "Yippee! It's clear so it's NEVER coming back", but it's like I'm incapable of just being totally free where this is concerned. I do think I'm going to focus more on taking care of me and not being all about work and getting stressed out over things. I would have thought I would have done that 5 years ago, but it didn't 'stick' and I just want to be more relaxed about things Thanks for being here for me, ladies - I didn't realize how nervous I would be about this test until it was time to do it. I'm glad it is over with!!
Sep 29, 2019 09:56PM snowflake22 wrote:
I just had my exchange surgery a month ago after bilateral mastectomy in March, and today just noticed a pea sized lump near where the original tumour was which was outer rim of breast at the bottom, so I'm freaking out a bit while also thinking it could absolutely be scar tissue. Anyway if there was a recurrence would it even be able to grow to the size of a pea that quickly after surgery? I now realize having gone through this it's almost like ptsd because even though logic says it's probably scar tissue I can't help but feel rattled.
Oct 1, 2019 10:55AM KBeee wrote:
Snowflake, definitely get it checked. Do keep us posted. Hoping it is just scar tissue.
Oct 11, 2019 08:46PM Jennjdance wrote:
Hi everyone! So it's been a stressful few weeks but worth it with the good news I got today! Benign!!!! I ultimately had to have a lumpectomy though, since the lump was very small and close to the surface of the skin. So that surgery was Wednesday and I'm still recovering. The dr. said it would take 5-7 days for the results to come in but I knew if it was benign it would come in sooner and 2 days later, I got the phone call! Thanking GOD right now, so blessed and grateful for this chance at being healthy!!!
Oct 11, 2019 09:54PM KBeee wrote:
Oct 11, 2019 10:51PM thisiknow wrote:
Jennjdance... been following your story. O Happy Day! BIG Congratulations to you!
Oct 13, 2019 11:02PM Kopack32 wrote:
Hi tyvm for replying, I went to the appointment, ugh! I don't think they listen. I saw the PA and she did a super fast one min Sono in one spot. She said she Thinks!!! It is either necrosis or scar tissue, but I need to see my plastic surgeon..... I'm thinking wow shouldn't my oncologist surgeon know and/ or be proactive, to be sure.. in the mean time my lumps are still there, my breast is tender and still sore and I get no answers from my Primary down to the Oncologist, I feel like I've been left to fall between the cracks. Not to mention, I've changed med to Tamoxifen and have been taking Zofran with it, this weekend , I was vommiting so bad I thwas vomiting blood and broke the blood vessels in my left eye. Scared my poor Mother and Sister into a full panic attack. All I get is that it will eventually calm down.... I'm so tired of being tired and none of the Docs taking me serious, I guess because I've been so sensitive to all 3 drug ( Arimidex and the sister drugs) they tried me on. Tamoxifen well that's a mess to,. They say it's impossible for me to have the reactions to all of them, I guess I'm crazy and my children, sister n Mom are all seeing things, ugh, wat to do... Any recs, anyon
Oct 13, 2019 11:13PM Kopack32 wrote:
I hope everything goes well n my prayers are with you. As for u feeling like PTSD, I completely agree!!!! I wonder if it ever ends, I started seeing a therapist, but still cannot stop my mind from constantly being worried..... I so dislike when my friends say I need to move on, and that they. Know so many friends that have lived for many many years without any issues, I feel foolish feeling the way I do but I do. I have also went through 4 surgeries from failing (surgeries) and was in ICU from becoming Sepsis from the Bi Mastectomy, and the 10 rounds of chemo, the reactions to the 4 meds and still another surgery coming up, . I'm so disappointed that my friends, and certain family members think I should just move on and stop "shinning" it's very hurtful. I'm so sorry that you feel The PTSD and yes I believe that is what we experience after something so tragically bestowed to us. Keep me posted
Your PTSD Friend 🎀😘
Oct 14, 2019 11:11AM KBeee wrote:
Kopack, Perhaps suggest pharmacogenetic testing. That will show what drugs you are sensitive to. I know it is available through Mayo Clinic. I am sure there are other places that do it too. Mayo can do it through a kit they mail to you. Hoping you find something that works for you that your body can tolerate. I am sorry your doctors are not taking you seriously.
Oct 15, 2019 07:02PM - edited Oct 15, 2019 07:03PM by Brooklyn1234
I can really relate to these posts!
I noticed a lump on my mastectomy scar a year ago but it wasn't flagged in my yearly MRI or by my breast surgeon or his residents. So I tried to forget about it. But when it was obviously growing, I went back to my breast surgeon this past spring and asked him to take another look at it. He felt it, said it was nothing and didn't order a scan.
On my next MRI, it was flagged, I was sent for ultrasound and then biopsy, and it turned out to be cancer. They think it's a recurrence, 10 years later, which is shockingly unusual, as all my doctors keep wanting to emphasize. They think some breast tissue with DCIS was left behind in the original surgery, and then I didn't get radiation because I got chemo, herceptin and a mastectomy instead.
I'm now undergoing weekly taxol with Herceptin. I have a couple suspicious lymph nodes, and a biopsy showed they were clean. But the radiologist is so suspicious she has ordered a second biopsy.
This recurrence is the thing I feared so much, and yet if it's any comfort to anyone, I do find it easier the second time around. It could have been caught a year earlier, but still, my prognosis is very good. Chemo has changed in the past decade -- I'm finding it easier to tolerate, and it's much less stressful when you know what to expect, and knowing that I will get through it. Even the chemo clinic seems like a different place -- a lot more hopeful, I guess because of all the new targeted drugs/immunotherapy. Not trying to be a pollyanna -- today was an awful day because my oncologist had given me the all-clear on my lymph nodes, and it sucked to hear that the radiologist wants to retest. But I'm sort of amazed at myself. Cancer really did make me tougher.
I agree with all the people saying if you find a lump, just ultrasound and biopsy liberally! One thing my surgeon told me is that these local recurrences on mastectomy breasts don't lower your lifespan for whatever reason. And the best way to find them is simply to feel a lump, which you will be able to do early and easily.
Oct 16, 2019 11:25PM snowflake22 wrote:
Kopack,Glad to be your PSTD Friend! Such a roller coaster we are on!
Keebee, here is the update: my PS felt the 'lump' and was very confident it's a stitch that hasn't dissolved yet. I do trust his judgement-he would know where he put the stitches so I feel reassured. He is going to follow up next month and if it's still there he'll send for imaging.
I have had alot going on in my personal life and so that bit of reassurance has helped me keep focused. Last week before I saw him that 'PSTD' thing was making me very emotional, worrying about the impact on my life if it was back.
Feb 6, 2020 01:42AM beep7bop wrote:
well everyone I am waiting for test again, had final reconstruction December 31, 2019. January 28,2020 mentioned small area to PS nurse, she felt it called in another person and am now having ultrasound on Feb 10th. I am so done with all this, it's like I am starting all over. The waiting game YUCK!!