Meet others who are just facing the diagnosis of a recurrence of breast cancer or metastatic (advanced) disease. You are NOT alone.
Posted on: Oct 20, 2017 06:21AM
I have been diagnosed with a local recurrence, after mastectomy. Looking around the site to try to connect with others who have had this happen to them, either after mastectomy or lumpectomy. I see there are some of us out there but we are scattered about the site. I thought I would try to start a current thread to try to get us together
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Posts 1 - 30 (166 total)
Oct 21, 2017 07:10PM TwoHobbies wrote:
Christmascarol, I was a local recurrence after mastectomy, too. I had an excision, radiation, was put on lupron for ovarian suppression and an AI. I'm four years out now.
Oct 21, 2017 07:41PM Christmascarol wrote:
Thanks for chiming in. So sad to hear about your recurrence, but nice to connect with others who have had the same experience. I was diagnosed in 2008, IDC, stage 1 (1.4 cm), ER and PR positive. Second time 2017, 8mm, still er and pr positive.
I am soooo happy to hear you are four years out. That is great news! Txs so much.
Oct 21, 2017 10:05PM JoniB wrote:
Christmascarol - sorry to hear of your recurrence. I had a local recurrence 8 years after my initial diagnosis and lumpectomy. I am now a year and a half out from this second diagnosis. Emotionally, I found my recurrence harder than my original diagnosis. Take care of yourself both physically and emotionally. Wishing you all the best.
Oct 21, 2017 11:15PM Optimist52 wrote:
I had a recurrence nearly 12 years after first, both ILC. Same breast, I found the lumps both times, at first my BS said it was a new cancer, now she isn't sure if recurrence of original BC. I was only able to take Tamoxifen for 2 years the first time and my radiation therapy was delayed so possibly those contributed to recurrence, hard to say.
It certainly has been harder for me the second time and I thought the first time was pretty difficult! However joining these discussion boards has made an incredible difference to me in terms of gaining knowledge and support from others here.
Oct 22, 2017 11:29AM KBeee wrote:
I had local recurrence 14 months after finishing chemo. Mine recurred in 2 spots. Chemo was easier physically the second time, but the whole ordeal is much harder emotionally the second time.
Sorry you are dealing with a recurrence.What is the next step for you?
Oct 22, 2017 03:02PM Christmascarol wrote:
Thank you so much for chiming in. Glad to hear chemo was easier for you physically the second time, but i have to completely agree that this second diagnosis has been just awful emotionally. I have had surgery, so the next step is radiation. I start in two weeks. It is so difficult to believe that we had a mastecomy and then a local recurrence. If you have any insight on why this happens and would like to share with us that would be so appreciated. I am hoping more people will chime to share info and give support.
You are so wonderful with helping out people on this website. I noticed that you have contributed immensly to helping people. Very kind of you.
Any advice for the radiation treatment that is coming my way?
Oct 27, 2017 08:53AM mccathyg wrote:
Hi ChristmasCarol (love that name)
I have had two recurrences following mastectomy. First was on my reconstruction which I then had to lose which was for me the most devastating thing to happen throughout all my treatment. The second time was in the chest wall under the mastectomy scar. I don’t know why I have had so many recurrences, nasty little b*****r. Always in the same place as well..
I am now on Letrozole and hoping it will be my magic pill. I am now two years out from my fourth dx and living life to the full. I emigrated and retired and making the most of everything...
Positive hugs to everyone xx
Oct 27, 2017 10:56AM Christmascarol wrote:
Thanks for sharing. So sorry to hear you have had to deal with this so many times, and on top of all that lose your reconstruction. However, I am so happy to hear you are living life to the fullest and have retired. I hope you never had to deal with another recurrence! I also hope the letrozole is as you said your 'magic pill.' xo
Oct 27, 2017 05:23PM Emily2008 wrote:
I have wondered about why I recurred despite mastectomy, chemo, and 6.5 years on Tamoxifen. My recurrence/new primary occurred 8.5 years after my first dx.
Sometimes I wonder if my breast surgeon wasn't thorough or aggressive enough in removing the breast tissue. The new cancer was in the 2 o'clock position, while the first cancer was in the 5 o'clock position, but same breast on the outer side. Seems to me that she would have been super thorough in removing all tissue in the general area, so I don't know...
It doesn't really serve a big purpose for me to wonder *why* I recurred, and of course, I'm BRCA 2 positive, so there's the genetic crap I was dealt. But I do wonder at times how it happened.
Oct 31, 2017 12:48PM Ledditgo wrote:
Ok. First post here and I'm not sure where exactly to start. Maybe I'm in the wrong place.
First dx '08 stage IIa (1/12 nodes positive). Lumpectomy, TAC chemo, radiation, 8 years tamoxifen. Now, 9 years later recurrence in same breast, literally IN the scar tissue, in the exact same spot. I have my first surgeon appointment tomorrow and seeing my (current) oncologist on Friday. I say "current" because I'm not super excited about him right now as he's insisting that this is a "new cancer" that has nothing to do with the prior cancer. As if that's supposed to make me feel better? It just doesn't make sense to me that of all the places in my body that a new cancer would just happen to appear, it would pick right smack dab where the old one was.
First was grade 1 (though a small portion grade 2), and biopsy shows this to be grade 1 also. He said it would have to be a higher grade to be the same cancer. I'm so confused. My feeling is maybe they missed a cell or two and it's been growing there for 9 years, completely immune to the chemo and radiation and everything else we originally threw at it. Now it's finally big enough to see on the mammogram (which is how it was found). My concern is maybe there is another cell out there floating around in my body that also made it past the chemo that no ones even thinking to look for. Maybe I'm paranoid...but it's been 9 stinkin' years...surgery, chemo, radiation and tamoxifen for what they called a sad little 1.2 cm grade 1 tumor. And here I am again. Am I crazy?
Oct 31, 2017 01:15PM Emily2008 wrote:
Nope, you're not crazy. I have similar stats as you, except I had a mastectomy and my recurrence/new primary was a grade 2.
The research shows that the median time for a "true recurrence" is 4.7 years. Given the fact that your cancer came back 9 years later, medically speaking, it's treated as a new cancer. Your MO is correct about that. What this means is that they will approach it as if this is your first cancer, except they will probably have you get staging scans done (CT, bone scan, MRI) to make sure you don't have mets, because even if it's stage 1 again, there is more likelihood that it has traveled than if it were your first stage 1 cancer. Not a huge likelihood, but a greater possibility.
You may not be able to have radiation again. You're probably looking at a mastectomy this time unless they and you think it can be easily removed with no follow up treatment except hormonals.
Have you been tested for BRCA?
Oct 31, 2017 01:23PM KBeee wrote:
your surgeon did not likely miss a i piece of cancer; it only takes a cell or 2.
Sorry you are dealing with this. Hoping you have a plan in place soon
Nov 8, 2017 06:22PM CEL82 wrote:
I was just dx with a recurrence too! I had a DMX for DCIS 12/2016, had recon done, and literally within a month of completing my recon I felt a lump in the same spot as the original! Had lumpectomy and it came back as DCIS (thank god!) It was 10 months from my mastectomy... my surgeon is calling it "residual" and my path report says the recurrence is identical to the original dcis. My surgeon says my prognosis is the same as it was before, but is it really????
They are recommending i do rads and tamoxifen now with US/MRI every other 6 months.
I am only 35 and wanted to have another child (I have 1 now). And all of my doctors are telling me it is still safe. They are recommending i do radiation, have a child, start tamoxifen in that order. I am definitely scared. I do not want another recurrence and want to be alive for my son.... If I had a crystal ball!!!!
I have been looking for someone else that has had a recurrence and went on to have a child after, but I've only found women who had children before or after initial dx...
I feel my recurrence is related to the location of my original tumor (4:00 on right breast, just outside of normal breast tissue, so i describe it to be on the right side of my sternum. The surgeon says it was not on the chest wall or in the pec muscle, but sitting on the muscle) and having a margin of clearance < 1mm (but no ink on the tumor)... i am besides myself. I feel lucky it has not invaded, but am also scared! I know any little cell can be left over from surgery but wonder why this happened so soon after my mastectomy? I am happy that I will be watched closer now and think that the radiation will be a good thing bc of the initialclose margin (surgeon got a 2mm margin with the recurrence). Just feel so uneasy about it all.
Nov 8, 2017 06:25PM CEL82 wrote:
should I be worried about my implants and radiation??
Nov 14, 2017 03:19PM Ledditgo wrote:
I have several friends who were diagnosed, went through chemo and radiation, and then went on to have healthy, happy children. Don't panic!! It can definitely be done. :)
Nov 15, 2017 02:10PM amygil81 wrote:
I've also had a local recurrence. I had a mastectomy for DCIS in 2000. I didn't have chemo or rads, because it was only DCIS.
Then my BF found a lump under my scar in 2009. On biopsy, it turned out to be some of my original tumor cells, now turned invasive and growing into my chest wall. They did scans on me to detect distant mets, which they did not find. That made me stage III and not stage IV.
They had to take my pectoral muscle when I had my chest wall recurrence, as the tumor had started to invade it. I'm down to the bone in places. I call it my upgrade surgery, upgrading me to a full radical mastectomy. " He also took out 10 of my axillary nodes, of which two were positive. I had CMF chemo, followed by taxol. It wasn't fun, but it wasn't horrible either. They wanted to give me AC, but I'd already had my lifetime max of adriamycin when I had my bone cancer as a teen. I also had radiation.
My treatment took about a year. It pushed me into menopause at age 42. The node removal and radiation made my lymphedema worse. But I'm still here, NED, eight years after my second dx. I wish you clean scans, a skilled surgeon, and not too bad side effects.
Nov 25, 2017 10:13PM Beth-In-Tenn wrote:
Was just diagnosed with a recurrence this month, after celebrating my 5-year survivor anniversary this summer. Had a bi-lateral mastectomy in 2012, followed by my lifetime dosages of 3 chemos (T.A.C.). It wasn't in my sentinel node at that time. However, I now have 3 walnut-sized lymph nodes that tested positive for a recurrence. Just started Ibrance and a different estrogen-blocker since the other obviously didn't work for me. If it's working to slow growth, we'll postpone surgery & radiation for 4-6 months. If not, we'll do surgery in December. It does not appear at this time not to be in any of my organs.
Anyone else with this type of situation.
Also curious about others' experiences with Ibrance and with lymph node surgery (which will probably include 10-20, at least) followed by radiation on my underarm area and neck.
Nov 27, 2017 05:15PM KBeee wrote:
Beth, Sorry you are dealing with this recurrence. Hoping these meds shrink the tumors.
I had ALND with my recurrence and also had radiation
Dec 2, 2017 10:25AM Manuella wrote:
Diagnosed with a recurrence this week. Originally diagnosed stage 1B in 2016. Had a micromet so got a ALND and a mastectomy in November 2016. Had low Oncotype score (16). No radiation but 8 rounds of CMF (finished June 2017). Have been on Tamox for 5 months.
Last week I found what looked to be a grain of rice encrusted in the skin of my breast. Husband thought it was a pimple (you could literally see the little thingy through the skin). It was right in the same quadrant/place original tumor was. Biopsy says it’s morphologically similar to original tumor. I have a PE scan Monday and results/treament plan Wednesday. Very scared and shocked. How could this happen so soon and specially after we were so aggressive at treating my stage 1/low oncotype cancer? I’m only 35, no children yet. I’m so sad and confused :(
Dec 2, 2017 02:58PM TwoHobbies wrote:
Manuella, I had a similar situation. Two years after first surgery I had a 5mm turmor in the skin after mastectomy. I believe the tamoxifen was not working for me. was switched to an aromatase inhibitor and am now 4.5 years clear.
Dec 2, 2017 05:35PM - edited Jan 4, 2018 03:04PM by farmerlucy
Dec 8, 2017 04:22AM EmCeeEssEmDee wrote:
Christmascarol - Thanks for posting. I was diagnosed with IDC grade 1 and DCIS, in left breast, Oct. 2017. Relatively low oncotype. Bilateral mastectomy in Nov. 2015 and Tamoxifen since then. July 2016 I also had salpingo-oophorectomy as a precaution. Found a lump in same place as original tumor spring of 2017, biopsy in August 2017 showed it to be cancer. Surgery, in radiation now, aromatose inhibitor soon.
Manuella - My new tumor was exactly like a grain of rice. That is exactly it.
TwoHobbies - Tamoxifen failed for me too. My doctors more recently split between chemo and aromatase inhibitors for my systemic treatment, ultimately coming down for the latter (in addition to radiation). I sure hope that is the right choice, but this is unexplored territory.
Good thoughts for all of us!
Dec 8, 2017 02:25PM KBeee wrote:
I had BMX and chemo as well first time around with an oncotype of 16. It only takes 1 or 2 cells to make a new tumor. Mine came back in 2 places. I am over 2 years cancer free this time though, and hoping to stay that way. Tamoxifen failed for me as well.
Dec 9, 2017 12:02PM Manuella wrote:
Kbee, I too had an oncotype of 16 and still did chemo bc of age (at my hospital they recommended it for under 40s with Oncotype higher than 11).
Wondering if people with recurrence to the skin but not muscle are still considered “chest wall” bc that is freaking me out! From what I’ve read that puts me at stage III (C?). Did your staging change after the recurrence?
I am also wondering what will happen to my implant/ cosmetic outcome after radiation :( I just finished reconstruction 6 weeks ago and while not perfect looking it was perfect enough for me so I had chosen not to get a nipple or fat grafting (lymphedema worries).
I had an ALND, thinking they can’t possibly radiate nodes that aren’t there right? Haven’t met with RO but HOPING radiation will be limited to my boob. I had mild lymphedema swelling in my hand which is back to Stage 0 after implant exchange. Really worried about it coming back and worse :(
Dec 23, 2017 01:31PM buttonsmachine wrote:
Hi all, just joining the chime in. I just started treatment again for the second time after a recurrence (or persistence, depending on which MO I ask). Like some others here, I had a small lump come up below the skin.
I hope that treatment this time around goes smoothly for all of us!