Here I go again.

BlackduckBlackduck Member Posts: 18
I am 25 months post mastectomy, 4 rounds of TC chemo, no radiation, was then put on Exemestane which apparently is the rolls Royce of Tamoxifen and a Zoladex injection every 28 days. First diagnosed in July 2015, I decided on mastectomy. Tumour was measuring 4.4cms and was found to be very aggressive. Most common form of b/c was diagnosed, being 90% oestrogen and 90% progesterone positive. At my 2 year annual checkup a mass measuring 1.8 x 1.0 cms was detected in my other breast, this was not there 12 months ago. Biopsy has been performed and sadly this is another visit from breast cancer for me. My original surgery showed there to be NO lymph node involvement and the only reason for me having 4 rounds of chemo, as a precaution, was due to the aggressive nature of the tumour. My multidisciplinary team has told me that this is nothing to do with the original cancer and that this is extremely random as it only happens to 6% of women who have previously dealt with b/c. 
This cancer is a 2nd primary and not a secondary from the original. There are no reasons as to why this has happened and I am struggling to get my head around it. I now have to make the decision as to whether I have another mastectomy or opt for the lumpectomy followed by radiation. Any advice, suggestions or information from others who have found themselves in this same situation would be greatly appreciated. Love to all xx

Comments

  • primekprimek Broken HillMember Posts: 3,182
    Truly gutted for you. I chose a bilateral mastectomy with reconstruction because my original cancer wasn't visible on a mammogram 5 weeks before hand and if it had been deeper in my breast and not easily found by myself..well we wouldn't be having this conversation possibly or I would be stage IV at the very least due to my aggressive Es+Pr-Her2+ grade 3 tumour. I knew for me it was the best option due to breast density and my family history with an Aunt who had bilateral breast cancer. 

    I certainly miss my breasts but have never regretted the decision. 

    I know statistically lumpectomy  with radiotherapy do just as well. My fear was that early detection in my breasts was difficult and therefore too risky.

    It is a personal choice and no answer is wrong. You just have to chose with your surgeon the right decision for you..

    Hope treatnent is kind. There are a number of women here who have gone through similar who I am sure will link in with you. Kath x
  • NannatashNannatash Gold coastMember Posts: 56
    Hi beautiful I feel for you as everyone story is different its up to you but I had mastectomy clear lymph nodes and now waiting for other breast to be removed and then tissue expanders in and then implants I want to keep ahead of this dreaded disease while I can you could always go mastectomy then reconstruction  all the best with ur decisions I spose you could look at it id rather loose breast to loose the cancer id rather no cancer more than a breast x
  • ZoffielZoffiel Member Posts: 876
    Crap. What shitty luck. I had a recurrence too. I think I would rather have had anthrax. 

    If you think you are going to be able to trust a de-lumped boob, fine. If you don't think you will be able to relax, maybe it needs to come off too. Rotten position to be in. Good luck. Marg.
  • onemargieonemargie queenslandMember Posts: 429
    Hi there I had left side triple neg with no lymph nodes and scans all clear and took it off to only have to have chemo and no rads then took the other boob off 6 months later as a preventative even though it wasn’t necessarily recommmeded but trusted my guts on it anyway and have no regrets. If it was me and it meant only surgery and no treatment I’d just get rid of it. It can still recur in the chest wall or armpit etc like it did with Marg above but I wanted to reduce my risk as much as possible. Everyone is different though so trust yourself and you’ll know what’s best for you. Margie xx 
  • melclaritymelclarity Member Posts: 2,422
    @blackduck I'm so sorry to hear of what has happened! I know when I had a recurrence in the same breast it was extremely hard to take, I was so angry and upset, considering Id had radiation and tamoxifen for 4yrs grrrr! I did genetic testing which was negative and they said I only required a single mastectomy as the right breast is separate and my risk is only as the general population. I had the mastectomy in Feb this year with immediate diep flap recon. 

    I know after my 6 year journey for me?? if I'm ever faced with it again I'd do a mastectomy and no treatment, and I base that only on the fact of what happened to me originally. Its so personal! do what feels right for you.

    Hugs Melinda xo
  • MKitty68MKitty68 Member Posts: 195
    so sorry to hear you're having to go through this again, best of luck with whatever you decide
  • UnicornkissesUnicornkisses Central CoastMember Posts: 361
    edited October 27
    So sorry to hear you are back there again @blackduck. What a shit of a thing!

    Such a hard decision to make.
    I tried a lumpectomy on my one breast affected, but pathology after surgery meant chemo, mastectomy and radiation. 
    I would rather have had a mastectomy the first time in hindsight but no one could see the extent of my cancer from the scans.

    If anything goes wrong with my second breast though, it comes off. I am not mucking around again. And yet I am pleased I didn't go with my first instinct to take them both off the first time, and am quite fond of it now, so that would be a gut renching decision.

    I hope you can find a decision that you are comfortable with, so many things to consider with so little to guide you. 


  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 1,591
    You and I are the same, except I was diagnosed later in the year in October. Mine did have node involvement and my treatment was mastectomy left side, auxillary clearance, 4 lots of chemo and now on Tamoxifen. I am awaiting the results of my mammogram and ultrasound and find out on the 7th of next month. I guess if there was anything too unusual they would have bumped up those appointments. I know there is what they call a cyst in the breast but the radiographer didn't sound to concerned about it. Hoping I slip under the radar and go another year without it coming back.
    Probably the only good news of yours being a second primary is that it isnt a secondary one. You did it once girl and you can get over it again. If it was me, I would just do the mastectomy however I am 55 and only have the tiniest boob ever. During mammograms they have trouble getting enough to flatten for a picture. I have found the best treatment is the one the woman chooses for herself. We usually get it right. <3
  • louiseglouiseg Member Posts: 409
    Hi there!
    I am in the same boat except I was cancer free for 7 years before finding a new primary in the other breast.  I had extensive (9cm) DCIS in 2003 at age 35 and had a mastectomy and reconstruction (TRAM) but no chemo or radiation nor hormone treatment at that time.  The second diagnosis was in 2010 at age 42.  This time it was 2.5cm invasive ductal carcinoma.  No lymph node involvement.  I had another mastectomy, lat dorsi with implant reconstruction, chemo (4 x TC) and I have now been on Tamoxifen for the past 7 years.  I have recently found out that I have a gene mutation (PALB2 rather than the more common BRCA 1/2).
    Apparently there is no difference in the survival rates between people who have mastectomies and people who have lumpectomies and radiation.  I could have had a lumpectomy but after already going through it all once before, I didn't want to have to worry about a possible third diagnosis and so went for the more radical decision of a mastectomy again.  My surgeon was 100% behind me.
    Best of luck with your decision.  If you want to chat any time, PM me.
    Louise :)
  • CookieCookie Member Posts: 3
    So sorry to hear you have to go through this. I was first diagnosed in 2007 with invasive ductal carcinoma in the left breast. Lumpectomy, 6 weeks radiation and tamoxifen. Diagnosed again in 2013 with DCIS in right breast and had lumpectomy and sent for genetic testing which came back negative. Diagnosed the following year 2014 with invasive ducal carcinoma (higher grade so not a recurrance) in the left breast and suspicious area in the right breast which ended up being another small cancer. Was told I had to have a mastectomy but decided on a bilateral mastectomy. My surgeon backed my decision when I told him I couldn't go through this again. I was devastated at the thought of losing my breasts but I know it was the right decision for me. 
    Best wishes and whatever you decide will be the right decision for you.
  • SpecialneedsmumSpecialneedsmum Member Posts: 5
    Hello Blackduck, 
    What an absolute horrible situation. I'm one of the 6%.  I remember saying to someone "the good news is, it's a new primary cancer".  they looked perplexed and said, "I've never hear anyone before say a primary cancer was good news".  It's attitude, and experience that get you through.  You know what you're in for this time, sort of.  I had a lumpectomy 23 December 2013, with an invasive triple negative. Then, October 2016 I found a new mass on the other side. It was lobular, and all over the place, so it was hard for me to detect.  This one had receptors, so it's a different beast.  Had a mastectomy on the left, but they didn't take the right one at the time, and that's what I'm lining up for now.  I've had 3 rounds of FEC and 9 rounds of Docetaxel/Cycophosphlamide in total, also total of 4 surgeries and 55 radio sessions, I think I would glow now under UV lights. For me, and I do have an allergic reaction for Doce, I did find the chemo tougher second time around, as I think I hadn't totally recovered from last time, I meant, let's face it, our bodies are never really the same again.. What I found harder the second time was there wasn't so much support, people are kind of tired of it, they remember you coped last time, and they are not as shocked.  On the flip side though, I wasn't as worried this time. Yes, there are sleepless nights again, but it's a more familiar foe.  Regarding what type of surgery, for me, 2 in 3 years is enough, I want them both off, they feel like ticking time bombs.  I'm Bracca negative, but my family history is very, very strong.  Between Mum, my sister and myself, we've had 5 cancers in 5 years.  That's enough, all the breast are going. I felt huge relief after my first mastectomy.  I really did feel all the cancer had gone.  I'm very keen to have the second (hopefully not during Christmas this time, anyway, it's mum's turn again), just hoping I have some reconstruction options. 
    Best wishes through all this rubbish. 
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