Long term survivors then recurrence

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  • wraithg
    wraithg Member Posts: 93
    edited March 2013

    So girls here I am, after a bilateral mascectomy with diep reconstruction, home and recovering well. My homecare nurse just left and she was very impressed with my reconstruction. Some ladies said the stairs would be difficult but I am finding with a small house they are my only form of exercise. I am feeling great!! I realized that my decision was a drastic one but knew that because I couldn't do the lumpctomy with radiation and felt my emotional and physical strength was not able to deal with a more natural approach that the bilateral with recon was my option.  I don't believe in everything that traditional medicine offers , will look at traditional and natural medicine and always do my own research to come to my own decision. I am sure that in the long run my self esteem will be better because it was my decision and it looks better than what I had.  My breasts will have more symetry and I have a flatter tummy. Must watch my diet though or that tummy will come back. Tummy is sore but not too bad, can't wait to get drains out and not using any painkillers right now, the incision is nice and slim with dissolvable stiches. The more I am up and walking the better tummy feels but then the back gets sore so I get up and down and up and down. My breasts are swollen and bruised somewhat tender and they feel soft. I can raise my arms but have to remember to not overeach for things. Cheers to all of us finding our way through this thing called cancer!!!!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    My SIL had same dx.. DCIS 88', mets to spine 2000. Mets everywhere else 2004-still going strong 2013! Hang in there!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2013

    My SIL had same dx.. DCIS 88', mets to spine 2000. Mets everywhere else 2004-still going strong 2013! Hang in there!

  • Not-Me
    Not-Me Member Posts: 198
    edited March 2013

    Not quite 10 years out...but 9 years with a reoccurence.  Yikes.  Just had a double mast three days ago...and am recovering.  Stage 1 this time round...stage 1 the first time.  

  • SchnauzerMom
    SchnauzerMom Member Posts: 374
    edited March 2013

    I was first diagnosed in 1987 (stage 1), recurred in 1989 (stage 3), then after nearly 23 years with no evidence of disease was diagnosed (2012) with liver and bone metastases.  Sorry--I know it's not good to hear.  My oncologist said it doesn't happen very often after that long.  Don't know whether I was lucky that it waited so long, or unlucky that it came back at all. I am very grateful to have had all that time, though, and I continue to hope for more time (although probably not another 23 years).

  • wraithg
    wraithg Member Posts: 93
    edited March 2013

    I know there are never any guarantees. I am not sure I believe in reoccurance but that we just get it again. I figure the stress in my life caused the cancer cells to break my immunity down. I wish everyone the best fight you can give it and recovery!!

  • wraithg
    wraithg Member Posts: 93
    edited March 2013

    my first was 14 years ago and just had a double masectomy too. Hoping I don't see it a third time but will try to just live each day I can with a posiive outlook

  • uuyrwds
    uuyrwds Member Posts: 4
    edited March 2013

    Do you mind telling mehow you found out about the mets?  I am going through that now.  I was dx in 2005, had lump, rads and Arimidex for 5 years.  Recently, I was getting into my car when something went crack in my hip.  It hurt like hell for a while, then seemed to get better.  I went for pain management and had already had xrays done by my Orthopedist, which didn't show anything.  I was sent for an MRI which showed a lesion in the lumbar area.  Two docs think I fractured a bone since I have Osteoporosis from the Arimidex.  The radiologist says its suspicious for mets to the spine.  The pain, which had been getting better is now getting worse.  I am scheduled for a bone scan on Tuesday.  What symptoms were you having?

    Thanks.

  • joymanages
    joymanages Member Posts: 3
    edited March 2013

    In Nov 1984 breast cancer on right side-said it was pre-cancerous or later learned stage 2- 5 lymph nodes involved-I had a choice of radiation and chemo or Nolveldex (Tamaxofen). My onc was the only one in the Quad Cities-he had all of the European studies and said the Netherlands had good luck with Tamaxofen and they were putting people on it for life.  Well, then in the late 80's or early 90's he left the area and sold his business to another onc--I got him and he had a fit as that was 1983 and by that time i had been on it 9 years-I had fibroids in my uterus and they wanted to take them out (Note:  we now know that Taxmoxifin can cause the fibroids, back then they said ovarian cancer - now we know in only some cases do people get it that may be prone to it.  I also choose to have my ovaries out as they thought that was the answer.  So no longer on Taxmoxifen-7 years went by and in July 2000 I had DCIS on my left side-had it taken off and they thought it was in my colon and the surgen removed 8 1/2" of colon that had a few flat polyps in it, but no cancer.  No medicine was offered and cancer was contained in milk ducts.  All of those years they gave me a chest x-ray and in Nov 2008 they found a 9 mm lung nodule--thought it was from lung cancer-but I told them to check estrogen receptive-I was right and the surgen when into my armpit after studying everything and found a lymph node wrapped in a nerve that could never be taken out with out seriious damage and possible death.--in Dec 2012 it was 19 mm so sort of a slow growth-was on Arimidex 18 months, Faslodex 18 months and Femera 6 months-so Now 7 Mar 2013 am on Afinitor & Aroasin-mouth sores yuk and had a fever for 3 or 4 days not sure where it came from.  My hair seems to be loosing its luster and had thin hair all of my life-so some of it is coming out.  I really do not like taking the stuff as I was off the aromatase inhibiters for 2 1/2 months felt really good-now back to not so good, but doing things.  Will talk to onc Wed regarding blood test to see if my numbers are going down--they were almost perfect when I took the blood test prior to starting these drugs.  Next year 2014 it will be 30 years-I am 71.

  • Not-Me
    Not-Me Member Posts: 198
    edited March 2013

    Hugs Joy...what a journey.  I was 41 at age of onset as well.  Take care.  

  • honeybair
    honeybair Member Posts: 746
    edited May 2013

    I was diagnosed with DCIS, stage 0 in August of 2001.  My treatments were lumpectomy followed by 25 radiation sessions.  In Dec., 2012, following my mammogram, my surgeon discovered a swollen lymph node in my right armpit.  A biopsy confirmed the presence of cancer with a large tumor in one of my nodes.  My treatments have been chemo to shrink the tumor, modified radical mastectomy to be performed in late July and then more radiation.  I never worred about a recurrence and based upon the research that I have done, the recurrence rate for my original type of cancer is a mere 1.5 percent.  I had lived a wonderful worry-free 11 years and for that I am grateful.  Thought I would remain cancer-free.

  • bevin
    bevin Member Posts: 1,902
    edited May 2013

    Dear Honeybair,

    I'm sorry about your recurrence. It looks like some good tx options exist, antihormonals and herceptin. Wishing you strength and peace as you go through this.

    Bevin

  • honeybair
    honeybair Member Posts: 746
    edited May 2013

    Thanks, Bevin for your good wishes.  I do remain positive in that there are many treatments to help us today and my doctors are throwing them all at me.

  • thisisit
    thisisit Member Posts: 2
    edited June 2013

    hello netty,i too had reoccurance in the same breast. i first was diag in 2004 and had a lt mast with reconstruction from my tummy.because my  lt breast was bigger, i had a reduction and recon from my back at the same time. the pathology showed dcis in the rt and a mast was advised. i declined ,but went for op 3 years later , thinking it was preventive. i near fainted when i was told there had been 3 tumurs there and i would have to have to have chemo again. during this time i had been taking tamoxifen for 4 yrs.finishing all my treatment i never thought it could come back again. i was wrong. i found a small lump this march in my recon to rt breast.i was totally sickened and just has all taken away, so i am back to girlhood and flat as a pancake. i had a course of radiation also. it has not moved anywhere else. i have tried Femara tabs for one week now as advised,and am starting to feel the side effects.surely it cant come back as there is no br tissue now.i am itching to stop taking them as i would prefere quality rather than quantity. keep up the pos attitude.

  • Nanka
    Nanka Member Posts: 97
    edited June 2013

    Hi all...so many recurrences! I am so sorry you all had to go through it again. Just wondering if your margins were clear on initial diagnosis? Could this explain the recurrences?

    Michelle

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited June 2013

    I didn't have a recurrence, but a new cancer in the other breast. This was 28 years after the first one. Same size, same stage, same grade as the first one.

    Both missed by all the yearly mammograms.

  • dogsandjogs
    dogsandjogs Member Posts: 1,907
    edited June 2013

    My mother-in-law had a mastectomy in her 40s. At that time they took out the chest muscles too ----

    25 years later mets were found in her bones.

    Don't know what her original treatment was as this was in the 1950s. So maybe just chemo?

  • thisisit
    thisisit Member Posts: 2
    edited June 2013

    thanks for the symp.only i had a reduction in rt br ,i would,ent have known i had dcis.3 yrs later i had sur that found 3 tumurs. they where very small and did not show in my mamo. there were very clear margins, and i did,ent expect to see it again.seemly with reconstruction there is still br tissue and it can come back again.on hinesight ide have  had double mastectomyand not have had to have chemo again, which was very hard on me.still i,m grareful to be still here and enjoying life to the full.

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