HELP, surgery or no surgery

kimmie39
kimmie39 Member Posts: 1
edited March 2014 in Breast Cancer #1
Hi,

Im new to this site but not new to fighting BC.
I had my first BC in 1995 stage 2 ,I was 27 yrs old had lumpectomy then chemo (adrien, 5fu,cytoxin) then radiation followed by 5 yrs tamoxifin.

Stayed cancer free 11 yrs!!!! Now in April I noticed the IBC symptoms and spent the next 3 months fighting Docs to get it diagnosed.

I have had 6 rounds of Taxol and Carboplatium. Which shrunk the cancer. But I still have active cancer in Both breast but the right is the worst. I also have cancerous nodes on both sides.

OK Heres my problem. Originally my treatment plan was 6 rounds of chemo then double mastectomy with node removal then 6 weeks radiation. At first I was stage 3b. Cancer was only detected in breast and nodes.

Then right after chemo I had a ct scan and it came back showing scaring from treated cancer in my bones. This made me a stage 4.

Now Ive seen 2 oncologist and each has a different opinion as to how I should proceed. Im confused and need as much input as I can get. Of course we all know how aggressive IBC is so while Im making up my mind and trying to get the best treatment plan the cancer is growing.

Im hoping you gals will give me your opinion on the two treatment options and where I can get a third opinion.

Doc number 1 treatment plan ------ Have the mastectomy , then go back into chemo to treat any cancer that may have gotten past the lymph nodes then radiation.


Doc number 2 treatment plan ------- Do not have mastectomy (the surgery will not increase my survival rate she says) Go back into chemo treatment immediately. Then keep treating disease as it appears because it has gotten past nodes.

OK now my heart says (be aware it changes its mind often and is uneducated in oncology) to go back into chemo to shrink the cancer as much as possible then have the mastectomy with node removal hopefully making me NED. If not have more chemo then radiation.

Of course none of these courses of action match. And Im lost !!!!!

AND my right beast has developed a shooting pain today. Im 4 1//2 weeks out of chemo. Does this mean its rapidly advancing? THIS IS SCARY.

Thanks for the help.

Hugs Kim

Comments

  • 3cbrca
    3cbrca Member Posts: 206
    #2
    Sorry to hear that you're fighting it again Kim. What city are you in and who are your doctors? A third opinion might not be a bad idea. Some doctors aren't that experienced with IBC and a third doctor might be. Are you seeing a doc at a major academic center?
    sheilah
  • 24242
    24242 Member Posts: 1,398
    #3
    I too am very sorry you have been through so much. But the best thing one can do is listen to their own soul and do what is best for you. I try to remind people that we are all truly different and most often we are truly the doctor's own experiment. One also must remember that surgery is no walk in the park and comes with its own set of risks. I was IBC at 36 and remain cancer free after just 10.5 years myself, living knowing my risks for reoccurance and other types of cancer. At this stage of diagnosis I tend to agree with doctor that stated your odds are not increased by the removal at this point and do chemo to get at existing cancer.
    Many women opt for double mastectomy as I had wanted to do at my stage 3 diagnosis with 11 out of 21 positive nodes. The best advice I think I truly got, which ended up saving my life in the end, was from my mother the nurse that suggested I worry about the cancer first then worry about the healthy breast after if I needed to. I had the energy left to fight with all my might and I am doing better than I had for many years before my diagnosis.
    Only you know what is the right path for yourself and don't deny yourself that control over yourself. In the end doctors have criteria to follow and some of us just don't meet any of it that has been set out for them.
    Be good to yourself always,
    Tara
  • Unknown
    Unknown
    #4
    Hello kimmie.
    Confused? Scared? No wonder!
    I had cancer in right breast in '86....radical mastectomy followed by 10 rounds of chemo. Dr. advised me to consider having left one removed as a precaution. I didn't listen.
    Had cancer in left breast in '88 follwoed by 10 courses of chemo and 5 weeks of radiation then 7 years of tamoxifen.
    I had nodes involved in both cancers.
    All that started 21 years ago...and here I am 59 and doing fine. I have been 'breastless' all these years (no recon) and do not find it an issue. Of course there was an adjustment period after the surgeries but I was so thankful to have a better chance to live long enough to raise my 2 kids that it was a 'no brainer' for me.
    No one can tell you what is best for you. I am just saying, don't be afraid to have the surgery and then do EVERYTHING else you possibly can to increase your survival rate and then GET OUT THERE AND ENJOY LIFE! God bless.
  • seof
    seof Member Posts: 819 Member
    #5
    Welcome to the site...it is a good one. In Texas, the place to go with regard to cancer for all the latest and best is MD Anderson in Houston. I think I would go for a 3rd opinion if I had 2 conflicting ones. Also see if your local branch of American Cancer Society might have folks you could talk to in person about their experiences and recommendations for Dr. I am having a double mastectomy (pre-emptive strike on the 2nd side) due to family history and personal comfort level. Cancer may come back somewhere else sometime, but it won't start in the other breast. Chemo has been very successful for me with minimal side effects (I just finished 6 mos, now surgery to remove cancerous breast and lymph nodes, other breast is per my request). Then I will have radiation and probably more chemo...it depends on the pathology report after nodes and breast tissue are removed. I am also having reconstruction. If I were in your shoes, I think I would have a third opinion by a Doc who has experience with your specific type of situation (as close as possible), then do whatever is closest to a majority opinion. However, It is your life and you must choose what is best for you. It's tough when there are no guarantees as to the precise outcome.

    You are in my prayers. seof

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