Recurrance questions

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calger
calger Member Posts: 6
edited June 2014 in Second or Third Breast Cancer

Dear fellow travellers,

I have been diagnosed with a recurrance. I had breast cancer back in 2002 and was hoping to celebrate making it 5 years cancer free. First time I had a lumpectomy. This time I have had a double mastectomy. I wanted to get reconstructive surgery, but I could not get agreement from the doctors regarding which procedure to opt for. I was advised to see the forest through the trees - in other words, get rid of the cancer and worry about reconstruction later. It's a shocker to look down and see my feet, (I was a DD before the surgery.)

Here are some of the questions I have.

Is a recurrance staged like the first cancer? I haven't seen anything in the literature about staging recurrent cancer. As a matter of fact, when the biopsy was done, none of the tests (eg. her2) were done. The report just said "similar to cancer in 2002" (poorly differentiated invasive ductal carcinoma.) My onc had to call them to do the tests. Is this normal?

My onc has asked me if I want to be in a clinical trial where I will be randomly selected to either recieve chemo or not receive chemo. She says that there is evidence that chemo treatment for recurrance does not effect outcomes. (In other words, people who don't have chemo don't do any better or worse than those who do.) Has anyone heard of this?

I have also been looking for information regarding the average number of chemo treatments and the time lapse between those treatments. Last time I had 8 treatments 3 weeks apart.

Many thanks for your help. I wish all of us well.

Chris

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  • mke
    mke Member Posts: 584
    edited November 2007

    Are you sure that this was a recurrence?  I ask that because I've had BC twice and it was not a recurrence because the characteristics of the tumors were different, first one was ER/PR + and the second was ER/PR - and her2+.  It seems very strange that tests weren't done after the biopsy - were they done after the mastectomy?  You really should at least know if you are her2+.

    I didn't have chemo the first time.  I think for some types of chemo you only have them once, I suppose they are too hard on your heart to be repeated.  There is some recent research that indicates that the taxanes don't have much effect on hormone positive BC (at least I think that's what it was - check the files).

    More people are doing "dose dense" chemo where they get treatments 2 weeks apart and usually get an injection to help with their white blood cell production.  That's what I did (8 rounds), before surgery to shrink the tumour and to see if the chemo was effective.  I had a good response to the chemo so had another lumpectomy.

    The chemotherapy forum might have better information for you.

    Sorry I couldn't be of more help, good luck.

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  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited November 2007

    The important question is whether or not this is a recurrence or a new primary. Is it in the same quadrant of teh breast as your original? Same characterstics (hormone receptors, her2neu)?



    I don't believe you can make any chemo decisions until you know more about the cancer. This has to be a decision based on the risk posed by the particular cancer.



    Also, what is this about doctors not agreeing on reconstruction, so you don't get any? Its your decision. If they disagree on what is best for you, try to weigh the options and risks and tell them what you want.

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  • Jellydonut
    Jellydonut Member Posts: 1,043
    edited May 2008

    Calger,

    Welcome to BCO, but sorry the need arose to be here.  You will find the most wonderful, caring and knowledgeable group of women and men here.  Many know more about breast cancer than most doctors I've met.

    I'll address your recurrence question:  A recurrence in the same breast is not staged as it is in initial diagnosis.  It's considered a "local" recurrence, if it's the same pathology as the first cancer and yours sounds as though it is.  Would recommend getting a copy of the pathology report completed after your mastectomy as that should give you more details (a more comprehensive report).

    When I asked my surgeon for my mastectomy report, he replied, it wasn't done, I'll order it now.  Well, four months later I received it and it was comprehensive.  What I've learned in this cancer journey is that each hospital does things differently.  If it's bothering you to know, you may want to talk to your surgeon, or onc, and ask if it's possible to determine the HER2 status, etc.

    I did not have chemo and cannot speak to those questions, but the smart ladies here will come by to help you out.

    Yes, it's quite a shock to see the floor!!! 

    Sending you healing hugs.

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  • calger
    calger Member Posts: 6
    edited November 2007

    Dear Friends,

    Thank you for all of the responses. I can see that I need much more info before I make decisions about treatment. They have called my cancer a recurrance because it was initially misdiagnosed as scar tissue from the original lumpectomy. I should have the path report when I see the oncologist on Wednesday.

    As for reconstruction, the issue was what is the best course to take - expanders or a tram flap. Both doctors were using the same information to support their views. I have to say that the mastectomy is much more traumatic than I thought it would be, but I am coping. Teary eyed frequently, but I suspect this will get better with time and eventually with reconstruction surgery.

    Again, thank you for the information.

    Chris

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  • Jellydonut
    Jellydonut Member Posts: 1,043
    edited May 2008

    Chris,

    Yes, I remember the tears too and it does get better in time.  Breast cancer is a long journey but we're glad we're still here to discuss it and help others.

    Have you considered contacting Reach to Recovery?  Although I cannot give a personal testamonial, as I did  call them but no one ever got back to me, some women here had a good experience with RTR.  You can reach them through your local American Cancer Society. 

    There is also a chat room here on BCO that you may find beneficial.

    Of course the boards are always open and usually there's someone here to answer questions, etc.  As I stated to someone earlier, use us for all we're worth...and that's a lot, lot, lot.

    Keep posting to let us know how you're doing.

    Healing hugs,

    Dee Dee

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  • anita-S
    anita-S Member Posts: 11
    edited November 2007

    Hi Calger,

    First, so sorry to hear about your recurrence. But at least you know what to expect and can remain strong for the fight. I too have had a locoregional recurrence after 3 years of NED. Anyways, no, they do not re-stage the recurrence, but if its in the breast, its local recurrence and if in the chest and/or lymph nodes, its locoregional recurrence. However, its important to know the path. characteristics of the tumor.

    I too was told by my onc that chemotherapy may not be useful for recurrence and makes no difference for long-term survival...blah blah blah. I STRONGLY disagree! While there is not much in the literature about treating recurrent bc, I DID manage to dig up quite a few articles, where the consensus seems to be to treat recurrence as aggressively as the initial diagnosis. And it makes medical sense, as you are still curable at this stage, so why not blast away at it? If I were you, I would insist on chemo [after you find the path results], do radiation and then move onto reconstruction. But PLEASE be as aggressive as possible, always keeping in mind that you are still curable with regional/locoregional relapses!!!

    Good luck,

    Anita

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  • GoldenEyes
    GoldenEyes Member Posts: 180
    edited November 2007

    Hmmm

    I am now stage IV, but curable.. I have had 3 recurrences... and all 3 times I have had chemo. surgery.. Please dont give up.. Keep fighting... I am now on Xeloda and Tykerb....

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  • calger
    calger Member Posts: 6
    edited December 2007

    Dear Anita and Golden Eyes,

    Thank you so much for your comments. It really helps me to hear that you are all fighting this disease with all you've got. I will have my first chemo tomorrow. Cytoxan and taxotere. I am truple negative this time and hope that this cocktail is appropriate. There seems to be so little out there from which to decide the best action.

    Again, thank you.

    Chris

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  • marygeorgene
    marygeorgene Member Posts: 1
    edited January 2008

    I had BC with mast lymph nodes postitive er+ Apr 06 with chemo and rads. Then in Sept 07 the very same cancer settled in my lower eyelid!! had surgery and just finished rads..Onc does not want to do chemo yet until it show up elsewhere. I have not found anyone who had a recurrance in the eyelid. Anyone else?

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  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited January 2008

    marygeorgene -- I never heard of such a thing -- but I have had a pain in my eyelid all weekend that at first I thought was a stye/conjunctivitis, but it's not red and gooey -- just sore!

    kind of a crazy moment for me to read about recurrence in the eyelid!

    I'll be eagerly watching to see what anyone else may have to say.

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  • AnnNYC
    AnnNYC Member Posts: 4,484
    edited January 2008

    calger,

    the only trial that I've heard of that assigns women randomly to chemo/no chemo is the TAILOR Rx trial based on the Oncotype DX genetic test:

    http://www.genomichealth.com/oncotype/tailorx/

    but it seems like you would not be eligible because you would have to have: "no prior ipsilateral or contralateral invasive breast cancer, bilateral synchronous cancers, or prior ipsilateral or contralateral ductal carcinoma in situ."

    Maybe there is a similar trial that involves local recurrences -- but I'm not aware of it.

    My oncologist described the whole trial to me -- but for some reason I was ineligible?  or maybe I didn't want to be randomized? -- if a tumor is ER+, PR+ and Her2-, and nodes are clear, the OncoType DX test is valid -- at least for first occurrence of cancer.  The tumor is tested for genes, and the results give a score for the likelihood of recurrence.  If the score is 10 or less, the TAILOR Rx Trial assigns no chemo, hormone tx only.  If the score is >25, Trial assigns chemo plus hormone tx. It is the women who have scores from 11-25 who get randomized to chemo or no chemo (with hormone tx in either case).

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