NEVER HAD CHEMO

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I was first diagnosed with IDC Grade 1 ER/PR + HER2- at age 29 IN 2003.  Had a lumpectomy and radiation. In 2008 noticed thickening in right breast and had follow up negative mammos.  Ultrasound and Breast MRI picked up new IDC in left AND right breast.  Had bilateral skin sparing mastectomy in 2008.  Just found out 2 weeks ago that small lump in mastectomy scar is recurrent cancer AGAIN.  All tumors have been 1cm or less with negative nodes. Pathology from all cancers as Grade 1 or 2, with low proliferation Ki-67 scores and ER.PR +, Her2 - with negative nodes. Had recurrence while on Tamoxifen. Trying to decide on treatment now and getting conflicting recommedations regarding chemo vs. hormonal therapy only. Anyone out there who has had recurrences and had success with homonal treatment that shuts down ovaries (Zolodex) with AI like Arimadex? Don't know whether to do homonal treatment with chemo or just hormonal treatment alone. My understanding is that chemo is not that effective with slowly dividing tumors. Making these decisions is always the hard part....

Comments

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited September 2009

    If it were me I would do everything.  I have also heard that chemo is not as effective with slower growing tumors but that doesn't mean it is completely ineffective.  I've heard that for such tumors a protocol like FEC might be more effective than AC plus whatever.  Then you could do the hormonals.  You've been through enough, I think you should finish off the beast completely.

  • London-Virginia
    London-Virginia Member Posts: 851
    edited September 2009

    Gem - what bloody rotten luck, I am so sorry.

    Chemo - I just started doing 6 x FEC.  It is considerably more doable than I anticipated (and I was pretty  commited to doing it so was positive about trying hard).    I'd describe it as 3 or 4 days feeling rather seasick (alleviated by drugs) then better day by day.  Have got upset tummy and sore tongue, otherwise fine.

    Don't know if chemo can help you, but take heart if you do decide on it  - it's not so very bad.

    All best wishes to you 

  • Lindaip
    Lindaip Member Posts: 39
    edited September 2009

    Mine was also a slow growing tumor (called diploid). My oncologist recommended 4 A/C and 4 Taxotere t reatments. He said they had "better results" with this regimin. I finished chemo 7years ago. A was on Arimidex for 5 years and am now on a clinical trial where I may be getting Femara or I may be getting a placebo. Good luck.

    Linda Dx 2/27/02,IDC 2CM with one 3CM node (out of 11) ER+/PR+, HER2-.

  • gem07
    gem07 Member Posts: 2
    edited September 2009

    I really appreciate everyone's replys.  It really helps to hear about other women's experiences who have had to make similar challenging choices. My biggest fear about chemo is the 1% chance that I could get an incurable lukemia.  Don't want to trade one cancer for another.  Has anyone else ever had this fear? Anyone out there who has not done chemo and opted to have ovaries removed?

    ______________________________________________________________________________

    DX 06/2003 Age 29, IDC 6MM, 0 nodes, ER/PR+, Her2-, Rads, Lumpectomy; DX 03/2008 left and right breast IDC 1 cm, 0 nodes; Grade 2; ER/PR+ Her2-; Oncotype 12, bilateral mastecomy,DX 08/09 4MM IDC right breast Grade 2; ER/PR+, Her2-

  • sian
    sian Member Posts: 23
    edited November 2009

    Hi

    I am in a similar situation, I was first diagnosed with a 3.5cm tumor to left breast in 2004, then 4 1/2 years on developed a 3cm reocurrence to the left axilla tail.  I failed on Tamoxifen despite being 100% er positive.  This time I have been treated with radiotherapy in the US, (i live in the UK) and am on Zoladex and Femara.  Both my oncologist in the UK and the US have advised me against Chemo at this time.  I know you can only have any type of chemo once, then they have to try another kind and so on.  I have been told to save it untill I really need it.  I don't know if that was good advice but both oncologists have told me the same thing.

  • Fantomia
    Fantomia Member Posts: 16
    edited January 2010

    I had a recurrence - or a new cancer - no one can tell me for sure - 14 years after treatment in the same breast (in the scar). I was recommended to remove my breast since I couldn't have radiation in the same breast the 2nd time bud I refused. I decided to do surgery first, and let them examine what kind of beast I had this time. I knew the last one was of a non-aggressive sort (low proliferation, ER+ PR+ HER- and about 1 cm) If it was of a more aggressive kind this time I would consider mastochemy, but I just didn't want to remove my breast "just in case" (if the male doctor was arguing strongly with me I was prepared to ask him if I would remove his dick "just in case"). But there was not found anything that could lead to assuming it was a different kind. (ER+ PR+ HER- this time also, + low proliferation, same size). The tumour was removed with 10 mm better clearance than last time. Then they offered me chemo + anti hormones - especially because "if it was a recurrence there could be a chance for mets". There was not taken any tumour markers before surgery, and they was resistant doing those tests after also = they had no plan for monitoring the success of the treatment. And I had to insist on getting a scan of my bones and my liver. (witch both showed up to be negative). The oncologist was very unwilling to give me reasons for her recommendations when I wanted proof for beneficial of my personal disease, she she then turned into "I'm a very busy lady" and once she even hang on the telephone while I was talking to her. But she gave me an address for an internet site (adjuvant.com) where I could plot my disease details to prove her recommendation. I did so, but the sites risk-calculator had very poor variables - it was for instance not taking the HER or proliferation into consideration. And it was measuring the risk for dying of breast cancer within 10 years - not total risk of death (what about them dying form other diseases because of a poor immune system cased by the chemo?). I had been without cancer for more than 10 years.

    The oncologist also threatened me with not wanting to be my oncologist if I didn't take her treatment, and added in the same hostile way that I could always have a second opinion on another hospital. I said "yes thank you". The second hospital recommended the same treatment - with no better reasons ("it is shown that everyone have benefit of this treatment" without being able to give me any research specific to my kind of cancer - there are national agreements on how to treat breast cancer in Norway - and maybe everywhere else).  But they did take a tumour marker - the MUC1 it's called here, it's the same as CA 15-3, and it was fine. I also got some other tests. When I got the results I called them and talked to another doctor that had been participating in making the national recommendations for treating breast cancer. All the results where good, and he said that the fact that there was no proven malignity of my new tumour compared to the old one could mean it was a new cancer. I did get radiation in this breast - what if the radiation caused the 2nd cancer? It certainly did not kill the cancer cells, if I had any left at the moment I got the treatment. Later I've persuaded my regular doctor to do other tumour markers and they have also been negative.

    I do not want to do chemo without being sure I have benefit of it. My way of understanding fighting against cancer is about raising the vitality - not lower it. Chemo is also shown to heighten the risk for another cancer later. I think it's strange that they want to push that poison on us, but so unwilling to do tests. But then again, if they do test, and a lot of them shows no cancer, it will not be so easy to push the drugs. Majority of the doctors are in the hands of the drug industry IMO. And I will even call it a mafia. Here in Norway where we have free treatment, the international drug companies take a huge part of the money for social security. I've also been googling for research I can participate in. But all the research is on drugs, and not on the reasons for the disease.

     Mia

  • MsBliss
    MsBliss Member Posts: 536
    edited February 2010

    Dear Fantomia,

    If you are sure you will not go the chemo route (I didn't either, and I had triple negative), please make sure you build up your health and do evidence based work.  High Vitamin D, curcumin, fish oil, immune building mushrooms, gamma E, indole 3 carbinol, sulforphanes, and more.  Do your research and make sure you use high quality evidence based protocols.  All my best.

  • VBK1944
    VBK1944 Member Posts: 22
    edited February 2010

    Hi Sian, I have a very similar tumor profile to yours. I was wondering where your tumor was...1 O'clock location or? Its my understanding that the location of the tumor can "predict" nodal recurrance location. also, did you have mastectomies and chemo or rads? If chemo what regime..AC then T, dose dense or every 3 weeks? I finished the dose dence AC-->T regime 07/09 after bilateral mastectomies 01/09. Hope you are doing well...Vb

  • ruthbru
    ruthbru Member Posts: 57,235
    edited February 2010

    If it is keeping coming back, maybe you need to do the chemo to knock it out once and for all? Chemo is icky, but doable.

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