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Karensky's avatar
Karensky
Member
11 years ago

Deciding about Chemotherapy

I thought I would share with you my recent experiences in deciding whether to have chemotherapy or not.  My tumour was IDC NOS, Grade 2, Stage IIA, 25mm, ER+ PR+ (both 100% staining, strong staining), HER-.  It was associated with 26mm DCIS (labelled 'extensive' in the pathology report).  Ki-67 was 15%. 

I had a wide local excision with a return to surgery to get a clear margin on the DCIS.  No sentinel node involvement.  Based on everything I had read I expected to have radiation and endocrine therapy.  I did not expect to have chemotherapy.  When I visited the Medical Oncologist he said I should have chemotherapy. 

I was surprised and not sure this was necessary so I sought a second opinion.  I got a referral but was unable to access a Medical Oncologist to get a second opinion due to their heavy workloads.  I know Grade 2 is the hardest cancer to work out if chemotherapy is needed or not. 

So I decided to research my own second opinion.  I went only to peer reviewed journals  by doing a Google Search and through Biomed Central (Open Access as I cannot afford to subscribe)  and searched for recent evidence regarding chemotherapy for my type of cancer. There are many reliable evidence-based articles out there on this, as the issue of whether to treat these cancers with chemotherapy or not is a live one. 

From my reading I worked out that my cancer was probably Luminal A (which can be pretty closely worked out from the information on my pathology report). Single articles, however are not to be relied on as a sole source of information as they may have their own bias or study limitations (especially if there was a small number of subjects). 

I used them to get a sense of the situation and to understand some of the finer detail about my type of cancer.  Many of them referred to a couple of highly reputable international bodies - in particular ASCO and the St Gallen's Consensus (International panel of oncologists). 

I looked up these sites and found specific discussion on the value of chemotherapy for Luminal A tumours (and the current thinking on what makes a tumour Luminal A) in the 2009 and 2011 St Gallen's Consensus proceedings.   I also registered with Adjuvant Online and put in my characteristics to get a sense of the absolute risk reduction with the addition of chemotherapy to my treatment regime.  The additional risk reduction with chemotherapy was minimal if I was also having radiation and endocrine therapy.  So - the outcome is I have decided not to have chemotherapy. 

if I could have got to a second Medical Oncolcogist to have this conversation I would have.  This was an incredibly stressful time and clearly it is better to talk these things through with someone who is a specialist.  Everyone's prognosis is different and what is right for me is not necessarily right for anyone else.  But I thought my story might be helpful to those who live in areas where it is not possible to get a second opinion. 

I was not sure what to do.  I want to recover and I do not want this cancer to come back. I am not a scientist or a researcher.  I do not have a medical background.  I needed help to decide and found that the information to help me decide is available on reputable sites if I looked in the right places.

I hope this is helpful.  Best wishes to all of you in your journeys.

Karen

chemotherapy

2 Replies

  • Mich_x's avatar
    Mich_x
    Member
    11 years ago

    Hey Karen

    Your question regarding Femara.  I also already suffered a lot of joint pain etc. before my breast cancer diagnosis but to date have never had a true diagnosis but dont believe it is as bad as an arthritis diagnosis??

    I went in to one of my chemo onc follow up appointments complaining that the Femara was causing me excessive joint pain etc.  So he got me to go off the Femara for 6 weeks which somehow ended up being a bit longer than that :-) and then went back on it and then went back and see him to report what I found.  I honestly couldnt say the pain changed either being on  or off the Femara so any pain and stiffness I have these days I wont just automatically blame Femara.

    Once again just my thoughts on Femara, every single person is different with regards to this as well I feel.  I was on Arimidex originally for one month which was total hell with mainly excessive sweating in the middle of winter all day every day plus numerous other side effects.  I was put on Femara and there is no comparison of the two.

    I am on Clonodine/Catapress for my hot flushes which was originally prescribed to me by Menopausal clinic at KEMH.  Works at treat for me at the right doseage of 3 tablets which I built up to rather than strong dose straight away.  

    Hope that helps 

    Luv always, Mich xoxoxox

     

     

  • Mich_x's avatar
    Mich_x
    Member
    11 years ago

    Hey Karen

    Thank you so much for sharing your story with us.

    You may not be a scientist, doctor, oncologist or researcher but obviously from reading your story I get the feeling that you are very intelligent.

    I was stage II and at the time did not hesitate to have chemotherapy as not having the intelligence, time, knowledge etc. etc. to research further I just put my faith into the Medical Team who was dealing with my diagnosis.  

    I had a lumpectomy and sentinel node biopsy where 2 nodes (micromestastes) -spelling sorry- were involved and then I had total axillary clearance where no further nodes were involved.  They did not get a full clearance of the tumor due to being too close to the chest wall.

    I decided at the time that I would do whatever was necessary to remove the cancer from my body which meant the surgery followed by 6 doses of 2 different chemo's and 37 sessions of radiotherapy. I currently have another 3 1/2 years of Femara to contend with and I had no hesitation in having this treatment.

    If I had my time again with having the knowledge I have now and with what I have been through I would have to really consider my options but I honestly think I would put my faith in my Medical Team once more and deal with the consequences so to speak.  Chemotherapy is one of the most scariest things we will ever have to contend with in our whole lives I believe but I would do it again if it meant saving my life as I not ready to die BUT I would go in to it being much fitter and healthier if possible.

    This is my story which as you say every single solitary persons story is different and I can sympathise 110% in that it must have been an extremely stressful time for you in having to come to your decision huny as it is a real real tough one.  I would like to say that heaven forbid that if I had to ever go down this horrific track again I would like someone like you on my side doing the thorough research for me.

    I am sure you have decided and I hope you run with that decision and dont look back and dont have any regrets.  We all have the fear that our bloody cancer may return whether we have had chemo or not so living with that "after fear" is always there.

    Luv always, Mich xoxoxoxoxo