NEVER HAD CHEMO

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 

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 2^nd 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 2^nd 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

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