The difficulty of choosing optional treatment

Hi Catherine, 

I also went through this and was absolutely thrown by being given the choice. I was diagnosed with very small hormone sensitive cancer and had a mastectomy in November. I was told at my follow up appointment with the breast surgeon that my nodes were all clear and no chemo was needed. Of course I was thrilled to bits!

 It was at my first oncology appointment a week later that I was offered the option of 4 cycles of chemo before starting on Femara. My questions revealed that there was evidence of a tiny speck in one lymph node, something that the breast surgeon hadn’t mentioned. I explained that I couldn’t possibly make such a decision on the spot and needed time to think, so a follow up appointment was made for a few days later. These few days for me were more difficult than my diagnosis, all the biopsies and the mastectomy. How the hell was I supposed to make this decision? 

After lots of research, I arrived at the follow up appointment still not knowing which way I was going to go. One of my many questions I asked my oncologist was “What would you do in my position?”. She was reluctant to answer this but could see that I was still undecided. However something in her chat about the value of health lifestyle choices and exercise provided me with the moment of clarity I was looking for.  I chose not to have chemo and it and I haven’t had any regrets about my decision. 

Catherine, I wish you all the best in coming to your decision. xx

Julesy, I hope you don't mind me asking I was just wondering how you discovered it was in your bones?

Thanks Kath, that's exactly what I am checking out is the Oncotype DX. i'm going back to see me oncologist on Monday and will ask her all about it.

Hope you are well.

Catherine x

Oh Julesy, you are in my  thoughts and prayers. that is so sad. we are at the mercy of the advice we are given and you did exactly what you were advised.

Really good things are around the corner as per a good friend of mine who is a Doctor. They are starting to make all sorts of vaccines for breast cancer and esp the hormone sensitive ones so keep your eyes and ears peeled.

Seriously, you are a brave woman and thankyou so much for sharing your story with me.

Catherine xx

Thankyou Trudi and thanks for your honesty. that's what I need-time to sit and ponder and listen to my gut.

Cheers for replying. I am so glad you are well.

Bless you xx

Thanks Jane. As it wasn't seen in my lymph nodes that's when they give you the choice. but who knows what floats thru that we don't know about.

Cheers for replying, hope you are well. xx

thanks for your reply ScorpionQueen, I spoke to my oncologists last night and said I would come back to see her on Monday to do just that.

I seem to be in the grey area where i'm not low risk but i'm not high risk. as you say, I need some more answers.

Cheers for replying, hope you are well  xx

Perhaps you can look at the new oncotype DX test which determines your risk of cancer returning. There is info on this site about it. I believe you have to pay for it yourself. Failing this you could ask for the statistics with and without for your cancet size and type and take into consideration your age and health. ..all might be helpful. I'm have chemo due to her2 pos and ES pos. Kath x

Hi Catherine. My cancer was hormone receptive and very small so I only had a partial and radiotherapy. The surgeon assured me I did not require chemo as it hadn't reached my lymph nodes and put me on Tamoxifen for 5 years. I got the all clear and told to stop Tamoxifen even though 10 years is now recommended. My surgeon assured me thus did not apply to patients such as myself because my cancer was so small and yet  8 months later was diagnosed with secondary breast cancer to the bones! I asked should I have had chemo at the outset but every specialist has said they would have made the same call as the surgeon. I am not so sure. I was not aware of any tests available in 2009 to determine if chemo could or couldn't help. If I did would have had that test and would have stayed on the Tamoxifen or similar for the 10years. I am now taking Arimidex and it is working well and bringing my markers down. Take care. Thanks for sharing

Hi Catherine,

Mine was also hormone sensitive and I was told, due to its aggressiveness, I would need chemo ... 4 rounds over 3 months ... before radiation and hormone therapies could start. But then I was offered the opportunity to have the Prosigna test. Similar to the Onctotype DX test, which looks at 50+ genes to see if chemo would really be of any benefit. It came back today as a "No". So I got to dodge the chemo bullet. The test is offered to a particular type, so check with your oncologist. It's not cheap, but well worth it if it comes back in your favour. 

If the results had come back as a 50/50 chance, I would have gone the chemo route. But then I am one who wants to leave nothing to chance.

Good luck with your decision and I wish you well as you travel along this journey with the rest of us.

Hugs  San-Dee