My "choices" regarding treatment spelt out

Well said Melinda, I did everything suggested and am grateful I did. The last step was beyond my control. If I had the choice of whether to do chemo again, yes . . in a heartbeat. I guess it's hard to move beyond the feeling of having one crappy choice or another and resenting being in that position. I used to use the expression 'I want my life back' a lot during treatment and I have it back, altered but a 'new normal'. Treatment allowed me that. I just listened to an amazing podcast by the NSW Cancer Council called 'The thing about cancer' which has some great tips about coping with a cancer diagnosis. I really recommend it. It's also available on the Cancer Council website I believe. 

Lisa, one thing I learned through all of this the past 6yrs for me is, whatever you choose has to be what really resonates and sits for you. I remember sitting there with my Oncologist with no support and being told he advises chemo, I flew into defence. He said to me I can choose to not have it, but stats show used in conjunction with the Hormone meds certainly are better odds. I was sooo against Chemo, I didnt want to do it, was incredibly upset in my car when I left, thinking how the hell am I going to do this. I'm drug sensitive so I didnt even want to take Arimidex as I'd taken Tamoxifen for 4yrs and had a recurrence anyway. My situation was different as I was faced with a recurrence inspite of radiation, and tamoxifen. For me I figured I didnt have a choice, I had do it. Was it hard? absolutely, but I did it and with little support and being a single parent. Its doable, honestly and there are factors obviously you take into consideration as to your own personal circumstances. So I think really, this is about you, do what YOU feel is right for you nobody else. We dont know what is ahead, My Mum had BC and she was cured, 26yrs and passed away unrelated. I don't ever look at it that I'm in remission...it's a dirty word LOL, I'm clear 2 years and moving on, Ive changed everything about my life but only because I wanted to, not because it has any bearing whatsoever of recurrence, because nothing does. All I know is Im recovered, Im happy and enjoying life again, forever changed you bet!!! a better person? a better version?? absolutely. Big hugs Lisa in your decision, no right or wrong :) xo Melinda 

My doctors spent a lot of time encouraging me to have Tamoxifen after I finished treatment. When I had to give it up due to complications, my surgeon was fine with it and has never mentioned Tamoxifen again. I'm pretty sure the oncologist would encourage you to do whatever would increase your odds of beating cancer and surviving, and then respect the choices you make. Ultimately, your decisions impact on you the most - it's your life.

While personally I elected to have chemo, I do remember writing in the diary I kept (and still do sporadically) after my first visit to my oncologist, that the real crunch about everything my (very good but blunt) oncologist told me regarding his recommended treatment, was I CAN SAY NO. I didn't say no but I did have a choice. No-one can force you to have any treatment. Families can be mightily persuasive, we can rattle percentage figures around in our heads but no-one will strap you down and administer treatment against your will.  If someone who knows a lot more than you do (almost anyone when I was first diagnosed!) tells you this is what is best for you, it merits a bit of thought. But I am very sympathetic to quality of life issues, particularly for those who already have other serious or impactful ailments. If you are confident you can live with the outcomes (and no one can really guarantee much at all) then it's still an individual choice.

Hi, i had 6 months of chemo plus hormone tabs letrozole, handled chemo ok,followed by mastectomy and rads to start end of the month. I was never given an option for chemo.
My personal choice has always been that i would do ALL to ensure and know that i had done everything possible,  and not regret it later on. I'm  happy to do what ever it takes to stay alive or have the % reduced. 
Good luck and take care.

LisaO said:

For me it seems to come down to statistics, making a decision and then learning to live with my new self and remaining positive and confident in my decision.
What a horrid journey this cancer trip is. 

We all have to make the decision that is right for us and then do our best not to regret that decision if things don't go to plan.

A few weeks before my diagnosis I had lunch with a group of friends to celebrate life of one of our workmates who had just passed away. She chose not to have chemo as she had small children and felt that doing chemo would be too difficult. Sadly she spent her last few months desperately wishing she had chosen the other option. Her regret and sorrow at her decision was very difficult for everyone as it really overshadowed her time with her family and friends. 
At lunch we all promised each other we would never refuse chemo. Haha - that's very easy to do when you don't have cancer! 

Fast forward a few weeks and I was in my oncologist's office being told my own risk statistics. Personally my improvement was an additional 7% with chemo over just hormonal treatment. I explained to my oncologist that I couldn't live with myself if I refused chemo and the cancer came back. I said I was willing to accept the risks of chemo.
Now I am almost 4 years after diagnosis and sometimes I wonder what I would have chosen to do if I hadn't had a friends story influence me so much. I do have some ongoing issues with peripheral neuropathy but I do think overall I made the right decision for me. 

I'm not writing this to scare anyone into having chemo as that might be the wrong decision for them but it is important to think of all the possibilities and then make the best decision you can. For some the risks of chemo are too much and for others the risk of not doing chemo is too much. 

It's a horrible decision to have to make. Good luck xx

Hi @LisaO, my history - Grade 1, Stage 2, Eo +, PR+, Her -, tumour 2.7cm, satellite benign, 3 sentinel nodes 1 normal node - all clear, left mastectomy with immediate reconstruction using silicon implant. Tamoxifen - however long. My options were radiotherapy wasn't necessary as would do more damage than good. Chemo was going to be possibly 1-2% benefit and I was classed as low risk. I was offered having my breast tissue sent to america for testing to check recurrence % rate as my kpi was at 20%. I did ask as I was considered to be low risk without the test and a High result meant definite chemo, what did a middle range result mean? My oncologist was very honest and said she didn't actually know and we could cross that bridge if necessary. So, with that info on board I chose not to have chemo or testing. So far, so good & just passed my one year mark. Prior to pathology I had been told I was definitely having chemo, my cancer was believed to be very aggressive so I had bought my wig and had my go for it attitude ramped up and set on attack mode. All I can say to you is, you have your information base to work from, weigh everything up, consider all scenarios and then make the decision that is right for you. Big hug and wishing you all the best with your decision. Xx Cath

This is a very interesting question.  I tried to discuss something similar with my oncologist when I first saw him, and he said, "I can't say what would happen if you had no treatment, because everyone has the treatment".  Apparently this was not correct.  In any event my family would have dragged me to chemo, they were determined I should have all the treatment possible. 

My biggest fear with cancer treatment was chemotherapy.  I had a lot of anxiety during it.  I suppose partly because we have all seen horrible depictions of it in films.  I had nausea which I was successfully medicated for. I never vomited.  At first I was amazed to discover some women work through chemo.  But it is clear our reactions differ considerably.  You can't predict how you will react.  Most of us lose our hair, honestly this was ok for me.  Quite liberating for me.  More upsetting for others who looked at me.  Other side effects such as constipation were medicated ok.  But there are some chemos with potential long term side effects.  Many of us are very tired long after it's over.

I am interested if you can tease out why you don't feel comfortable with having chemo. Is it a quite understandable fear of it, or some other reason?   And will you be more anxious in the long run not having chemo and wondering if you should have had it, or having the chemo and dealing with the side effects?  

One thing I learnt  along the way was that it didn't matter if I wanted to turn up or didn't want to, if I was happy to turn up or unhappy, I just needed to turn up and have the treatment.  There is research that shows that what mental attitude we have makes no outcome to the success of the treatment, you can hate every moment of it and it can still work.  It might sound trite to some, but I find this very interesting.

My cancer counsellor said she had the job of trying to talk cancer patients who did not want treatment such as chemotherapy into having it.  And also helping people like me who were very anxious about it.  It might be worth having a session with a cancer counsellor, mine was very helpful.  And she knew a lot.  

So to to sum up, we don't know the outcome of our treatment, just statistics on a group of people. We don't know what chemo will be like until we try it.  
We don't know whether the short term pain of doing it is worth the long term possible gain of doing it.  
Nor do we know whether the long term negatives that might flow from chemo will outweigh the possible long term benefits of it.  
It's certainly tricky.

The statistic I like is that 95% of breast cancer suffers survive 5 years, this is terrifically positive.  

Useful books for me were  "Breast cancer taking control" by  Professor John Bayages which explains treatment very well and

"The emperor of all maladies - a biography of Cancer" by SIDDHARTHA MUKHERJEE which is not for the faint hearted but spells out the history of medical treatments for cancer.

good luck with your treatment.  Best wishes Karen

LisaO  My left breast had 12mm invasive ductal carcinoma tumour removed by lumpectomy and one node positive and two with changing cells.  I too was Oest & Progesterone positive and HER2 Negative,  My Oncologist also did the numbers thing with me also.  He said with the removal alone my chances were 20% of the cancer coming back.  Withe radiation and hormone therapy that would reduce to 13%. With chemotherapy the reduction would only be 1.5-2.0% more and being on the left side over my heart and lungs he suggested I do the radiation for 30 treatments and then onto hormone therapy and scans after 5-6 weeks of finishing radiation.  The difference between 13% and 11-11.5% chance of the cancer returning was negligible considering the effects of the chemo.  Radiation can only be done once in that one area, but IF the cancer is not gone or returns then I will consider chemo then again.  
By the way you can get another opinion from another oncologist.  I was rapt with my oncologist but not so with the radiation oncologist.  You need to be confident with the Dr you are putting your life in's hands.  And you have the right to a second opinion.  Of the few ladies I know of that have had a mastectomy have also had radiation.  You didn't mention radiation, but Im presuming you will have it.  
Read, ask questions, ask about another oncologist, do whatever is right for YOU.  Its YOUR body, your life.  Trust your gut feeling.  Another friend had similar was me at diagnosis and also did no chemo and fifteen years on she's still clear.  Maybe its got to do with luck and our energy and attitude to it also.  
Ive just finished 30 radiation sessions and going back to oncologist on Monday to start on hormone treatment and ask loads of questions as there are new treatments and test out there to be considered.  
Wishing you the best with your decision and know what you choose is the best for you with the information you had on board at the time.  keep posting and asking questions - the people on here are fantastic with their support and ideas.  They have been very helpful for me and when I do a huge rant or go crook about having bloody cancer the responses are fabulous.  :) <3
Remember the power of our minds.  Remember the aboriginal people who, perfectly healthy, but once they had a bone pointed at them, they actually did die.  Such was their belief and the power of their mind.  I believe we can do the opposite and the power of our mind can help greatly with healing - look into guided meditation, relaxation and whatever will help you relax and use the energy to help you heal.  Whatever works for you.  :) <3

My advice to you, Lisa, is be very careful who you discuss this with outside this forum. I had personally come to a similar decision that you have, chemo 'gave' me about a 7% better chance of survival over 10 years. I'd already done all that in 2006 and it didn't work then so I decided I wasn't doing it.

My son and partner had shitfits. If I'd said nothing to them, told them it went recommended for me, what ever, they would never have known the difference. But I opened my big mouth. In the end I had the wretched chemo ( bet it doesn't work this time either) because I couldn't stand the bloody pressure. Bless them, they love me, but I should have just shut up and not given them the chance to guilt me.