Decision to have chemo or not

Hi

I had similar to your friend, but Grade 3, 20mm tumour, clear margins, no lymph node involvement, ER/HR +ve and HER2 - ve. I opted to have the chemo. My chemo drugs were different from your friend's, except for docetaxel which was part of my regime.

I agonised about the decision to have/not have it. In the end what swayed me was that the thought that if I didn't have it and there was a future recurrence I would always wonder whether it would have been avoided if I had opted to have it. It's a daunting prospect certainly. I finished my sessions in September and my hair is just starting to grow back and I am feeling pretty good now. I suffered many of the usual side effects, but to be fair, apart from the hair loss, very dry nails, neuropathy in my feet and fingers and residual fatigue, none of it lasted more than a few days at a time. I am glad I did it and have not regretted the decision. I also had RT after the chemo.

It's a very personal decision. I would advise your friend makes a list of the pros and cons for her. That helped me to make my mind up. 

Good luck

I had a similar scenario to your friend. I chose not to have chemo as the most important thing to me was quality of life over quantity (I also don’t have children so my priorities are different). I had a full mastectomy and radio and completely overhauled my lifestyle. 
I also chose not to take tamoxifen as the side effects were not worth it for me (I did try it). Recurrence can happen no matter what you do, I don’t think anyone can tell you otherwise.

People will all give their opinions and some will be quite bullish about it. But they don’t have to walk in your shoes. Choose what you feel is right for you, as you have to live with the decision and what ever side effects come with that. No one else has to, only you.

I have no regrets about my decisions. What I chose was right for me.  It has to be your friends choice whatever she decides to do. Everyone is different.
my advice is that she has to make the decision for herself and be perfectly comfortable with that decision,  whatever that is. 

Research everything, knowledge is your best tool.

Thank you so much for your thoughts and insight. If you don't mind me asking, are you still experiencing any of those side effects mentioned above (and if so, have you been given any indication as to whether they will eventually go away)? With respect to chemo my friend is worried less about the fewer-than-1% severe side effects, and more about the possibility of things like the neuropathy or fatigue/breathlessness being longer-lasting or even permanent. 

Thanks for sharing your experience. We've been struggling to find experiences of people that chose radio so its really good to know that there are some out there! I agree that we'll never be 100% certain on recurrence whatever choice is made

Some people get lucky with minimal side effects, I think most people have some.

i have developed lymphadeama from the radio which is my worst nightmare. And I have bone pain and fatigue. These are life long side effects so my oncologist tells me. I have been one of the unlucky ones with the pain, only a small percentage get this. Some days it’s manageable other days it’s exhausting. 
What helps me the most is eating well, trying to maintain a healthy weight and surfing. Wearing a wetsuit is the same as a compression sleeve so that’s a bonus!

if I’m honest, I regret doing radio. The surgeries (I’ve had 3) were fine. I have always remained firm in my path and would rather have a short life with no side effects over a long life with side effects. I was talked into radio.

But this is a deeply personal decision. no one can tell you you won’t have side effects. 

the pros and cons list another member suggested is a good idea. I did this. It does help with forming your decision. 

and it is scary because you just don’t know if it’s the right decision or not. 

I absolutely don't mind you asking :-)

So, I finished 4 chemo sessions on 8th September - nearly 4 months ago. During the chemo period I had the usual tiredness, lost my sense of taste, was exhausted, and had the occasional bout of nausea. Those symptoms only last a few days afyer each infusion. I would start to feel better just before the next one! I had my hair cut short and then shaved as I really did not want to experience it coming out in handfuls. It gave me a sense of being in control. Docetaxel makes it fall out for sure, although you can choose the cold cap treatment which will probably save some of it. Cold capping adds an hour or two to each chemo session though, and I didn't fancy that.
A couple of weeks after the chemo finished I started to get the pins and needles sensation in my feet and toes and the tips of my fingers - that is neuropathy. It is going better now but I do still have it, particularly first thing in the morning. Some people get it badly and get pain with it, but I had no pain. For a tiny minority of people they have the neuropathy permanently but my oncologist said he thinks mine will go completely over the next few months. I have been having reflexology sessions which have really helped, and I massage my feet regularly with a peppermint foot balm. Apart from that I feel better every day and am starting to enjoy life again.

I had no breathlessness and the fatigue has gone away. I do exercise several times a week and that really helps me with energy levels and just to generally feel good. 

I had no side effects from radiotherapy apart from a mild sunburn sensation and possibly a bit of tiredness. I just had 5 sessions.

I hope that helps.

I had a similar situation with Grade 2 Er positive BC but with two nodes positive as well. The oncologist said it was up to me if I wanted chemo and depended how risk adverse I was. The benefit of chemo was potentially “up to 3% benefit” on Predict. I did lots of research and asked lots of questions to AI and it seemed there was no or little benefit for me to have it. I then asked for a follow up face to face with my oncologist and asked would he have chemo if he were in my position and he said he wouldn’t due to the potential side effects. Perhaps your friend could ask the same question? He also said in my second meeting it would be better to keep chemo as a trump card if it came back as cancer can develop resistance to the chemo drugs. On that basis I just had radiotherapy which was tolerable and now starting letrozole and then ribociclib. Good luck with deciding! 

I didn't know you could get such severe side effects from radiotherapy! It really does feel like a lose-lose situation sometimes!

Hi,

I had a similar diagnosis to your friend, and was offered chemo.  I declined, as the prognosis with chemo was a 5% extra ‘possible’ cure rate, after 10 to 15 years.

I looked at it the other way - even without chemo, I still have a 95% chance of still being here in 10 to 15 years.  

I asked my oncologist what he thought, he just said he agreed that it was a very small margin of ‘cure’ rate.  I’m going to be 68, so 10 years takes me to 78, 15 to 83.  Don’t get me wrong, I really want to live well for as long as I can, but my oncologist said he had people who wanted everything thrown at their cancer, even if it was a one percent possible additional cure rate, and were prepared to suffer side effects (even long term ones), so we each have to choose, unfortunately.  

My advice (for what it’s worth), is make your decision on what you know and feel now, you can’t predict the future. 

My mum had bladder cancer at 73.  Had her bladder removed, and has lived with a stoma ever since.  We were told at the time her condition was terminal, and she was not offered chemo or radiotherapy.  

At 99, she had squamous cell carcinoma removed from both her forehead and eyebrow area, and will celebrate her 101st birthday on 4th February.  At this rate, she’ll outlive me!

All the best,

Pollyanna x

You are a good friend and I do understand that this is a difficult decision and so many options.  Always important to look at the science and what the clinical trials indicate is the gold standard for treatment at the time.  Side effects can occur with any medication or treatment and it would be nice if we knew how we would fare but not possible.  Your friend did very well with surgery and that is a hurdle.  One of the test results the HER2 low should be discussed with the oncologist as it is now treated with chemotherapy and I am wondering if that is why he is recommending chemotherapy.  Also with the prosigna gene test showing intermediate Dr wants your friend to have the best chance for a cure.  
I was 71,when I had DCIS in right breast and stage 1 grade 2 ER and Pr positive and HER2 negative results  for both.  Had bilateral lumpectomies and then radiation to both breasts with a boost of 5 extra to the right side as margin was close on one side.  Was on anastrazole for almost 3 years but changed to letrozole because I had side effects and wanted to change. Radiation to both breasts was a hard decision for sure but I am small breasted and knew if I had a recurrence it would mean mastectomy either way and wanted the best chance of a lower risk of recurrence.  I would love to tell you that I knew what is best for your friend but it is a personal choice.  My advice is follow the science.  Take care.