Has anyone with Her 2 breast cancer who has had a complete pathological response and no lymph node involvement not done radiotherapy and just continued with herceptin treatment?
I had her2 that for reasons that are still somewhat of a mystery, was declined treatment of herceptin. Hopefully surgery got it all but it was to the end of margins in 2 directions as no more tissue to take. I did have radiotherapy with extra boost, so quite a lot.
Choices over treatment are a personal thing. However, if considering options its wise to go over all risk factors with your breastcare team. If you had a lumpectomy and your margins were good - I suppose they are with a CPR - then that is a positive. I think its probably wise to consider other factors such as grade and PI %. Its an interesting one to ponder, you’d hope that any possible cells that may or may not have escaped the area would of got the same response as the original tumour.
Treatments dont bring certainty, as much as less treatment doesn’t necessarily mean a recurrance. There are no certainties with cancer and you realise that once you’re on the journey, you enter a realm of likelihoods and statistics one way or the other and life gets filled up with weighing up risks one way or the other and trying to balance that against the effects some treatments cause. Nobody would choose to be in our shoes, its a difficult one. So its better to make a decision in conjunction with the oncologist.
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I think thats why I am so confused it a 1% difference on predict at 5 years and 2% difference at 15years, so they want me to think it over and let them know. As you said it would be easier if they could give a definitive answer. They dont want to do a boost if I say yes, just 5 treatments. They said given my age I would normally get a boost, but given my surgical response they wont. I feel like I do not fit in any one box for them.
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I had complete pathological response from chemo, no node involvement but still had 9 rads. It was 4 1/2 years ago so things change?
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Have you had any side effects from the radiotherapy?
My skin went very slightly pink after a day or so but no discomfort. After about 6 months I got some shooting pains (possibly nerves reconnecting) but not really painful. That’s happened on and off for a couple of years. To be honest, now I’ve thought about it to reply to you, I realise it has stopped pretty much now. The whole thing was really not a problem. Good luck with whatever you decide.
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Not everyone fits the boxes and its probably a good thing that treatment does get tailored differently to fit the situation. You could see that as a good thing here. They have adapted the boost standard for your age, because you had an excellent complete response.
Its not really helpful to look at predict of 5 or 10 year outcomes with radiotherapy- I think it says this in the small print. It is known that radiotherapy doesnt have much improvement long term with mortality rates( that is why its 1-2% for everyone on predict). Its benefit is in prevention of local recurrance which predict does not give values on ( only mortality rate). Don’t look at predict as a tool giving recurrance rates as it doesn’t.
What is known is that if you have a lumpectomy and radiotherapy, the local recurrance rate is similar to if youd had a mastectomy, that is the point of it.
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Thankyou for putting things into perspective. I have heard back from my oncologist who said my rates of local recurrence are approx 3 to 5% and with radiotherapy they drop to 1.5 to 2.5%. So I guess I need to think about whether I think it is worth the Side effects.
A quick google chucks up various different pieces of research that have looked specifically at 10 year recurrance rates where the outcomes are in the region of 10-15% benefit. I suppose it depends what figure you’d be happy with.
Down the line, after active treatment is over, for years after there is always a background consideration throughout life that recurrance can happen. The thought lurks in the background for everyone who has been through a cancer diagnosis. How prominently the thoughts lurk in everyday life is connected to treatment had. I do know that knowledge of possible under-treatment, makes those thoughts resurface more. Compounding it is working out what symptoms are down to hormone changes (due to age, AI’s, tamoxifen, and possibly chemo) or a possible sign of recurrance (more aches & pains, tiredness, brainfog etc). You may find youself wondering about it more with underlying knowledge of declining treatment.
Having said all that, I stopped tamoxifen due to side-effects, but that was after experiencing the effects, and with knowledge of it being reversible if I stopped, set against good reasons why it might be less effective anyway, in my case. Unfortunately, you can’t go back after radiotherapy, but in general affects wear off after a few months.
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I think I have been down a lot of google rabbit holes, but none quite fit me situation due to everyone being an individual.For me, it is about the local recurrence rates for 5 years as that seems to be when the majority of HER2 positive hormone negative makes a local comeback, and radiotherapy only deals with local. I have time to think about it and talk to my consultant again.
To my mind radiotherapy covers exactly the timeline where her2 does come back and assists with local recurrance. You are correct in distant recurrance not assisted by radiotherapy in general. Chucks up a thought of whether most her2 recurrances are local or distant, but you’d have to find cases with or without radiotherapy, which could be a tricky find as most people probably go with what their MDT plan and have the radio if suggested. The chemo and herceptin hopefully covers distant possibilities. As I didn’t get that, I’m kinda left crossing my fingers and hoping no cells escaped, but as no lymph node involvement myself, its maybe unlikely. That made it clearer the importance that radiotherapy had for me. Tough choices when not clear cut. If I’d been told I needed chemo and herceptin, I’d of had it, if I’d been given it as an option and had to be the one to decide, I have no idea what I would of done. I suspect its rare that decisions are totally passed to patients as only an oncologist has all the training and knowledge that we can never catch up to, so if they cant decide,and are boarderline on it, the personal part it how you feel about the treatment. So it could come down to what you fear about radiotherapy and are those fears realistically likely.
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