After my diagnosis, grade 3, good margins no obvious spread, chemo was strongly advised, then rads as tumour high grade, so as to ensure mopping up any possibly spread no matter how small the likelihood. Started in August, not coping too well. But turns out now I am Her+(result seems to have taken ages to come through)which explains high growth without spread. This is making a difference to my thinking on whether to carry on with chemo, I have had 3 epi so far. And hated it. Horrible side effects. I have always suffered badly with nausea in loads of situation and the sickness on epi has been like nothing i’ve ever experienced. Onc says ok to dropping last one and possibly moving on to cmf but have option to go straight to herceptin. However, no decision till see onc next week.
Whole problem with making the decision is there are no hard and fast rules. Doctors first advise taking all treatment available which seems logical but they don’t have to deal with the side effects and toll on family life! I have found it very encouraging reading about people who have dealt well with treatment or pushed on through even when suffering with side effects. But not sure I can do it.
My son is in his final GCSE year. For 2 out of 3 weeks I am just not there for him as I should be and there is no body else. Onc says as Her+ and spread less likely chemo would make only a little difference in the long run. However, Herceptin, as I understand it, should guard against recurrance in next few years. I want to be there with and for my son now, not lying around being sick and tired. If I take a complete break, the treatment i’ve had so far will have helped. If recurrence is the most likely problem rather than spread is that something that can be dealth with when it happens, unlike secondary spread which I know is so much harder to treat. On top of which I could start Herceptin next year. When this stressful time is over. Or am I being really naive? I know I’m partly looking for a reason to stop this horrible treatment, but I genuinely feel that the quality of our lives now is just as important as me adding length to mine. I’m 47 and now is when my son needs me.
My friends and family of course are trying to make me carry on with everything and I understand why but it adds pressure. And the onc has protocols to follow although I’ve found him quite sympathetic. I would appreciate comments from anyone else out there who can see my point through my rambling!
If you are the only one there for your son, he is only 15/16, far too young to lose his mother. I think it is more important that you are there for him long term, and not so well now, than well now but not there in the future because you get secondaries. If you have just 3 or 4 cmf’s to go, that is not such a long time when you are considering the rest of your life. Also, you may fare better on cmf - who knows?
Can you get more help from family and friends to get you through this period?
Your tumour was grade three - the most likely to spread - so personally I would take all treatment offered to try to prevent this (and I did take it for myself - did 4 FEC & 4 Tax last year, currently done 15 out of 18 herceptins, so I know what it is like). It is so hard going through chemo, it seems to last forever, but believe me, it doesn’t, and you will get to the end and feel well again.
I really feel that you should grit your teeth and bear it, if at all possible. The treatment doesn’t last forever, even if at times you feel you’re in an endless dark tunnel! I agree with roadrunners’s comments-do as much as you can now, to safeguard your future as far as is practical. If you could enlist some help with the practical issues-even help with preparing meals, ironing, etc, can take away a lot of the pressure.
You’re half way there-please try to stay the course-it just might make a difference to your longer term survival prospects. Good luck.
Just read your diagnosis which sounds very similar to mine. Im 41 and have IDC grade 3, Her2+ (only just got my results a few weeks ago as they took ages too) and have no node spread. I had lumpectomy back in May and have just had my 5th cycle of FEC. I had really bad sickness the first two cycles and ended up on a drip the second cycle as it was awful. Ive had my antisickness meds changed which has helped but I was sick this last cycle but not as bad as before. I hate the chemo. Can you lean on your family and friends a bit more? Ive found that sometimes I dont really tell people how bad I feel sometimes and in their heads they think Im fine when really I could do with a little help. Can you open up to them and say how you are feeling about your son? Im sure they will understand and give you more support. Ive got a 17 year old son and 14 year old daughter and understand where you are coming from as it seems never ending. I want to throw everything I can at this horrid cancer as I just dont want it back. Youve only got 3 more to go. I would keep going.
I really feel for you in your dilemma. I think the whole issue of quality v. quantity of life is such an important one and not often clearly addressed…the current fashion is to ‘take all the treatment’ I think when you are having side effects which are really intolerable to you (and yours sound horrible) sometimes it is necssary to step back and reconsider.
I’d say quiz your oncologist again about the statistical benefits of continuing chemotherapy…you may be right that in your case its a very tiny advantage and that for you may just not be worth it. Always going for the most tretament is not always the right decision for each of us.
I think you are a bit confused about ‘recurrence’ and ‘spread’. In most cases when cancer spreads it is metastaic spread to distant parts of the body. In fewer cases there is local or regional recurrence…and a recurrence in itselff usually increases the chances of metastatic spread. Some regional recurrences are not curable.
My own story is different from yours…I have one of those incurable regioanl recurrences (In my case tumours in my neck are now compromising my voice…I can’t speak properly). I have struggled psychologically through probably 30 cycles of chemotherapy in the last 5 years, each time wondering whether it was the right decision. Trouble is you never know till afterwards…much of my chemtherapy has been a waste of time, but two drugs (taxotere and vinorlibine) in my case have probably kept me weller than I would have done otherwise…so I now reckon maybe it was ‘worth it’. Now I have cancer symptoms (the voice, pain and a wonky eye) it is eaiser to do more pallaitive chmeotherpay than I found it when the whole thing was hypothetical. BUt I am not having the kind of side effects you are suffering and if I did, I’d stop…I think!
It may well be that stopping chemo for you now will not make any difference, whereas having herceptin will (remember herceptin doesn’t work for all her2+ cancers though)…or maybe 1 epi and 4 CMF would put you into pernement remission…maybe your cancer isn’t gong to come back anyway.
Talk some more with your oncologist about risk, think about your attitude to risk, yes think about now compared to the future…eventually you wlll know what is the right decsion for you…take it and try not to look back.
I don’t have childern but I have seen many students through GCSEs…parents can get in the way you know!
I so agree with Jane’s comments above re quality versus quantity of life. I decided against chemo because onc said only a 2.4% chance of improvement and he totally supported my decision. I’ve seen so many people have very long lasting side effects with chemo, and it just isn’t true that once you stop it then the side effects go away. The damage to bones and joints can be permanent and the drugs given to counteract the arthritis equally can cause damage to the stomach lining with ulcers and gall bladder problems. Not to mention the “stripping” of the entire immune system! I’m not saying this to panic you, but just to say it needs very careful thought and it isn’t always right to take every thing that’s out there or to have every treatment on the market. I suppose some people feel that if they “throw the kitchen sink” at it then they can’t be to blame if it goes wrong in the future. Personally I shall just take responsibility for my own decision.
I think that you need to talk to your doctor about your odds and in particular check that your advantage would probably be small. The doctor who invented herceptin believes that anthracycline chemos cut recurrences in those her2 positive patients with the topoIIa trait, which is about one-third of the group. However, if your risk of recurrence is already pretty low a third is not going to be that much and since you have already had three rounds. Also, ask what the added benefit of the CMF would be, since my understanding is that it is not believed to be as effective as FEC, although sometimes switching chemos can help to outmanouevre cancers. Also, you should double check whether you really are mainly at risk of local recurrence rather than distant recurrence.
I have really mixed feelings about anthracyclines because they can sometimes cause heart damage that means that people can’t take herceptin, although this is more of a problem in older patients. I wish that there were some better alternatives, but at present the regimes that don’t use anthracyclines aren’t being used here (because they were trialled against older US treatments not used here). They are nasty in their own way, but more heart-friendly at least.