I am 46 years old and have had WLE of invasive Br Ca with diameter 1.1cm grade 1 oestrogen receptor positive nodes negative so am classified as low risk. I have had the followup appointment with the oncologist who has given me the choice of either chemo, radiotherapy and tamoxifen for 5 years or no chemo, radiotherapy, Zoladex for 3 years with tamoxifen for 5 years. Apparantly the chemo would only increase the survival rate statistically by 1.5% so it is debatable if it is worth doing for such a small increase but she has left it to me to make the decision. She thought that the chemo would most likely put me into a menopause the same as the Zoladex. I am unsure what to do and am not even sure what the chemo would likely be as there was not enough time to discuss this. Has anybody had the same discision to make and what is the norm for low risk 46ish year olds to do to do. Any advice would be helpful as this is doing my head in.
hi
There was another member who was given the CHOICE to have chemo, rather than the RECOMMENDATION (I was strongly recommended as I am only 34) but I think it is a bit poor to leave patients to make their own decision. And I think it is poor that they didn’t tell you which Chemo you would be getting. Bloody NHS. I think you should ask for more info, including what type of chemo you’d be on if you opted for it, and what are the potential side effects of the things you’d be given if you opted NOT to have chemo. Then you can at least make an informed decision about which side effects you would rather endure. I am a bit pissed off about having to go through chemo but understand it is for the bigger picture and also I sort of feel reassured that whilst I feel a bit crappy and am getting bored of having no hair, I am being “cleaned up” My cancer was 2.4cm diameter, grade 3, oestrogen receptor negative, nodes negative. It was based on my age and grade of my tumour that they recommended chemo. Oh and they never told me I would need chemo until I came back to the hospital to have my stitches out and thought that’d be the end of it.
Sorry that wasn’t much help but I really think you need to find out a bit more at the hospital and don’t let them tell you they don’t have time xxx
Thanks for your comments. Yes I do need to get back to the hospital for another appointment. This leaving the choice up to the patient is all about the new idea of empowering the patient, all very well but they do need to spend more time explaining the options available. Its all the more annoying as I have been working in the hospital for the last 23 years and feel they have had the best of me !
Hi milsom
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Best wishes
Ann
Hi Milsom
I am 40 and in Jan I had WLE 16mm grade 1 er+ no lymph nodes affected - so like yu I was classed as low risk. I had the oddity of 1 intermammory node containing cancer but after much discussion the onc team classed me as node negative. I was advised that chemo would increase by chances by 1% and they (the onc team) had decided that the pros of chemo were well outwrighed by the cons of it so they would not be offering chemo - I had 29 rads (25 plus 4 boosters) and am on tamoxifen for 5 years, possibly discuss removal of ovaries at some point in the future.
If I had pushed for chemo then they may have reconsidered - but to be honest I was slightly unnerved about not getting chemo, mainly due to the intermammory gland thing - but they assured me that the rads and tamoxifen would be sufficient to deal with any stary cells.
Good luck in making your decision and contact your BCNurse and/or oncologist for more information if you need it.
Hi
I had the same thing but with radiotherapy - I had the option. I think being given an option should be seen as a positive sign in terms that they don’t feel you are high at risk. However, I agree that without all the facts how on earth do you make an informed choice? I think its useful to ask yourself how you would feel if you did decline the chemo and then relapsed or conversley, if you took the chemo and then had a problem with the effects of the chemo? Its a really tough call and I guess it all boils down to the effects of the chemo both early and late on versus the chance of the cancer returning as a more aggressive version? Personally, I chose to have radiotherapy because I felt I could not forgive myself if my cancer returned and I hadnt done everything possible. However, radiotherapy and chemo are different in their long term effects
cathy are you there please as want to talk to you about somethng let me know and I will pm you x
Thanks Lilacblushes,
This is what I want to read someone in the same boat as me. no way do I want chemo but would go for it if needed. Have you been offered Zoladex for ovarian suppression and how have you been on the Tamoxifen ? BC nurse has been on phone this morning and has spocken to oncologist who is now saying they think that best to go for hormone treatment without chemo so may be getting somewhere with the decision now. I am impressed at how fast you have been treated.
The tamoxifen has given me a few side effects - the usual hot flushes (which at the start were actually quite handy cos it was winter and I don’t have double glazing), I get tired -but for 6 weeks I was harking back and forth to Glasgow every day - any where between 45-90 mins journey depending on traffic so not sure if it was the tam, the rads or the travelling. The worst side effect for me was the fact that when I get a period (which is spotting) I get a very inflammed virgina, and I mean VERY itchy and red and just don’t ask for details cos u just don’t want to go there - but details (not graphic details) can be found in a previous thread named ‘delicate side effect’ in the hormone therapy section… and for anyone who was previously aware, this months update, it happened again!!
I’m fairly impressed with the speed of my treatment etc - I initially found my lump on 5th Jan, had surgery on 25th Jan and finished rads on 29th April. I was expecting to be ill (which I’ve not been at all), be off work for months on end (had 2 weeks post-op then a further week a little while later for intense physio) and be battling this disease for months and months and months… obviously I still have issues to deal with but the post-rads stuff is just a matter of time for it all to heal itself. I consider myself ‘on parole’ and just have to check in with different departments from time to time … I’ve been told I will be seen monthly to begin with and then after a time (if I behave myself) they will change this to 3 monthly etc …
I know some ppl who are having a much harder fight against BC and reading this may well want to come poke my eyes out … and I don’t blame them - but my story might help ladies like yourself who are starting on the same course of treatments that I had… I’m not saying BC was easy for me, far from it… but I was able carried on with normal life and just slotted BC into the schedule. I hope you and many others have as trouble free a journey as I’ve had so far.
I don’t think that anyone resents anyone on here, if some are finding it easier than others.
I was gonna refuse chemo and radiotherapy when the BC nurse first hinted that I might be recommended for it, until I read up on it. I sell insurances based on a “what if” or “just in case” scenario so I decided 6 months of therapies was my insurance for my future. I bloody hope they will be a one-off though, not to need repeating in the future. But the weeks are passing very quickly