Hi All
I am new to the forum (although I’ve read it quite a bit). I would like to hear views and experiences about being offered chemo as an optional extra. I have had WLE for 2cm grade 2 tumour with clear margins and nodes. I was’nt expecting chemo for this result (although , of course, I was prepared for worse news). When the surgeon suggested that onc may offer chemo for 2% increase in 10-year survival rate, I was completely floored. By the time I saw onc reg, I was nervous wreck and did’nt know what to do. After 2 meetings, decided not to go ahead. It seemed too drastic and horrible for tiny possible benefit. All I really wanted was someone to tell me what to do, but nobody would. I went straight to rads, which is now finished. At Dr 's clinic part way through rads, I saw the onc consultant for first time and said I had no peace of mind over the decision I had made and was very depressed. He was very kind and understanding and suggested I could still go ahead with chemo (I thought it was too late). Now I am booked for chemo to start next week, and feel much more settled about it than before. I am no longer depressed because I am finally confident that this is the right thing to do for me. I am looking at it as just an unpleasant job to get done, rather than a dreadful nightmare.
Maybe some folk will wonder what I am whinging about, when I am lucky not to have a worse cancer. Others would perhaps opt for chemo without hesitation, as common sense probably says attack cancer with every possible weapon as soon as possible for the best chance of success. However, I think this subject needs to be aired. When I visited my GP recently to get dressings for skin soreness after rads, she said “I’ve read your notes and I’m shocked by the position you’ve been put in regarding chemo. I did’nt know it would be offered for such a small percentage. Do you need counselling?” If that is how a GP sees it, then maybe I have’nt been so naive and ignorant after all. I always thought you either needed chemo and your Dr would recommend it, or you did’nt. Most people I’ve spoken to thought the same.
I am not criticising any individual here. I have had marvellous care and am impressed by the speed of results and treatments. Neither am I wanting a return to the bad old days of paternalistic doctors issuing orders to unquestioning patients. I am all for informed choice. The problem is the system. If people have to be put in the position of making a very difficult and finely balanced decision, there has to be a better way of going about this. I do’nt know the answer. Maybe we should all be warned at the beginning of the process that you could be offered a treatment with no guidance over whether to have it or not. Maybe professionals think this would be too much of a burden to put on someone at the outset of treatment, when there is so much to take in. I personally think I may have coped better if I was’nt so shocked. Maybe some sort of decision-aiding literature could be offered, eg writing down all the pros and cons, however irrelevant they may seem. Maybe this “optional” issue with chemo should appear somewhere in BCC’s general literature.
Maybe someone out there in the same position will be glad they are not the only one to feel so confused. I never want to feel so isolated again.
Answers on a postcard please… I hope this gets the ball rolling.
Tabby
P.S. Is chemo worse than having a baby?
Hello Tabitha-Twitchett
Welcome to the forums, this must be a very difficult time for you but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.
In the meantime maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information and you may be able to discuss the issues around the options of chemotherapy. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
Best wishes
June, moderator
This thorny issue has been discussed before on here:
[Search Results | Breast Cancer Now
](Search Results | Breast Cancer Now)
I was put in the same awful position: Surgeon said “Your cancer is gone - clear margins. No lymph involvement. Just waiting for the results of one more test. Appointment with onc in 2 weeks time to discuss treatment”
I automatically assumed that that would just be planning and booking rads, so I was devastated when chemo was suggested. Again, it was MY decision. Horrid horrid week of constant debate with myself - and anyone who would listen!
Accoprding to my BCN, this doesn’t happen very often, and she was horrified that I’d been asked to make the choice myself. Usually, you’re either told you’re having it or it’s not mentioned at all. As I was borderline for obvious chemo benefit (2.8cm, Grade 3 both suggesting chemo, but no lymph, clear margins and hormone +ve suggesting not necessary), the onc was probably covering herself by offering it to me. That way I couldn’t sue because it did more harm than good, OR because I didn’t have it and I had a recurrance. My decision - let’s them ‘off the hook’!
When I finally declined it - didn’t think 5% improvement on 80% survival was worth putting my body through systematic poisoning, with no guarantee I’d even be in that 5% - the phrase “Yes it would Probably be overkill” was used BY MY ONC!! The BCN (chemo) actually said then that many ladies suffer long-term SEs from chemo! None of that was mentioned before I made the decision! (Aparently, in this area, any statistical benefit below 4% and chemo’s not even mentioned!)
Having said that, it seems you were very unhappy about NOT having chemo, so maybe having it is the right thing for you? I felt elated when I declined it, which made me realise I’d made the right decision FOR ME. Quality not quantity has always been my motto for life! I’d be more annoyed with myself for having 4 months of poisoning and unable to work and it came back, than having rads, hormone therapies and getting on with enjoying life and it coming back.
I hope you make the decision you are comfortable with, and that, whatever you decide, you manage to keep this vile disease at bay! x
Hi
I too had this awful decision to make,2cm grade 3 tumour,no lymph nodes involved,and aged 49 i too was given a choice.I decided to go ahead with chemo and had one session out of 6,was very ill and decided not to go ahead with the rest of chemo when nobody could say it was of any reasonable benefit.When I broached the subject of stopping chemo with my bc nurse she said “i was suprised when you went ahead with it anyway and you will get more benefit from having radiotherapy” so had 5 wks of rads then on tamoxifen.It is a very personal,very difficult decision and because it was really rough for me doesnt mean it will be for you.Best of luck with your decision,personally I think the so called experts should decide.
Best wishes to all,
Di.x
Hi Tabitha Twitchett (love the name, my daughter’s called Tabitha!)
I too was told I was borderline for chemo and it was my decision to make - 19mm tumour, grade 2, ER+ node negative. I was originally told i’d only needs rads but my BCN said I might be offered chemo and once i’d got over the shock and fear i was ready to jump in with both feet, my benefit to having chemo was only 2%. Whatever decision you make has to be right for you and no one will judge you for it, it sounds like you’re happy now with the one you’ve made.
As for is chemo worse than having a baby, it’s like comparing apples and oranges, they’re completely different. I coped very well with chemo FEC x 6, don’t get me wrong, it was a total ball ache and every 3 weeks I dreaded the side effects but it was certainly doable, I worked most of the way through mine, although i’d had enough by the end and went off work sick before I started rads, I just needed a rest. Everyone is terrified of chemo, for me the fear was far worse than the reality.
Take care
Lydia x
OMG I have just written a really long response to this very interesting thread and the kitten has switched my computer off!
Arggggggghhhhhhhh!
In a nut shell, I was in a similar boat small ca, 1.2 cms, gd 2, bilateral mastectomy clear margins, no lymph involvement etc and I thought they would say no chemo but in fact they didnt and I was releaved. I knew without it I would be a bag of nerves and always expressed a desire to be treated proactively from day one which I know along with my age and strong fam hist influenced the oncs decision. To me any benefit was enough and I never directly asked percentage wise. I kind of find that when it affects me directly percentages no longer matter. Im 41 so statistically wasnt likely to be br ca, calcifications were statistically going to be nothing etc etc. Had I expressed a desire to not have chemo or been uncertain I think they would have done that onco dx thing on me is that something you could consider?
Your question re having babies has made me smile as I asked my sister the very same thing then I asked her if you could combine that with the hangover from hell how did it compare etc. Funny that chascat thinks they are apples and oranges Id say more satsumas and oranges 
ie some distinct similarities to early pregnany, nausea, food fussyness vs food craving, everything smelling strong, especially my fridge and dishwasher!, constipation, being tired etc etc Ive only had 2 chemos so far and next is Mon so no expert on the subject! Had more pregnancies that chemos in fact!
I think if Im being honest if I was the nurse / dr treating me I would have thought she’s going over the top and fact is I poss have??? But I wanted to do anyhting and everything I poss could and was just terrified, I mostly still am, my desire to see my children grow up has governed everything I do, so a small percentage benefit would have been enough for me to also not be thinking in the future should it come back I should have done this or that!
I thought more people wpuld express surprise at my desire to have the surgery I had but I would never have regretted it I dont think (again I knew exactly what I wanted) which incidentally was backed up when I got the path report back and found that I had a large area of high grade pre cancer!
Tabitha I hope this helps but I know every lady has their own views on this subject neither which are right or wrong of course
Good lcuk with making your mind up and the decision you make and I know exactly what you mean. I find the whole cancer thing pretty lonely and isolating despite having lots of support
mandy x
Sorry that wasnt really a nut shell was it?
Hi, I too was in the same position as you. Its a horrible decision to have to make.
I’m 45 and had a 2.1cm, grade 2, er+ve, HER2-ve cancer. Clear nodes and no vascular invasion.
I was given the option of chemo, but was also offered a trial that was being run by my NHS trust - oncotype dx. It’s used in the States to decide who will benefit from chemo, but its only proven for use in er+ve, early stage cancer.
My oncologist was great. He recommended chemo for me but I think he was guided by my thoughts on it. Effectively he took the decision away from me, but by listening very carefully to my views etc. My oncotype dx result came back borderline too, so could’ve been used to justify my decision whatever it was.
i agree with Mandy that there are similarities between pregnancy and chemo. I’m having chemo number 3 next week too. I did laugh when I read about the heightened sense of smell… In fact I just read it to my hubbie as he thinks I’m going bonkers because I can’t use anything that’s been in the dishwasher for the first week after each treatment because of the awful smell!!!
Chemo isn’t nice, I reacted really badly after my first FEC and got taken off of it as a result… even so, I’m not regretting my decision. It is totally doable.
As you’ve probably realised, I think you will know when you’ve made the right decision for YOU.
xxxx
Hi Tabitha
After surgery for my 11mm grade 2 ductal cancer, with 1 affected node, my oncologist tried at first to persuade me to have chemo, despite it only offering me 3% extra survival rate on top of 90% over 10 years. After a horrible couple of weeks of indecision, I asked for a Ki-67 test to be carried out on the tumour to detect the proliferation rate. Mine came out low at 8, so I declined chemo, and it was then I was offered Zoladex injections (to suppress my ovaries) alongside the Tamoxifen.
The Ki-67 test isn’t routinely offered, but I’d heard about it on this board and my oncologist agreed to carry it out on the NHS. It is, however, part of the range of tests that are included in the Onco-DX test, to check whether chemotherapy is necessary for breast cancer treatment, but as far as I am aware, Onco-Dx isn’t available on the NHS and costs about £2,000 privately.
Also, Zolodex injections don’t seem to be offered as alternative treatment, unless women turn down chemo, but apparently Zolodex and Tamoxifen (or an AI) are considered to be as effective as the older types of chemo.
Recently, my oncologist told me that the treatment I am having is appropriate for the “low risk” cancer that I’d had.
There are no guarantees with this horrible disease, but I was comfortable in my mind that I’d carefully considered the treatment that was best for me, yet I am aware that the cancer may still come back.
Good luck to you in your decision, and I hope you’ve beaten it once and for all.
Thanks for all the replies. I would still like to hear some views about how folk could be helped to cope with the decision-making process. Although this has been discussed before, I could not find it at the time I posted.
It was interesting to hear from Buffycat about treatments I have never even heard of. I guess I should really have asked this question 2 months ago, but then I was too upset to take the plunge.
There seem to be a lot of cat people on this website. Is n’t it a good thing we are n’t really cats, as they have SIX breasts.
I too have been put into the same situation as you. After a long wait for onc appt i got no help in making my decision. I have decided to have the chemo as i am relatively young and have 3 children, i also read alot about others with my results getting secondaries and didn’t want to live the next few years wondering. I too start next week and an petrified. I also feel worse for the fact that i may be putting myself through this unnecessarily. At least if onc said i definately need it as it had spread i would be saying bring it on. Having said that i know i am lucky that it hasnt spread. Hopefully we can get through this together. Good luck x
Truth is we’re dealing with incomplete knowledge - just like the medical professionals. Being a medical professional doesn’t mean you have some amazing powers of being able to tell whether a person will be in the 2 or whatever percent or not. It is a hard decision to make - there’s no getting away from it. But would you really want to be not given the choice, given that it’s your life that is being gambled with? Would you really want a medical professional to make the gamble for you?
Because the survival rates for early stage breast cancer are so high, the benefits of chemo are quite low. There is no ideal answer because when you are having ‘insurance policy’ adjuvant chemo you NEVER know for sure whether you need it or not. You only know the probabilities. And individuals aren’t probabilities.
Hi Tabitha
Yes, you’re right, I wouldn’t want to be a cat with their 6 breasts although I love cats dearly!
Like you, I hadn’t heard of the Ki-67 test, Onco Dx test, or Zoladex until I came on to this board. My Oncologist certainly didn’t offer me any of those treatments until I asked about the Ki-67 test. He just wanted to go down the chemo route. Only when it was seen that my tumour had a low proliferation rate he agreed that chemo wouldn’t have been of much benefit to me, so I really don’t understand why the Ki-67 test at least isn’t offered routinely. Also, Zoladex tends not to be offered as an alternative treatment option unless a woman turns down chemo, yet my Oncologist now says I am having the most appropriate treatment for my breast cancer!
Luvvie66 - I’m glad you got the offer of the OncoDx on the NHS, even though it was borderline. Maybe other NHS trusts will start offering it.
Mammamia33 - you can only do what you feel is right for you. There a lots of chemo threads on the board, and there is great advice on how to cope with it. When I go for my hospital check-ups, I am always warmed by the real friendships that have sprung up between the chemo ladies, and often their partners as well (and they don’t mind talking to a non-chemo person like me)!
Keyfeatures - we are supposed to trust in the professionals’ knowledge, but I have found that they don’t always give you the complete picture or the different tests and treatment options. This is why I have found this board so valuable,with ladies willing to share their experiences and knowledge, for which I give great thanks.
All good wishes to you, ladies, whatever you have decided to do.
xxx
Ah! But cats have nine lives - so treatment options wouldn’t be such a horrible gamble??
Hi
I had similar dilemma. After WLE the surgeon said it was good news - clear margins and no nodes affected. Next step was rads and drugs. I asked re scans and chemo and he said they were not needed. Ready to move on to next stage of treatment and feeling settled.
Then - had appt with onc to set up rads and she said I was ‘borderline’ to benefit from chemo - it would improve my chances of survival by 3.5%. I said the surgeon did not recommend chemo and she said he was ‘only the surgeon’. I realise she is the expert though she said it was still my ‘choice’. I have cried a couple of times since diagnosis and this was one of them (after leaving onc’s office). It would have been better to have had it discussed at the post op appt and for them to have discussed it as a team. The onc said if I was her sister she would advise me to have it… I said OK but was really upset as I hadn’t been expecting it.
Then saw the surgeon again and he was still saying it was not really needed but it was my choice. He said he deals with the patient over a longer time period and sees the side effects of chemo. Apparently the onc would normally have been at the post op mtg to discuss treatment but she was away on holiday. Like some of you it was a dilemma which greatly added to the stress. Saw the onc again and asked lots of questions. I decided to have the chemo for some of the reasons already given - to think I had done everything I could to ensure I was here for my kids into the future. Once the seeds of doubt had been sown it was hard to ignore. It was not an easy decision though and it has affected my well being. I suffer from acid reflux which has been chronic since diagnosis and not helped by this situation. Whatever decision is made I think it is important to go with it as positively as possible - though ask me again at the end of my first chemo session which starts 27th Sept…
Part of me wondering though re the oncdx test mentioned above as I am stage 2, ER+…should this be the way forward ? I agree it is an issue which needs to be aired and (if it hasn’t already been) taken up by the healthcare professionals to lessen the stress and anxiety
x
Dragonbunny
(Where do we get these names? I wanted to be a meerkat, but it was n’t to be), thanks so much for your reply. I’m starting 27th too (tomorrow!!!) Good luck to you.
I believe there is definitely a need to think about reducing the stress of these finely balanced decisions, as life is about quality, not just quantity.
Tabitha & Dragonbunny, thinking of you both tomorrow, the sooner you start, sooner you finish and get on with enjoying your lives x
Hi All,
I have been diagnosed with a 15mm invasive ductual carcinoma and with 5cm of dcis, grade 3,stage 1 no lymph node involvement,er and pr postive. I therefore need a mastectomy and have been offered reconstruction this i have accepted and have decided silicone implant which has been offered with strattice matrix mainly i think because i have a active job. This has not been done yet, I am 48 this leads onto my question were this thread suits me perfectly i have been given the given the option of optional chemo this will give me a 2% increase. This has caused me great distress in coming to terms with making this decision, i have found it very hard to make and it would of been great if i didn’t of have to make it, the meeting with the oncologist was not an informed one and i have struggled with this. I have decided to take the chemo, have any of you lovely ladys who have been in a simular position to this who have taken the chemo ever regretted in taking it ie due to health reasons this may of caused. Any replies would be welcome.