I’m 56 and recently had a grade two estrogen positive tumour removed. My path staging was stage one. I had 2mm metastases in my sentinel node so agreed to a total axillary node removal. All the rest of my lymph nodes were clear.
I’m happy to have the radiotherapy and tamoxifen but just can’t get my head around chemo and the risk to heart muscle and the risk of getting leukemia. It is these long term risks I’m bothered about. I was also told that for women with my particular diagnosis only 4% would benfit from chemo.
The % stated is based on statistics against individual presentations. Within this each of us is entirely individual and so is our risk and response.
Tamaxofen can be very successful at treating and holding cancers at bay. 4% less chance of a secondry and increased chance at life? You have to weigh up the pros and cons and make a decision that’s right for you. My pal was in a similar position to you and had chemo with the benefit being at 7% and that decision was right for her. She has no regrets.
Hope you reach a decision you are happy with it. Its a tough call to make. I wish you well, Lea x
Difficult decision. Not my situation as I had 3cm aggressive, although no spread at all, and was told I had less than 50% survival without chemo. Not sure now that I’ve read other people’s diagnosis that I wasn’t being fed a bit of a scare story, but as soon as I knew it was cancer I knew I would push for chemo and the hardest hitting regime I could get. That’s my decision though. I’m on Round 6 of 8 chemo’s at the moment (E-CMF), and although it’s not pleasant, it’s do-able, then I get 6 weeks rad, then the tam for 5 years.
If I had a small percentage to make a decision on, I would be considering my overall health and fitness at the time of starting. The stronger and healthier you are the less risk in the long term I would suppose. I feel for me at 45 and pretty healthy (no indication of heart, lung or other organ problems, vegetarian if that makes a difference, and fit in an ordinary sense) I can take the hammering. And I’m willing to take the long term risks on the assumption that a long term risk is going to be a long way in the future any way. I’d rather blast it to oblivion now, than get a recurrence and wonder…
Try and eliminate fear of chemo from your thinking [not that you necessarily have that :)] then listen to what your gut says. Mine said with no doubt at all that chemo was what I had to do.
I was diagnosed at the age of 50 - stage 2, wasn’t told the grade and no lymph involvement. I had to decide if I wanted chemo or not. I think my suggested improved percentage was about the same as yours. In the end I decided to go for it (my husband wasn’t so keen because of the side effects).
I was actually one of the unlucky ones and had a really bad time on chemo - apart from anything else I was neutropenic twice and also had a pulmonary embolism, which could have killed me. The one good thing was that, as a result of having had the pulmonary embolism, I was put on arimidex rather than tamoxifen and I think that this has a slightly better outcome. I am still taking the arimidex and, although I had some side effects at first, these seem to have faded and really don’t bother me now.
The pulmonary embolism still affects my life to some extent - having had one I am now more likely to have another and this affects my travel insurance (and my confidence about flying).
I often wonder, knowing what I do now, whether I would make the same decision again and, surprisingly, I think I would for the peace of mind it gives me, thinking that I did everything possible to get rid of the cancer. Another woman I know of who was diagnosed at the same time as me made the opposite decision and turned down the chemo. It is such a personal decision and only you can make it. You need to have as much information as you can about possible side effects and the chances of these so you can make a really informed choice.
It is a horrible decision to have to make - I always wished someone had just told me what they were going to do.
I hope that everything goes as well as possible for you, whatever you decide.
I was 64 at dx last year with a 7mm tumour & no node involvement & was told that chemo would make a 2.4% difference. I decided not to have it and am happy with that - I did have the lumpectomy and 5 weeks of rads. I just felt at my age any advantages of chemo would be wiped out by all the side effects - I have a friend who has permanent side effects to her immune system which will never go away. But I don’t want to give you horror stories, just wanted to say that there are some of us out there who did say no. (My onc was happy with my decision.) You must do whatever your “gut instinct” tells you!
Hi,
Just to place my comments, I am very pro chemo and take the line hit it with everything you have got and then there are no regrets. However, there are a few things for you to consider. Firstly your age is a plus, being post menopausal I assume and every decade apparently improves your chances. This makes your decision very different from younger people (sorry not meant rudely). Second point is do you know how hormone receptive you are? If you have 8 out of 8 then hormones are going to be really good for you compared to if you are just weakly positive. The final point is that your Bc had escaped from the breast and spread. That is the one that would nudge me personally towards chemo. Some ladies here have been very unlucky with side effects but most of us chug along and do not fortunately have the more serious after effects. Try asking your onc what he/she would do if you were their wife/daughter.Do you have a reason to worry about your heart? It would be tested but not all chemos bother the heart. It might be 18 weeks of chemo treatment, ask what it would be if you said yes, to make an informed choice.
As I say I am pro chemo and had 12 doses and would make the same decision again. Tons and tons of luck with a decision that is right for you and everyone on here will still support you no matter what you choose. Glad no-one asked me to decide
Lily x
Personally I think chemo gets a bad press but then I didn’t have a rough time on it particularly although I experienced one irritating side effect that won’t go away - peripheral neuropathy.
If I’d had a choice, knowing what I know now, I would have said a BIG NO to radiotherapy. Ladies think it’s walk in the park compared to chemo because it rarely makes you sick, takes a shorter time, no IVs and each day you are in there for only minutes but they are so wrong in the sense that RT is “the gift that never stops giving” - it leaves you permanently damaged, in some cases very damaged and in extreme cases the damage is still “proceeding” after 5 years or more. It doesn’t stop as soon as you leave your last RT appointment. It is a hideous, humiliating (it was at Oxford anyway), highly damaging treatment and the damage just can NOT be undone to any extent at all.
At the time of rads (14 months ago) I thought it was easy. No skin reation, no tiredness, nothing. BUT a year later I am suffering with rib and muscle pains/damage as well as stabbing pains. Dread to think what long term damage has been done to lungs!!
This is such a personal thing because everyone’s experience is SO different. For me radiotherapy was “a walk in the park” - I suffered no side effects at all & carried on working & drove myself every day for 5 weeks. The staff at Maidstone were wonderful, the facilties were state of the art & I was made to feel very comfortable. I think you have to go into these things in a very positive way & co-operate with the staff. They told me at Maidstone that some patients are very angry, & difficult to work with, & what a relief it was to them to have patients who realised they were just doing their job & really trying to help & it wasn’t their fault that the patients had cancer! My surgeon told me that the stabbing pains come from the surgery and not from having rads.
My surgeon told me that I have sustained a lot of damage from RT (although I do think this was one of his excuses for doing a very poor LD flop - other surgeons confirmed this!) and my oncologist confirmed this - it is not rare by any means.
Logistically it WAS easy, 100 miles round trip every day for 25 days, kind staff, no changing facilities, slight itching but that’s all, however, once it was done the damaged started and continued for several weeks and is of course irreversible and if you go on to have so-called reconstruction then it may well have an effect on the outcome of that i.e. working with a lot of hard dead tissue is not something breast surgeons are good at although Plastic Surgeons are more, let’s say, resourceful.
Hi I was 39 at DX Grade 2 1.8mm er/pr + her 2 negative had no node involment but was given a similar option. When the onc showed me the % there was only 0.8% difference between radio therapy, tamoxifen and zoladex(to shut off my ovaries,currently waiting for oopherectomy as 40 and still pre memopausal) and radiotherapy, tamoxifen and chemotherapy. I took the first option. I suppose only time will tell if I have made the right decision but i am completely happy with the choice. I was 1 year clear in Feb and all seems to be ok. I have been scanned, checked and double checked every 3 months.
Good luck with everything.
S x
Hi, I was 44 at diagnosis,Grade 2 15mm, 100% ER and PR positive, I wasn’t told to have chemo but got offered it if I wanted it…hmmmmm I was given 3% increase in survival over 10 yrs,however with surgery rads and tamoxifen I was already 93%.
For my stats the risks and small percentage increase outweighed the benefits, it’s a very individual thing.People have chemo and in some cases their cancer returns, however, you have got to live with your decision if you don’t have chemo and your cancer returns can you live with that …sorry to be so blunt but that was the questions I asked myself. I’m happy with my choice and am having to trust my onc that for me even being pre menopausal,I only am on tamoxifen,she doesn’t think zoladex or oopherectomy are the best options. Just wish the oncs would agree on a standard treatment but it doesn’t seem to be the case. Good luck with whatever choice you make.
Hi
I too was 44 at time of diagnosis, grade2 3cm er and pr +ve with no node involvement. I was told that chemo gave me about an extra 8% chance and for me it took no time to make a decision. I could never forgive myself for not throwing eveything at it and ending up with spread in a few years time. I’m curently on cycle 7 of e-cmf and have fortunately had very few problems. I wouldn’t hesitate to make the same decision again. Lady who was diagnosed at the same time as me but was grade 1 wasn’t offered chemo and she sometimes wishes she had been for the extra peace of mind. It is all very personal but you just have to know that you can live with your own decision. Good luck with whatever you choose.
Nicky x
I understand your dilemma. I was diagnosed with bc last August, aged 35 and was told I needed a mastectomy within the week. I had auxillary clearance also. Results came back as grade 2, stage 1. The oncologist offered me the choice of 7 months of chemo, rads, tamoxifen or just the rads and tamoxifen. My husband and I came to the decision together that we would not have the chemo. We have 2 children aged 7 and 10 and as much as I wanted to throw everything at it that i could, we decided that for the statistcal percentage that it would stop cancer returning that it was not the road we were going to go down. However if any of my lymph nodes had been infected then I almost undoubtadley would have chosen the chemo.
If you have a partner then make the decision together, it has to be right for you. Wishing you lots of luck and love Heidi xx
Hi.I’m 42 had op to remove cancerous lump& surunding tissue and first lymph node,(i dont like using technical terminology, it seems inmpersonal).
Results shows that all the cancer was removed and no signe of spreading to lymph node. I am relived that i dont have cancer at the moment but dreading the thought that thay want to poison my body with chemotherapy and radiotherapy so that there is a greater chance of it not coming back.
I know i should thing myself lucky that i am not terminal but i’m worried about the side affects, My bigest fear is that i will be more susceptible to stuff like swine flu if I have chemo.My Mother(67) had cancer of the overy and after surgary and one dose of chemo she caught pneumonia and died.I know its not the same but im still scard, Will i regret it if I dare not to have it?
It hepls me to wright these things down even if no one reads them, otherwise they gust keep going round in my head.
the breast cancer nurse is coming later to discus my next corse of acion!
wish me luck and the curage to make the right dicision.
Adjuvant Online rounds tumour size up to the next cm - but tumours don’t jump in size so why should prognosis?
I have decided against chemo finally, after doing weeks of research and thinking, despite onc. recommendations. It’s a very personal choice and depends on so many factors aside from your cancer, as well as your grade/stage. Your onc and BCN nurses will (or should) support you in whatever choice you make.
Good luck - take your time and follow your gut instinct x
Thanks for the link to the calculator, I found that quite reassuring actually. It doesn’t seem to factor in radiotherapy though ?? or was I missing something ?!
It is funny how treatment options seem to differ from one hospital/area to another. I am 43, 1.1cm tumour, no nodes involved, ER positive, no vascular invasion, grade 2. I have been offered Tamoxifen (now on day 11 !!) and radiotherapy (planning meeting next week). Despite me questionning it 3 times with 3 different people (onc, GP and BCN), they insist chemo is not required.
I thought it might have something to do with my high levels of anxiety at time of diagnosis and surgery (ie. they thought I was too much of a wimp to cope with it !!).I asked them this outright and they said it had nothing to do with it: even ladies with extreme phobias of hospital/needles/chemo etc. or those with learning difficulties who don’t really understand, are advised to have chemo if they need it and given relevant support.
Me having a “choice” didn’t enter in to it at all. In a way I am glad about that, as I would have found it extremely difficult just like you tete a tete.
I wonder what they’d do if I went back and demanded it…! ( not that I intend to )
Wishing everyone good luck with making this choice
Both Adjuvant online and this calculator assume you have had either a mastectomy or lumpectomy+radiotherapy (both options give the same protection apparently).
You always have a choice, but they won’t recommend you chemo if the benefit is really small for your particular cancer - as the side-effects would outweigh it.
