I have just reached my 40th birthday and have been diagnosed with grade 3 stage 1 nodes clear BC i have had a lumpectomy 4 weeks ago, i was told i would have to have radiotherapy and 5 years of hormone tablets, but when i went to see my oncologist he said he would recommend i have 6 months of chemo 
im so confused over what to do?
Hi Amazon,
How doesnât this damned disease cause us problems? Weâd hope that the only thing to deal with would be the diagnosis in the first place, but the number of choices we have to make, if we are honest in quite a speedy fashion, without much prior knowledge or understanding. Some one once said to me that you donât want chemo. I pointed out that I didnât particulary want BC either! However, because the benefit I would get from Chemo was substantial, I had no qualms about going for it. BUT every case of BC is different, and each treatment plan has to be put together independently.
Did your Onc go through the additional benefit of adding chemo to your therapy? They do not recommend chemo unless theyâre sure of a reasonable benefit, but if the benefit is small they may leave the decision to patient.
Do you feel you have sufficient information to make a decision? If not, I would ask for another consultation and ask searching questions about benefit and consequences of both having the treatment and not having the treatment. No one else can make the decision for you, but donât forget that you are young to have breast cancer (it still makes me smile when every consultant I meet tells me at 43 that I am young to get Breast Cancer) and should expect to have an long life ahead. That is what the treatment will try to do, keep your life span as close to the original as possible. The lumpectomy and Rads is to remove the original cancer, the chemotherapy and hormone tablets are a belts and braces, mop up the strays.
I have been diagnosed with grade 2 IDC, 3/26 nodes and had a mastectomy, and will have chemo and Tamoxifen, but no rads.
Good luck. Just take the time to make a decision you are comfortable with. Feel free to pm me if you have specific questions.
Best wishes, MM xx
Hi
I was diagnosed with IDC grade III, 2cm, 0/2 nodes, ER+, HER2- on 28 Dec 12. I had WLE & SNB on 17 jan (my 44th birthday lol). My onc was on the fence whether I should have chemo or not, she left the decision entirely to me. I myself was unsure whether to put myself through it, & it was my mum who advised me to go for it. Her though was that I was too young not to have it, better to go through one rough year to add many to my life. I was terrified of chemo (you hear all these horror stories), but I was more terrified of cancer returning, so decided to go for it. I am having 6 x FEC, & am due to start round 2 on Wed. While Iâve had good days, & bad days throughout my first FEC, it is definitely manageable. I will also have 6 weeks rads (my tumour was actually on my chest wall above my breast, so 5 weeks to the breast & 1 week to chest) & tamoxifen.
No one can make this decision for you, make the right choice for yourself because its your life, & whatever you choose youâll have to live with.
All the best whatever you decide & feel free to PM me any time. I am part of the February Valentines forum, who all started chemo in Feb, they are a fab bunch of girls, very supportive, so feel free to pop in there anytime.
Dyane
Hi Amazon,
I didnât have any choice on chemo when diagnosed with IBC I was having it or I would be dead within a very short period of time - but had to face a similar decision on having further chemo later in my treatment plan. It was difficult because I was expecting to finish treatment and wammo there we are more chemo.
For me the decision was easy - you are only 40, I am 48, I have a family and I donât want to take any risks and to ever face the time when they say to me there is no more treatment they can offer me and my cancer has spread.
The thought of chemo is scary but it truth for most of us its hard but do-able. I agree totally with Dyane one tough year of treatment! I was diagnosed Feb 12 and am now finally out of treatment. My hair is back, I feel great, my strength is coming back and I have no regrets for pushing for the maximum treatment, I would not let them turn my chemo down, had radiotherapy recall throughout my second chemo cycle but I would not change anything.
I chose life. xx Good luck to you.
Hi Amazon - just to let you know I have started a âhaving chemo in Aprilâ thread if it turns out that you are having chemo. A few ladies have already replied who, like me, think their chemo will start in April some time. It will be nice to see you on there if it turns out chemo is the best option for you.
take care xx
Hi Amazon,
I went along to see my onc thinking that I was to have no chemo, possible rads and definitely hormone therapy. He said def rads and hormone therapy and in his opinion he would advise me to have chemo, though I was on his cut off point. He set a date for my first chemo but gave me a week to think about it. I felt it was a no brainer, I now feel that if it should return I did everything possible to prevent it. Chemo wasnât pleasant but it was doable and join the April thread if you do go ahead. You will get loads of support and be of support to others.
Good luck and whatever decision you make it will be the right one for you,
Gaynor xx
Hi Amazon,
Did your oncologist say why he was recommending chemo? Did he show you the statistics for your personal diagnosis on survival rates without treatment and then with treatment? He must have had a good reason to recommend chemo, and if you donât know why, then I advise you to ask for another consultation and make sure he explains it to you. Chemo may mean putting your life on hold for 18 weeks, but at the end of the day you need to know you have done all you can to beat this evil disease.
I am grade 3 IDC with completely clear nodes and no vascular invasion, hormone negative but HER2 positive. The difference between chemo and no chemo to my statistical survival chances was significant. It is a no-brainer for me. I am 65 and I intend to live another 30 years, and if that means 18 weeks of hell, then I will take it.
Good luck with whatever you decide xxx
Hiya, Iâm another member of the pro-chemo gang. I was 36 at diagnosis (3years ago) and , like you , I had a stage 1, grade 3 tumour. Yes, on the statistics I was given, I had a pretty good chance of still being around in five years if I didnât have chemo, but and extra 5% chance of being around if I did have it. That might seem quite a low percentage of extra benefit, but not when you look at it in real terms. I run a Facebook support group for younger women, we have just passed our 300 member mark. If 200 of those women had my exact diagnosis, and I split us into two equal groups, at the five year point we would expect to still see about 90 women still alive and kicking in the âwe had chemoâ group, but only 85 women alive and kicking in the âwe decided not to have chemoâ group. For me, those are 5 real women and I want to try my damnedest not to be one of those 5 women who would have been saved if theyâd chosen to have chemo. The reason that those extra five women with no evidence of disease in their nodes will have died is that breast cancer cells do spread through the lymphatic system and usually show evidence of having moved that way in
the nodes, which is why itâs used as a threshold for having chemo. But cancer cells also escape without trace, and certainly can through the blood stream. The higher the grade of the cancer, the more chance there is that this could happen, and your cancer, like mine, was grade 3 so the most likely grade to do this. It isnât a high risk, but when you are talking life or death then the numbers seem more stark. The statistics arenât massively reliable either the younger you are, our breast cancers are often the more likely ones to have gone for a wander around our bodies and we are more often the ones to buck the statistics. Iâd personally be biting the hand off of any person who gave me the chance to be in the group where five extra women are alive after five years. I donât know what your own statistics are but before you turn down his advice, Iâd recommend that you know exactly why he was offering chemo in your position. From my three years BC experience on these forums, Iâd have been much much more surprised if a young woman with a grade three cancer hadnât been told that chemo was the best treatment option for her and Iâve have been putting my head above the parapet to urge you to get a second opinion. Sorry to be tough in my response, but I thought you wanted genuine valid views and this is my strong view. If the chemo side effects became too dangerous for you at any stage and the risk outweighed the potential benefit, your team would stop you having more chemo in the blink of an eye. If it became too much for you, you could also refuse to have more chemo. But isnât it worth seeing how you get on rather than not trying the recommended route a all? Itâs really scary,I know that, but a lorazepam off your oncologist on chemo morning will get you not that room and allow them to possibly save your life. X
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Hi
I am older, 52, and was dx with grade 2 stage 2 IDC no nodes ER+ HER-. I was given the choice of chemo and advised that statistically I had only 3% higher chance of survival with chemo - the odds were good anyway at over 90% but I saw the extra 3% as a gift. Put it this way, I was determined to do all I could to beat this disease and I did not want any regrets. Your decision is personal to you and chemo is no fun but it is a relatively short period of time to have the peace of mind that you have done all you can. I had my last chemo 8 weeks ago and although it was tough at times, it was doable and given the same choice, I would do it all over again.
Good luck with your decision and for the future.
Jaynex
Just wanted to add my viewpoint on the â5 year survivalâ statistics. Feel free to correct me if you think I am wrong.
As far as I am aware, the general 5 year survival rates include all women with the diagnosis (maybe narrowed down to stage, but with or without grade and/or hormone receptor status) , irrespective of their age or comorbidities (other health issues), so you could be comparing healthy 40 year olds and 85 year olds with multiple health issues. There is normally no distinction in actual cause of death.
The other thing to bear in mind is that the figures are necessarily based on old figures, as they have been collected over time, analysed and collated, and so might not be commensurate with recent advances in treatment.
Therefore I say, take them with a pinch of salt!
That said, my own prognosis with one of the predictor tools, which did include er/pr and her_2 status, as well as grade and stage, put the 5 year survival rate at 40% without chemo following surgery, and 70% with it! Chemo for me was a no brainer anyway, but I am hopeful that I will still be around for a long time after all this. I am 53, and I have things to do!!
Just to add to my previous post. My oncologist used the Adjuvant! website, which is only accessible by health professionals. This takes account of age and also excludes deaths from other causes. All the statistical deaths were from cancer, and all the comparisons were people of the same age at diagnosisâŠ
In my case I was told 17 out of 100 people would die of cancer within 5 years without any treatment (chemo and rads). Add in the chemo, rads and in my case Herceptin, that 17 reduced to 2. No-brainer. My oncologist also told me that the cut off line at my hospital is 2%. Anyone with more than 2% extra chance of survival would be offered chemo. Anyone under 2% might be advised it wasnât worth it because of the morbidity of the chemo itself.
(Aged 65/Grade 3 IDC/High grade DCIS/hormone neg/HER2+++/nodes clear/lumpectomy with good clear margins)
Hi there,
I know this is a very difficult time for you, I was diagnosed with grade 3 breast cancer in Dec, nodes clear, i had a mastectomy and was told I would benefit from chemo due to the grade, my risk of reoccurance is small but any risk to me is a risk and like most ladies on here have already said I want to know I have done everything I can to prevent reoccurance. I know its not the same but i have a friend who was diagnosed with BC a year ago, she was offered a mastectomy but chose a lumpectomy as she felt the risk of reoccurance compared to a mastectomy wasnât high enough, she regrets this now and has been back to her surgeon to ask for a mastectomy but he has refused stating he would consider it after she has been clear for five years- her cancer was unusual and she was given 85% chance of reoccurance. She had chemo and rads but deeply regrets not having a mastectomy. Like someone has said choose life, chemo is doable, yes its hard but this time next year you will look back and feel stronger for having gone through it without having any regrets.
Take care, will be thinking off you.
Sarah xx
Hi. I was put in the same awkward position as you and had to make the decision about whether to have chemo.
My onc showed me the prediction tool online, taking into account my age (51 at dx), tumour size (28mm) and grade (3), the fact that it was HER-ve and Er +ve. I had clear margins and no lymph involvement. All these things gave me a 5% survival improvement over an already good 80%, after 10 years. My onc stressed that this was just a statistical tool, and that there was no knowing whether those who had chemo would have escaped a reoccurence anyway, even if they hadnât had it. She also pointed out that chemo was NO GUARANTEE that the cancer would not return and that there can be long term side effects from chemo that are not to be taken lightly.
Eventually, after a lot of soul searching, I decided NOT to have chemo because I have always been of the âQuality not Quantity of Lifeâ mentality. I lost both parents to heart conditions at relatively young ages (Mum 51 (age I was at dx!!) and Dad at 73. My grandparents all died before they got past their early 80s. I therefore did not want to spend 6 months of my life getting poisoned WITH NO GUARANTEE it would stop the cancer returning. I made the brave (or foolish?!) decision to get on with my life and try to put this behind me, knowing that if the cancer camer back IT COULD HAVE DONE ANYWAY and Iâd me more annoyed at it coming back after 6 months of chemo, as that would have seemed such a waste of time when I could have been getting on with life. When I told my onc my decision she said âYes, it probably would have been overkill, in your caseâ. Argghhh!
However, I do not want to persuade you either way. You must make your own decision; one that you are comfortable with, as it is you who will have to live with it. I just wanted to let you know that there are some of us who did say ânoâ to chemo and havenât regretted it.
Chemo is expensive, so they wouldnât offer it if they didnât think it might be of some benefit, however, if your team knew the benefits would definitely outweigh the risks, you would not have been given the choice!!
Find out all you can about your own diagnosis. If your cancer is ER+ve, there are other treatments available. As soon as I declined chemo I was offered Zoladex injections which gave back 3% increase in survival. This has happened to other ladies too!
It is a horrible time for you, but once you have made your decision - if itâs the right one for you, you will feel better.
Good Luck xx
Jcj good for you and I totally agree they wouldnât offer it if not needed if its expensive but I will definitely be asking about how much the zoladex will make a difference if they do say I need chemo x which obviously Iâm hoping my nodes will be clear so I wonât need to even consider this x
Hi,
i was also offered the choice, and opted not to have chemo. For me the benefit was 1 to 2% only. I felt the side effects would outweigh that benefit.
it is a very personal choice, and as you can see we all make different decisions. I wouldnât want to influence you either way, I would say listen to your oncologist, ask for as much info as you need, but once you have made your choice, remember you have to be comfortable with it, and not constantly ask yourself âwhat ifâ.
Lynda
Hi,
For me any chance of improving survival rates was worth taking. Chemo is temporary, yes horrid but if you take each cycle at a time you reach the end before you know it. I found that I improved quicky once it was all over and enjoyed getting back to life again with a new spring in my step. I felt like I had achieved something.
Good luck with your decision
Debcully, just wanted to say it isnât just node status that determines whether chemo is recommended. Grade 3 cancers, large tumour size, her2 status and age are all reasons to have chemotherapy, and if you are her2+ you have to have chemo with herceptin x
I was dx nearly 5 years ago. Initially I was told that I wouldnât need chemo, but that changed. I was scared stiff. No need. Please donât be scared about chemo, itâs doable. Youâll be soon looking forward to your life back.
Hi I have been diagnosed with breast cancer. 9mm grade 3 tumour er+ her- and one sentinel node positive.I have had WLE and axillary clearance and been told that I will get a 4.3 % benefit with chemo and have to decide whether to have it or not. I had CMF Chemo 15 years ago for cancer in the other breast and the thought of going through that again strikes fear in my heart.
Is anyone else in a similar situation or has any advice to offer?
In the same boat, Daisy.
(This is an old thread so we may be better off to start a new one, a lot of original posters may have left the site by now⊠off living their lives and chemo is a distant memory⊠us in a year or soâs time!!)
If you are Stage II, HER2 negative, and itâs not in lymph nodes, you qualify for Oncotype DX test which far more accurately calculates your percentage survival rates based on really advanced diagnostic tests.
This test allows you and the oncologist to make a far better educated decision whether chemo is necessary.
(This test is available on NHS from Jan 15, but I suspect we may suffer postcode lotteries on adoption!) (just spotted it is in your sentinel but ask anyway, there are exceptions and I think 2nd occurrence may be one)
Investigate the options to chemo and ask your oncologist if they are viable in your case.
Personally, I have an 11 year old son that I want to grow old for and see grow up, so if that means I have to put up with 5 months of feeling tired/food tasting funny/nausea and wearing a wig, then I consider that a fair trade!!
There are some early stage cancers where chemo is overkill, yours is a mix.
9mm is small and you are not HER2+
But it is Grade 3 and was in your sentinel node, which is probably why they are saying chemo is necessary.
Just talk openly with your BCN and oncologist. They are there to answer any questions you have.
Pm me if you want to chat offline.
Niki