Oncotype score 16... anyone gone for chemo?

H Bumble82 welcome to the forum and I am so very sorry as to how conflicted you are feeling and little wonder that you are feeling that way. I can appreciate where your Oncologist is coming from they can't really push either way as you have to make the choice that is right for you when you are armed with all the information required to make that choice. 

I didn't have chemo so  not much help with your dilemma but I feel sure some of the the lovely folks on here might have different stories and information that may or may not be of help for you.

I appreciate that the risks are high for you all should you decide to go for the chemo, but in my mind and it is only in  my mind, you can't base your decision on the risks to others without being happy that by not doing this will be no risk to you. Hope that makes some sense?

Looking at your post your Oncologist has suggested that the benefit would be just over 1% with chemo based on the Onco score, which I know little about,

However and this is where it gets difficult, the answer is yes, you could be the 1 in 100 who benefits from chemo and we all have to take and make these choices when it comes to treatment and we hope that we make the right ones based on the best available information for us.  So in reality nobody can make this choice any easier, as you have to decide what you can successfully move forward with and live

your life with peace of mind. The reason I say that is that I have made a choice similar to yours but mine was medication to block Oestrogen and after careful consideration I decided based on all the available information I was not going to take that. I am happy with my choice but I cant tell you that I dont wonder all the time if I did the right thing but the symptoms were so intolerable my quality of life was being affected .

I hope some of what I have said makes some sense if not just ignore me, that's ok. sorry not to have been of more help as well but hopefully given you some thoughts. I should also add that I was a lot older than you when I was diagnosed .

Meantime I'm sending you some huge big hugs for now and do please come back and let us know what you do decide to do.     xxxx

I didn't have an oncotype test as one node was found positive after surgery (followed by clearance with no others affected), but did use this https://breast.predict.nhs.uk/tool.

I really didn't want chemo at all as I'm sensitive to medication,  but it showed a 4% gain (since updated to 3.5% gain, grr!) at 10 years. Your tumour is a bit smaller than mine (I was 2.7cm and grade 1-2) with no LVI. if I was grade 3 and your age I'd have the  chemo. On Predict it suggests the average person your age and pathology would have a 4.3% gain at 10 years if taking Tamoxifen as well, and about 6% gain at 15 years.  Chemo will harm in some way about 3% of people, mostly nerve or heart damage,  so it really is up to you.  I can say though that I'm really struggling with Letrozole and it's side effects,  as do about 30% of women on hormone blockers,  so I'm glad that i did the chemo (I think!) Good luck whatever you decide...  if only we could look into a crystal ball!

Hi Granny 59

I would be interested in your NHS PREDICT STATS/ available info, and your reasoning on how you arrived at your decision to pass on oestrogen blockers.  

My interest stems from my wife deciding to not take Tamoxifen.  She has an inherited eye condition which resulted in 2 fairly recent corneal transplants and cataract lens replacement.  Her eyesight is now excellent following significantly deteriorating vision.  Endocrine therapy has a known detrimental effect on 'normal' eyes, and her eyes are not normal!  It is very much a niche situation with no research as far as we can determine.

The potential for stroke and blood clots etc were also of concern, because of her maturity.

She has had a lumpectomy and 5 days Fast Forward radiotherapy.  Her NHS PREDICT STATS for taking Tamoxifen is a 1% gain for 5 years, 2% for 10 years, and 3% for 15 years, and this is excluding radiotherapy in the mix.

The benefits of Tamoxifen are not that statistically significant, but it is a systemic benefit whereas the RT is only a local recurrence benefit.  

Like you, she does worry about having made the right decision, as I do.  I usually provide a directional input when health matters are involved but have found this one too difficult.

Apologies for tagging this onto your thread Bumble 82, but it is a kinda similar serious decision-making issue, which Granny 59 alluded to.

With regard to your specific decision concerning chemo, I have personal experience on that matter.  I did not want to take chemo because of the potential side effects and well-being issues.  At one point I had definitely decided I was not going to take it.  With subsequent recovery and hindsight, I am now really glad I did.  The good point of chemo is you take it and it is eventually done and dusted.  Unfortunately, endocrine therapy is required for at least 5 to 10 years and longer.  Considering your age and diagnosis, I would join with LMof2 and steer you in the same direction, but as with my wife, the decision obviously has to be yours, after weighing up the risk-benefit.

Incidentally, there was something in the media a few days ago where they now reckon that chemo does not put you at greater risk from C19.  If you search for it you can possibly find it.

D  

Hi Dedalus if you put the info into the NHS PREDICT TOOL it will give you the survival rates for surgery at 5, 10 and 15 years and the numbers are the high 80's and 90's without Oestrogen Blockers so between the Breast Specialist Nurse and myself we made  the choice. The thing was that I had some other Gynae issues as a direct result of the Oestrogen Blockers which were seriously affecting my quality of life so for me there was no contest about my choice but you always have an element of doubt and I expect if I had a recurrence then I might question my choice but all well so far.Hope that is of help.x

Hi Granny 59

We did use NHS PREDICT and with Tamoxifen the benefit was 1% for 5 years, 2% for 10 and 3% for 15 years.  We were interested to know what your NHS PREDICT gains were when taking an oestrogen blocker, at 5, 10 and 15 years respectively.

D

Hi Dedalus as far as I can remember it was in the region of 1% for 5,10 and 15 years. 

Thanks Granny59.

That suggests you must have been grade 1 with a smallish tumour.

I can understand your decision in that context.

D

Hi dedalus yes lump was small grade 2  0 lymph involvement and invasive lobular x

Hi, 

I'm 41, have had ER +, her2-, prog- BC. I was diagnosed in February and have had a lumpectomy and radiation during covid. I also had an onco test as no lymph involvement. My score was 18. I was told that this was a low risk and the benifit of chemo was only 1%. (16-20 gives 1.6% benifit). I was relieved as like you also have young children and then covid on top of that doesn't help. I spoke to the nurse to ask her if I was being told no chemo due to covid? The answer was not at all. Even without covid 18 was low risk and the risk of chemo itself did not outweigh the benifits of not having it.

You are right, like me I can see you want to throw everything at it. But your oncologist will discuss you and your results in a MDT meeting. Also, the oncotype results are quite reliable. I have really looked into this. I do find the predict a bit vague as results have been based on various women with other issues, e. G. Smokers, non smokers etc. They are just general tools but your onco looks into your cells.

I hope this helps. But remember we can always be

that 1%, we probably have a higher chance of an accident, a woman has a 1 in 8 chance of BC in the general population, that's a 13% chance of getting BC. What I'm trying to sya is that we can statistically " what if" everything in life.

Whatever your decision I wish you all the best. 

You'll also be taking Tamoxifen (I'm presuming that rather than letrizole based on age) for 5-10 years which will make a difference:)