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Oncotype dilemma HELP!!!!

14 REPLIES
Member

Re: Oncotype dilemma HELP!!!!

Hi Chestnuttrish. I just wanted to let you know that I joined the Optima Trial (after much researching). I had a lumpectomy and full ANC and had 4 nodes affected (2 micromets). I had to consent to chemotherapy and joined the trial (it means also because of my age I have a monthly zoladex injection to suppress my ovaries). I was fortunate to be tested (it's a blind trial) and it showed that I didn't need chemotherapy. If you would like to ask me anything then let me know. Michele 

Member

Re: Oncotype dilemma HELP!!!!

Yes it really is! I wanted another one done the Mammaprint. No intermediate just low or high, much easier for the brain to cope with. Sad thing is since I got that score I just feel I’m doomed anyway. Bound to recur. But it’s irrational I know as it’s less likely I will on the stats just more likely than some ...think it really depressed and shocked me:/ no wonder my husband been going out for runs and bike rides!
Member

Re: Oncotype dilemma HELP!!!!

Daisy do
3 surgeries is enough for anybody. I hope your nodes negative it’s always a relief. But if you have a low Onco score it’s not a problem. Mine was a grade 2 as well. Docs were shocked at my score. There’s a lot of science behind it but as with everything it’s just statistics. I know someone who had 34 score and refused chemo and is fine 7 yrs later... her coworker had score of 4 and recurred! I actually wished I hadn’t had test as it’s ruined any peace of mind...even with chemo it’s no guarantees. How did your friend cope with a 33 score? It’s not mega high but the docs (mine did) scared me with recurrence tales. But I think I scared him back when I questioned him!! I’m feeling so wobbly all the time as thought I’d dodged the chemo bullet. Tossed a coin tonight and best of three said don’t do it. I haven’t really a choice as doc says I should do.it. He said he lived in ‘cancerland’ and with that score you did it. But I researched and the scores of 26-30 are not definitive at all. Hence my brain freeze. This decision is hardest thing I’ve ever done as the stakes are so high. I will prob do it but only out of fear. My other brain is saying run for the hills and eat flaxseed and turmeric and broccoli! Bought about 8 books on how to protect yourself from recurrence naturally!! Ahh I do wish you all the luck on Wednesday , results are the pits. Mine were delayed till after Xmas but was relieved they were good and began to feel hopeful again... then the oncotype score. I might pretend they got it wrong or mixed up😂 thinking of you Dausydi. What a world to find ourselves in - of surgeries and fears and hopes and shock...and decisions ... but we will be ok. I’m no battling warrior princess (more a strawberry blancmange) but all will be ok... love for Wednesday xxx. Oh and don’t do the test😂you might end up a deranged nut like me!!!!
Member

Re: Oncotype dilemma HELP!!!!

Follow the link I posted earlier. It explains that, for someone 50 and under with a low score, chemo will not help.
I think it's because of all the other untold damage that chemo does to your body, lowering your immune system etc and therefore making you more susceptible to reoccurence.
Your comment about how many women have had chemo unnecessarily: I think that's the whole point of this relatively new test, the results are based on YOUR circumstances, because they test YOUR tumour, rather than being based on average statistics. That's how it was explained to me anyway and I agree, it's mind blowing.
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Member

Re: Oncotype dilemma HELP!!!!

Hi Sissy I really understand what you are thinking and have just been having this conversation with my sister.  I will get my results on Wednesday.  I have had 3 surgeries and the last one included anc.  In my first surgery 1 out of 2 lymph nodes was positive.  I am hoping that no more are because I would really like the oncotype test.  A friend of mine had a score of 33 with a Stage 1 tumour no lymph involvement but grade 3.  She has had chemo.  I am grade 2 not quite sure of staging until Wed but currently it is stage 2b.  I would love to have the choice of chemo or no chemo and would far rather try to change other aspects of my life now I know a bit more about things I can change.  I understand your dilemna, always worse being on the borderline of stats.  I dont think I would need to  be swayed too much to avoid chemo.  Let us know what you decide.  Good luck x

Member

Re: Oncotype dilemma HELP!!!!

Did they explain why it would increase your score?
Member

Re: Oncotype dilemma HELP!!!!

Chocxsie... can you tell me that again?!! Having chemo would INCREASE your recurrence?!!! Is that for real. If that’s true imagine how many women have been over treated and put at risk ... the whole thing is scary. I’m thinking of tossing coin as have no faith anymore Smiley Sad
Member

Re: Oncotype dilemma HELP!!!!

Hi Sissy

So sorry you're having to make this tough decision. Is the following any use:

https://www.mybreastcancertreatment.org/en-US/LearnAboutOncotypeDX/OncotypeDXScores

I expect you've probably seen it but, just in case you haven't, does this simplify things for you?

I had the test done; I'm 50 and scored 11. I was told that having chemo would increase my recurrence score to 18, so definitely no benefit. No-one mentioned the second tier stats that are understandably causing you confusion.

Good luck, it's so hard isn't it, having to trust what you are told. There are still so many unknowns it's all quite worrying, I am trying to stay positive but none of us really know what the future will hold.

Xx

Member

Re: Oncotype dilemma HELP!!!!

Still in hell actually... really beginning to have a bad effect as I’m not sleeping or eating much Smiley Sad It’s a lonely decision for sure. Did you have the oncotype test? That was dealbreaker for me. Up until then I was rads and hormone .no lymph nodes and stage 1. .. thought I’d escaped the chemo. Been looking at stats and data all weekend and the benefit is clear but at my borderline score it’s minimal... 85 out of a 100 will not benefit. It’s a risk. But chemo is a risk isn’t it? I’d do it with positive attitude if I thought it would benefit me but it’s just so marginal. But if it lowers risk of recurrence a tiny bit maybe it’s worth it? But poisoning a healthy body doesn’t feel right - but it’s against future recurrence. Which is 19% for me! So 81% not. Oncologist says she has to recommend it but it’s not for everybody and a high price to pay. I really need to make decision this week and it’s breaking me down:/ They just throw it at you and it’s sych a big thing. Year out of your life and grim with not obvious benefit. My husband and friends are stunned at this tbh!! But it’s our body and our decision. Did they give you a chemo benefit percentage?? Mine was just under 3pc on the pathology. But the biology of the tumour showed it was a higher risk despite my good clinical outcome. Wish I’d never done it! What’s the optima test?? Is that gene test? How would it protect you from recurrence and what stage did they give you? Poor us. It’s truly cruel 🥺 if I don’t do chemo I will feel guilt I didn’t give it best shot - but if I do the vast probability is it’s a waste of time and health!
Member

Re: Oncotype dilemma HELP!!!!

Hello Sissy
I just wonder what you will decide, I have a similar dilemma and need to decide by Wednesday.
Had lumpectomy, and two nodes removed one had cancer.
I can choose to have chemo,
Just to have rads treatment + tablet for 5 years
Or go in to the Optima Trial, and let computer decide.....
I wonder if the Optima Trial is just to save the NHS money....
Very confused, we don't need this....
Hope you make the decision that is best for you, good luck ..
Community Champion

Re: Oncotype dilemma HELP!!!!

Hi Sissy, not a lot of help on this one, but I do feel for you.
You’ll get there & whatever you decide will be right for you.
ann x
Member

Re: Oncotype dilemma HELP!!!!

Think I’m losing the plot. It’s a maze and no upside.
Stats are just overwhelming and there’s only so much research. But facts are facts. I got a 19 per cent chance of recurrence and 81 not but the evidence is big that chemo is of benefit. To 150 out of a 1000. I have no idea what to do aaa feeling fit! Doc said I was cancer free! So yay let me go and put toxic stuff in it for a chance at not getting recurrence which we all know happens with estro bc. But I’m statistically more likely. Think a Valium is required😂
Member

Re: Oncotype dilemma HELP!!!!

Hi sissy60, what an awful situation. You should not be put in that position! Have you reached a decision?
Member

Re: Oncotype dilemma HELP!!!!

Dear Sissy,

 

OMG, please please get a second opinion ASAP Or telephone Breast Cancer Care. 

 

Understand you  don't know if your on your head or heals. Lots of luck and a big hug 🤔

Member

Oncotype dilemma HELP!!!!

Had stage 1 no lymph node/vascular involvement. Set for hormone and radiotherapy. Then my score came in at 30. I’m 60 so it’s in the upper grey area. Was very disappointing. Felt same as when first diagnosed Smiley Sad Saw oncologist first time today and it blew my mind! Because I’m not high over the edge he explained why he recommended chemo. I have a 19pc chance of future recurrence so 81pc of not. Works out 1 in 5 approx. I thought that having the chemo would benefit me and stop recurrence but as he further explained it for every 10 women with a score of 30 chemo only benefited 2. So eight would be having it for nothing I ask. Well, yes, he said. So eight women will suffer chemo for no benefit?? Yes he said. BUT in 100 women it will prevent recurrence in 15. Okay... so 85 will not benefit? Yes he said. My mind was blown to be honest! Chemo destroys immune system as we know so why leave all those 85 women who just had BC surgery vulnerable to
infection and unable to fight those little circulating cancer cells... ?? Wouldn’t they be better eating broccoli and going for runs to protect themselves from recurrence if chemo is no benefit to the majority. Chemo is great it saved my friend who had lymphoma (which she got as a result of chemo for BC!) but it does save lives. What I cannot understand is the odds aren’t great... yet he insisted I had chemo? He talked of greater populations so I assume they are looking to bring down recurrence countrywide which I guess it would. But at what cost? The women it won’t help could be left weaker and more prone to recurrence as a result of weak immune system. I was told it would be of 15pc benefit to me... yet only a 2 in 10 chance of it helping. My mind is sooo confused. I thought it would help my recurrence score but it more likely won’t. He said I was already cured by the surgery. It’s for future recurrence. He also agreed when pressed that the chemo doesn’t neccessarily prevent recurrence anyway!! Does this seem weird to anyone else?? Am I missing something?? I need to decide by Monday omg... it’s not logical to me and I am so surprised and confused . Anyone with any knowledge please help me at it’s all stats and he said it was like insurance in case you got broken into ( but no certainty the insurance company might agree to pay out). Aagh!!!!!