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Probably being really silly

6 REPLIES 6
mork01
Member

Re: Probably being really silly

Thanks all for your help my cancer was also very er+ but no nodes involved. Have just completed the predict tool and it gives an extra 4.3% at 10 years. I think I will make a list of questions for my oncologist.

Thanks and take care all x
Lakeslover
Member

Re: Probably being really silly

I agree you need to ask enough questions to be comfortable in your own mind.

My situation was slightly different, I was grade 2 but with 1 lymph node affected, strongly ER+ve My Oncologist gave me the choice of chemo or not. After going through the survival stats there was approx a 1% improvement in survival after 10 years if I had chemo, so I decided not to.

So if you need to be sure you can either ask your oncologist to go through the stats for you, or you can do it yourself using an online tool called predict. Just be sure you want to know the actual figures if you decide to do it yourself, some people don't.

mary32
Member

Re: Probably being really silly

Hi Mork01

 

I agree with everything that has already been said but just wanted to add that I too had grade 2 invasive lobular with no spread and was not offered chemo, so it is pretty standard I would say.

 

Mary

songbird68
Member

Re: Probably being really silly

Hi Mork01. IMO you are not being silly. It's a fair question to put to them, about how they decided no chemo. What tests have they done, what is your predicted results with/without chemo. I asked about the oncotypeDX test, but my BS said he did not think it necessary. I did make a bit of a fuss about it.

 

I was grade 2 also and questioned that - they said it scored 4 on the Nottingham test, which means grade1/grade 2. Low grades do not usually respond well to chemo as they are not fast growing enough.

 

They did the ki-67, which came out with a really low score and that is good. It meant I only would get a minimal benefit from chemo, so I am on tamoxifen.

 

I am happy I asked lots of questions, their answers and reasoning made me feel that they had my best interests at heart:)

Well, that is my take on it, I hope another point of view helps

All the best x x

 

hijaqs
Member

Re: Probably being really silly

Hi mork01,

I think that chemo is proposed when there is a possibility of cancer having spread to other areas of the body.  A biopsy of the lymph nodes would show if this is the case.  My diagnosis and surgery seems similar to yours and I'm not expecting to have chemo either.  Obviously express your concerns to your medical staff though, even just to put your mind at ease. Xx

Sam_BCC
Member

Re: Probably being really silly

Hi mork01

 

Firstly welcome to the BCC discussion forums.  I am sorry to read you are having a worrying time at the moment, hopefully some of the other users will be along soon to offer your their support and experiences.

 

In the meantime you might find it helpful to give the BCC helpline a call and talk things through with a trained member of staff.  Here you can share your feelings and concerns with someone who will offer you a listening ear as well as emotional support and practical information.  The number to call is 0808 800 6000 and the lines are open Monday to friday 9 to 5pm and Saturday 10 to 2pm.

 

Best wishes Sam, BCC Facilitator

mork01
Member

Probably being really silly

Hi

 

Am I wrong to be worried that I am not receiving chemo .I was diagnosed with grade 2 invasive lobular cancer (35mm)and I have had a mx and now on tamoxifen for 5-10 years but its worrying me that not everything has been thrown at this to make sure it's gone. I know it sounds silly and I should be over the moon that I'm not getting it but ever so slightly worried.

 

Thanks