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Oncotype discussions tomorrow - sleepless night

6 REPLIES 6
MAHJfarn20
Member

Re: Oncotype discussions tomorrow - sleepless night

Can you explain what the oncogene results are? I am seeing oncologist on 28/7 to discuss the possibility of having chemo (big u turn-was told in March that I wouldn't benefit from chemo as it isn't really a benefit with lobular cancer. How is your score decided? Thanks
AliOG
Member

Re: Oncotype discussions tomorrow - sleepless night

Hi Jlia,

 

Both of us on this thread have been in pretty close discussion about our decision to have chemo or not and, as it stands at the moment, we have made different decisions. I believe Sandra is going straight for radiotherapy and hormone therapy while I'm starting with chemo on Monday (tonsilitis permitting). We've both made our choice for different reasons and I guess every individual is different too so there really is no right or wrong - which makes it so very hard! 

 

It's a really difficult decision to make and both of us have taken probably far longer than we thought to make up our minds. What has been particularly difficult for me is that I have changed my mind several times and have swung from being adamant that I won't have chemo to being adamant that I will. At times the decision making process was beginning to drive me mad and I found it emotionally really draining and very upsetting, particularly when friends and family members all have their own opinions and perspectives on whether it's the right way to go or not. 

 

Whatever you choose, I would suggest the following as practical tips that ultimately helped me decide. First, don't rush the decision. I believe there is an optimum window between having surgery and starting chemo (about 6 weeks I was told) but you do have time to gather all the facts. And this is the second point - the facts! These statistics can be quite slippery and how you read them can be manipulated a bit. It is really useful to get a second opinion. My first oncologist who went through the results with me was keen for me to see a second oncologist to go over it again. This really helped as they both had quite different opinions. Although this was quite confusing it did force me to look carefully at the statistics and make up my own mind. Once I'd made up my own mind and properly owned the decision, things became a lot easier. The third thing that REALLY helped was talking to the chemotherapy nurse. She is used to caring for women going through this and was able to allay some of the fears I had about the treatment. She talked me through the emotional stuff rather than the bare statistics on the page. The fourth thing that helped was speaking to people who have had chemo and reading the monthly thread on here of ladies going through it. Finally what helped me decide was speaking to HR at work and seeing how the decision either way was going to affect things there. I know the decision should ultimately be about health but these things can't always be taken out of context. Sometimes there are work/family commitments that do come into the equation and I felt I needed to take these into account. 

 

I hope that helps. Whichever option you decide, I think you'll know when you've made the right one for you as you'll get peace of mind - well, as much as you can in this situation! 

 

I wish you all the very best of luck with this stage of the process. x

Jlia
Member

Re: Oncotype discussions tomorrow - sleepless night

Hi there
Just wondered if you decided to go through with the chemo? I feel like we are in a very similar situation; I have had three surgeries now (the last being a mastectomy 6 weeks ago). I received my oncatype DX results yesterday with a score of 25. I'm in the intermediate category and I don't know what to do to for the best, the decision for chemo is being left up to me ultimately and I'm really struggling!
How have you been managing!?
X
SandraSussex
Member

Re: Oncotype discussions tomorrow - sleepless night

I think it will just be the 1 oncologist who is young and very keen (female) My BCN nurse will be there if she picks up the message that my appt has changed! I am terrified of chemo but I know I want to throw everything at this cancer thing....don't want to go through this again.

If the side effects outweigh the benefits of chemo then I would probably decline!

It's the hanging about....just get on with it!!!!

Hope you get some sleep tonight! x
AliOG
Member

Re: Oncotype discussions tomorrow - sleepless night

Hi Sandra,

 

Well done one for getting your appointment moved! And best of luck with it. I'll check back with you on here to see how you get on. I'm going to do my best to go in with an open mind but it's not easy, is it? I've no idea why they've got 7 people to see me. Do you know how many people you're seeing? I think it might be because I've been part of a clinical trial. Guess I'll just ask them tomorrow. 

 

Fingers crossed they they give us both some clear guidance and advice. Virtual hug!

 

x

SandraSussex
Member

Re: Oncotype discussions tomorrow - sleepless night

Hi Ali!

I am going to see the oncologist tomorrow now! Managed to bring the appt forward from the 19 th! I have a friend who is PA to the oncologist so she managed to change appt as I am anxious!

My meeting with my consultant showed that I will probably need chemo because of the vascular element of my cancer! I will of course listen to the statistics but if offered chemo I am going to be brave and take it!

At least it will be all over for Christmas! Let me know how you get on tomorrow and good luck!

I will virtually holding hands with you! Don't forget seven is a lucky number!

Sandra x
AliOG
Member

Oncotype discussions tomorrow - sleepless night

After a period of very settled sleeping, I had a horribly sleepless night last night. I have a hospital appointment on Thursday afternoon to discuss the results of the oncotype test. It feels as if I've been waiting for weeks and weeks for this and the anxiety has been building. My BCN told me over the phone that my score is 20 so I fall into the difficult in between category but I really don't know what that means in real terms. I also know that score has to be read in conjunction with other factors. However, the decision to have or not have chemo has been constantly on my mind and I'm starting to wear myself out with all the what ifs. It seems like an impossible decision to make for anyone. I can't even decide what to have for tea anymore so I really don't think I can be trusted with this one.

 

My appointment tomorrow is with seven oncologists! This fact alone has sent me into a spin. Surely this isn't normal? 

 

So although tomorrow is Election Day, my meeting with the Secret Seven will be occupying my mind. I hope after tomorrow I'll have a clearer vision of what lies ahead. Anyone else in a similar position driving themselves mad with this? X