i had a double mastectomy a few weeks ago and I’m feeling good with tissue expanders. My lump was lobular containing 2cm of cancer and 3 cm of pre-cancer and I’ve been told that I’m borderline for chemo. I guess it’s good news that it’s not “needed” but I think it’s going to be “recommended” for us to make the final decision.
Meeting the Oncologist this afternoon for the first time to discuss it and I wondered if anyone has some advice or questions we should ask to help us make the decision.
Good luck with your appointment. I was told that I was borderline but found that when i got to the oncologist he was very clear that there was a benefit to chemo and that would be his recommendation although ultimately up to me. For me that was good enough (also looking at 10 yr % benefit) and took the worry out of making a decision. I was node + ductal.
I can’t say much on this topic. As I m not a doctor to suggest on such a topic. You can also take help from some natural ingredients on this disease too I believe.
I’d be interested to know what you decide. I had my first ONC appointment Thurs and I was told the % benefit for having chemo is 3%. I know 3% is 3% and I want to be here as long as possible but the other part of me is wondering do the risks outweigh the benefits for me? For me it’s not just the side effects whilst going through it which are horrendous enough it’s the long term side effects. It hasn’t helped my husband researching it in depth and telling me his findings ! I had full node removal and find out the results of that this week. If any nodes are affected then I think I’ll def have the chemo. If not then I may well get a second opinion. It’s so hard when the decision is left up to you. My greatest fear is refusing the chemo and having a recurrence in X number of years and thinking why didn’t I go for it. I do think I’ll end up going for it regardless but the effect it may have long term may cancel out my 3% benefit. It’s a tough one x
Sorry if I’m out of line here but wondering who this poster below evanmarcus is? This is a man’s name surely and some slightly odd posts…sorry if I shouldn’t say this and its a free country but it just set off an alarm bell…
I am in the same boat as you as weighing up the side effects , stress involved not just for me but the whole family if it’s only a small margin. But then as you say if it reoccurs we will then doubt our decision if we don’t have it. I just wish they hadn’t given me the decision ! Good luck x
It’s a hard one isn’t it. Saying that I’ve had a chat with my BCN today and found out I can have the Oncotype test but privately. I’m a bit annoyed that I wasn’t given this option initially as I was categorically told with one lymph node involved there was no point. What I wasn’t told was there was no point on the NHS but privately I can have it done. I’m back Thurs so will discuss it then in further detail.
Good luck with whatever you decide. Xx
Hi Sarah. I’m hoping to be offered the Oncotype test when I meet with the oncologist next week, as my surgeon felt I would now be eligible - I wasn’t initially but the b***** was bigger. Have they said why you aren’t eligible? It’s such a hard choice to make when percentages are low. On the issue of strange posts, I think the moderators are scrutinising more today, as the distressing post from yesterday has been removed. Good luck to all of us making difficult choices xx
Hi Janey
I’m not actually sure as we mentioned the Oncotype test right at the beginning and they said no because one lymph node is involved so we shelved the idea. We then looked at the Endopredict test which can be given with up to 3 nodes affected so I phoned yesterday asking for the Endopredict. The nurse just kept mentioning the Oncotype so I said that the surgeon had already dismissed that due to one node being affected. She then said we can’t do it on the NHS with nodes affected but you can have it privately with up to 3 nodes affected! I feel they should have said this from the start. We have private insurance and are fortunate enough we can pay for the test regardless but I feel everyone should be told the options whether NHS or private as if people can pay or have insurance it can give extra options eg the Endopredict. Saying that I can’t fault my NHS team as apart from this misinformation they have been fantastic.
What is I forgot to say although my benefit is 3%, the chemo itself carries 2% risk which potentially gives me 1% benefit overall according to predict. That’s why I want the Oncotype or predict as its more accurate. If my percentage then goes up I can make a more informed decision. They have also said that for me the Tamoxifen is the greater benefit, the chemo is belts and braces.
I hope that makes sense! It’s a decision personal to each individual and as long as you can live with the decision that’s all that matters. I have friends giving opinions left right and centre but although they are trying to help, unless you are in this situation it’s impossible to say what you’d actually do
Xx
Sarah you are so right. I had heard of the test a couple of years ago. It was pre NHS funding and my friend paid privately. She had ordered wigs it was so definite she was to have chemo and then the results came back way under 18 and no chemo. Xx
Hi Janey
I’ve already had my hair cut short in preparation for the cold cap, and bought several child’s toothbrushes. At least I’m prepared if they say I need it! Xx
I’ve yet to go to the hairdressers but thinking about stocking up on pineapple. It’s such an unknown and will be very glad to finally meet an oncologist and know what’s in the offing. I hope you kept the toothbrush recent and have to return them xx
Just to let you know how I got in yesterday. The ONC made space for me to go over any further questions with him. He basically said the Oncotype test is not as accurate for younger women. Great! So he said I could have it if I wanted it but felt I’d be wasting my money. So in short I’m going for the chemo. First session 8 Sept. Wish me luck ! Xx
Wishing you huge luck and thank you so much for letting me know. I’m still waiting for 1st appt with oncologist. The Summer holidays have knocked everything back about a month I think! It has been interesting to see the range of results from Oncotype that people have had on here, even if the pathology seemed the same. Thank you again and I will let you know what I’m told next week, maybe we will end up on the same chemo thread! Xx
I know this thread is quite old but I am looking at the possibility of having onco testing done if my 2nd test results come back as borderline too. I need to be sure before going down the chemo route. I know this may have to be paid for does anyone know how much it costs please? Thanks for your help xx
Hi Alibobs. If you are in the UK and meet the criteria for the Oncotype test, then you should be able to access it free of charge. Pre my first surgery I was told I didn’t meet the criteria. However, I had to have second surgery to get better margins and then did meet the criteria. I was the one who asked my surgeon again. It felt like a long wait to get the results but I was very lucky and had a score of 17, which indicated chemo would be of no real benefit in my case. I should add I had no lymph node involvement.
Wishing you every luck with your next steps xx
Thank you I am in Yorkshire and going for my results today. Extremely nervous!! I will try to remember your advice when i speak to the surgeon this afternoon.Please keep everything crossed for me xxxxxxx
Hi I have had it confirmed… no chemo!!!what a relief!! Letrozole and rads for Me!! So thankful. I am wary of side effects of letrozole but obviously need to see how I go. All the best everyone ?