Im 48, just yesterday i returned from my appointment to hear my treatment plan. Initially was told grade 2, its in fact 3. 18mm Had wle, all clear, no nodes involved but sign of vascular invasion he said. Er and her2 positive.Suggested treatment is hormone therapy. …herceptin (hope im getting the words correctly ),radiotherapy and chemo. I asked if chemo was necessary and he said "well obviously youll chat to an oncologist at your next appointment and discuss it , but there are no guarantees at all, you may have no more cancer return ever,or you may, plus there’s no guarantee that the chemo will rid any cells anyway, so like all treatments itd be your decision as was the surgery "How am I meant to “decide”? Im married with 3 kids, 21, 1o and 7…im watching my dad struggling and fighting through chemo every day, i haven’t even told him cos he said if i was ever to be ill itd kill him literally, ! I couldn’t work either as i work in a special school, weve booked a holiday for august, i wont be able to go either
Ive read on another site about some oncologists who offer herceptin without chemotherapy. …anyone ever heard of that? My minds thinking why throw poison in my body to attack cells that probably aren’t even there! He himself said Tina. …we can’t tell but its used as a preventative for cancer…but you may never have it again as I’m pleased there’s totally clear margins and none of the 3 nodes were involved. Couldn’t i ask for more surgery to see if again it’d be clear as that’d help my decision making?? Sorry to go on n on xx
Hi Tina, I replied to your other post but just saw this one too. I’m sorry you are having to make such difficult decisions and wish you all the best. Hopefully you will find a lot of your questions answered when you speak to your oncologist.
I’m 49 with 2 kids (13 and 15). My diagnosis was a little different to yours because I started with widespread high grade DCIS and therefore had a mastectomy and recon. However, the post operative results revealed 3 tiny tumours that were grade one Her2+ with signs of vascular invasion but no lymph node involvement. Therefore, like you I had to decide whether to go ahead with chemo/herceptin but no rads. I imagine you will also be offered tamoxifen if you are ER+?
It’s such a difficult and personal decision to make but I wanted to let you know that I’ve been where you are and I’m surviving ?. Thinking of you X
Tina first so sorry to hear what you are going through. You are in the worst part of the storm now between diagnosis & starting treatment. My diagnosis was identical to yours, even down to the initial grade 2, then changed to 3. I gather that Herceptin is only licenced in the uk to be given with chemo however there is a trial for Herceptin only. I was told I might be eligible, but when changed to grade 3 told definite chemo. It is not as bad as you expect. It’s still horrible & goes on for ages, but it’s a group of different things that make you feel slightly I’ll rather than one huge thing. I only had a couple of days where I would have felt unable to care for children. I played golf throughout chemo if that gives you an idea of the impact & some people worked. Get weekly Paclitaxel if you possibly can. Although it’s a pain logistically there are few SEs for most & you can keep on living your life, albeit not quite how it was before. If you want to ask me anything I’d be more than happy to help. How are you sleeping? All the best xx
Well I’m looking at trials but not sure I’d qualify. I’m looking at lapatinib and herceptin. I’m determined to look at every avenue. I’m struggling watching my dad go through chemo…he doesn’t know I’ve had surgery as he’s v delicate and it’d literally kill him. I detest the idea of putting poison In my body to “try” (docs words) and prevent reoccorence.
Surely someone o here’s refused it? I’d love a chat to aid my decision. Xx
Why couldn’t i ask for more surgery to help my decision?
Hi Tina,your Oncologist will talk you through the statistics re your benefit from chemo,it’s a very personal ,difficult choice ,benefits v side effects.Lots of ladies on the forum have had this dilemma and some have made the decision not to have chemo .If you search the key words on the site you will bring up discussions about the subject.Good luck.Jill.
Tina I am very focused on healthy living … Good diet/exercise, so like you, I just hated the idea of putting chemo into my body, but I knew that I would wish I had done it if it ever came back. This way I know I have thrown everything at it. Similarly I didn’t like the idea of radiotherapy or tamoxifen either, but when I looked at recurrence stats I realised they made a huge difference. They aren’t sure who benefits from chemo & there are various recent developments in this area you may have read about. it’s really just about risk reduction. I would wait to discuss with the oncologist,who specialises in this area, before making any ‘l will/won’t decisions’. You could speak to the helpline & chat it through with the brilliant nurses in there or even ask to speak to someone who has been in your position. Hope you are ok. Big hugs xx
Hi Tina, in answer to your question on the other thread I don’t know if you can specify only one chemo and then herceptin but I don’t see why you can’t ask if you think that might be best for you. If you search for “offered chemo unsure whether to have it” you should find some relevant posts.
i found it very helpful to have a dedicated book with all my questions written in so that I didn’t forget any at my appointments. I also took someone with me so that they could help me recall what was said afterwards if I was overwhelmed by information.
In considering which way to go, I also found it helpful when my oncologist told me the relative percentage benefit of each part of the treatment ( based on a multitude of women with similar diagnosis).
You already know which way I decided to go but we are all different. I wish you all the best in making your decision and am thinking of you X.