Newly diagnosed and I need help urgently, please!!

Hello, to anyone who is reading this. I have already had my surgery and been told the cancer is hormone senstive, and will need radio therapy and anti hormone treatment, but that I have to make the decsion on whether to have chemo or not. I am 38 and this aswell as the fact the cancer is hormone sensitive is why they want me to decide.
Has anyone else been in this situation. I have to wait a week before I speak to the chemo team but I’m trying to find out as much as I can before then.
I was only diagnosed on the 13th of October so at the moment my head is completely cabbaged.

Any help would be fantastic. xxx

Hi gremlin

Welcome to the Breast Cancer Care caht forums. Whilst you wait for the other users to reply with their knowledge and experiences you may find it helpful to read the BCC publication on chemotherapy. It is intended to help you learn more about chemotherapy, explaining what it is, how it works, and the benefits that may be gained from it.

If you would like a to see it on line or order a copy just follow this link:-

breastcancercare.org.uk/upload/pdf/chemotherapy_07_web_0.pdf

I hope this is helpful.

Kind regards
Sam (BCC Facilitator)

I had mastectomy, SNB and am now on Tamoxifen so didnt have rads or chemo so cant help you but I just wanted to say get as much info as possible and the ladies on this site will certainly do that so hang on and they will answer. I wish you all the very best.

Bumped
Daisyxxx

Just saw a thread “Chemotherapy after surgery” - you could talk to the woman on there and they may help.
Dx

Hi Gremlin
as ‘daisy do’, I don’t have experience that would be helpful to you but wanted to wish you well - I hope you get the support you need to make a decision that you feel good about - I’m sure you will get that on this forum
take care, Monica xx

Hi there,
I’m sorry i can’t advise but I seem to be in almost exactly the same postion as you. I was diagnosed on 17th sept and had surgey on the 14th oct, I’m actually just waiting for a bit more surgery to increase the margins but then I will have the same decision to make. I am eligible for hormone treatment and will have radiotherphy but as I am 26 I have been advised that chemo will be discussed and is likely to be suggested. Quite frankly I am willing to do whatever is recommended though i am s**t scared. I am thinking that the physical effects of chemo are better than the mental angst I will suffer knowing i never took the opportunity but then i haven’t been though it and i expect nothing can quite prepare you for the reality and i am probably quite naive.

Please let me know how you get on with your decision. I am waiting for an app to come though with my oncologist to discuss all the options.

Best Wishes Claire

Hi Claire, thanks so much for this. I have had the next surgery you are waiting for, I had the margins increased and 12 lymph nodes taken out. The op isn’t too bad, but the feeling under your arm is weird. I also then got fluid on my breast, which basically means you slosh as you move. Not nice but tell your nurse asap as they can take the fluid straight off and you don’t feel a thing as she does it, and the pressure release afterwards is great. I’ll let you know what happens.
Best wishes Jo aka Gremlin xxx

Gremlin

It seems a bit unfair that they have put you in that situation. I’ve had lumpectomy, lymph node clearance (it was in one) and I’m hormone sensitive. I have been told that I will have chemo, radio and tamoxifen. I am 42. Maybe you can try asking them what they recommend or what they would do in your situation?

Julia xx

Hi Gremlin
like you, had to make the decision about chemo - MX and SNB, HER2 neg and hormone positive, I’ve had rads but chose not to have chemo.
Two reasons, would have delayed my going back to work - that’s planned for new year, and the amount of benifit (reoccurance wise) was minimal, about 2%.
That was enough for me, if you decide not to go for chemo, you can always change your mind at a later date.
Good luck
Julia

I had to make the decision too - there are quite a lot of people for whom chemotherapy has borderline benefits (especially if we’re hormone sensitive). It’s a very personal decision, but the single most helpful thing for me was asking the oncologist if I could think about it for a couple of months. She readily agreed and this meant that I could really think through the consequences of both paths and mull things over. My oncologist suggested having several meetings with her until I was happy with my decision.

hi not sure i give you much help but know where your comming from, i was diagnosed on 8th october had all my scans and having op on 17th november. still waiting to find out if its anywhere else… i to was told that my cancer is hormone sensitive so will need hormone therapy and radiotherapy dont think i will be needing chemo but who knows? i hope you can come to a decision that you are happy with and that is right for you thought are with you x.

Hi all, thank you so much to everyone that replied. It was great to have your support.
I made the decision to have the chemo, and have had my 1st session.

Thanks again, Jo xxx

Hi Jo

I was an automatic chemo, but I would have chosen chemo in your situation, and I’ll do it again if I get a recurrence. It’s do-able and it’s a safety net. Best of luck that it’s easy on you!

Carole
x

Hello gremlin.

I haven’t been in your position but here it is what I think:

You need to find out why they want to give you chemotherapy. Chemotherapy is usually administrated when there is a suspicion that the cancer could spread to other areas via lymp nodes or bloode vessels. I think it would be good if you can have the extention test to know if the cancer has spread to other areas. Cancer does not always spread through the lymp nodes, it can also spread throug the bloode vessels. If I were in your situation I will ask for this test even if you don’t have any symptoms.

Hi
I have been recommended to have chemo mainly due to having a grade 3 cancer ie aggresive. I am also having rads and herceptin as HER+. Do you know what grade yours was?
MaggieM

Hi Maggie, mine was grade 1. The chemo itself wasn’t as bad as I thought. You get used to the nausia, but it does leave you really tired. My biggest fear was the hair loss, which is just starting now, but I love my wig. It’s totally different from my normal hair style, and it does make me feel like a different me.

Good luck with your treatment.

Jo x