Diagnosed In July Still Waiting to Start Treatment

Welcome. Some of my situation is similar to you. Click my name to read profile. it can be a scary journey, new jargon, mind running away with itself, stress and anxiety levels rise and the waiting game is horrid. but persevere as it means that they will get you better. It sounds like quite an ordeal having all those surgeries but getting clear margins is important. I am also ER/PR 8/8. the scale runs from 1 to 8, 8 being the highest. It does all take time for appointments to get sorted as well as biopsy results. my mental health has taken a nosedive despite having good support from partner and family. feel free to vent/rant or whatever here as there will be others who will be similar to you. good news that sentinel nodes are clear - mine were too so its not spreading around body. I'm nearing end of radiotherapy and am taking tamoxifen for the next 5 years. only 3 months in. good luck, we are here if you need us. keep going ... one day at a time x

Thanks I am not even sure what the ER/PR 8/8 mean only been told its an indicator for what treatments you will have, obviously the HER 2 I am told I will be put on Herceptin which will be given to me with Chemotherapy.  Trying to take one day at a time but its very hard.  Glad you are nearing the end of your Radio, and good luck with everything. x

it means your cancer is oestrogen positive/progesterone positive. the tamoxifen I take (you may have something else as it depends on age and menopause status) is an oestrogen blocker so although the cancer is gone and I've had radiotherapy, it stops my body producing oestrogen and thus preventing any cancer growing back.

I don't google as this can be disastrous with out of date info but the Macmillan site and Breast Cancer Now have some good info. I think the attached link may help. I got my results in a follow up letter prior to radiotherapy and the nurse kindly explained it all:

breastcancernow.org/.../understanding-your-pathology-results-bcc161

Thanks  I will give that a read, yes I try not to google anything if I can help it.  Yes I am through menopause as 58 but have had a coil since my youngest was born 28 years ago, obviously changed every 5 years, 3 years later on, but I have been told that this will have to be removed but I am ok with that as I had an early menopause starting at 42 so I am over that now.  Thanks for support today made me feel a little better and not so anxious. x 

Hi

Mine was very similar to you.  But after three lumpectomy ops I ended up with a mastectomy, which then meant I didn’t need radiotherapy. My cancer was also ER+ and HER2+, grade 2. I had Herceptin every three weeks for a year and had weekly chemo for 12 weeks (Paclitaxel) If you click on my name you will see how my treatment all panned out. I have now been on Tamoxifen for almost 5 years and will be swapping (if all goes to plan , usually it doesn’t!) to Letrozole for 5 years in January. I had an immediate implant with my mastectomy , changed in Dec 2019 to a Diep flap which I have subsequently had a full tattoo of a peony on , and I feel I can , if not completely close the door , at least it is now almost shut….

You will get there ,I would have given anything 5 years ago to have a peek at where I am now, however that is not possible. I have always the ability for the specialists to swap and change treatments is a good thing , as it means we are being given the best possible treatment for us individually.

Good luck

Jo x

Hi 

Your treatment started the day you were diagnosed and then began in earnest with your surgery. 

I found my lump early June, I had a lumpectomy and 3 lymph nodes removed on 2nd August. Lymph needs were clear and I got clear margins. My lump was 35mm.

My cancer is lobular cancer and is HER2, ER and PR positive. I'm seeing an oncologist next Wednesday with chemo (6 rounds EC and PAC) to start 2-3 weeks later. So really your time scale is similar to mine. 14 weeks since I was referred to the Breast Clinic and I'm 6 weeks post lumpectomy.

I know I've got to have Herceptin alongside my chemo, radiotherapy and then tamoxifen afterwards for 5 years.

Im just sick of waiting for the chemo to start. But, if the tumour is gone the chemo is only 'mopping up' and a bit of a safety net. I expect that once I see the oncologist things will move pretty fast.

You could always ring your breast care team. I've found they've been so helpful and reassuring when I ring them.

Lou x

Hi  thanks for replying.  Yes I hope that I get good results and them margins are clear this time.  However at the same time preparing for more bad news! As that is how it seems to go for me.  Trying to be positive and this afternoon I have felt a lot better seeing other peoples stories on here.  I hope you get your Chemo started soon and you get your oncologist appointment.  I have tried the breast care team at my Hospital but to be honest I dont really find them helpful they dont really tell me anything when I ring, anyhow I will just have to try and keep myself busy until the 23rd when I get my results but being at home isolating makes matters worse.  I am all Netflixed out and have read numerous books regarding cancer.  I am just reading Glittering a Turd by Kris Hallenga, what an inspiration she is to us all.  Good Luck .  x