Hello.
I was diagnosed with grade 3 breast cancer in October 2024 (HER2 negative, PR negative, ER positive). Had mastectomy in November including sentinel lymph node biopsy. 1 out of 3 were cancerous. Not seen on MRI, CT or ultrasound. So had axillary clearance Jan which revealed no cancer in main lymph nodes.
Consultant and breast care nurse were positive and said, this is a very good cancer, not sure if you need chemo, margins were good, all cancer removed. Only tiny spot of cancer in one sentinel node it did its job in preventing it spreading to the main lymph nodes they said.
I never had a lump or any symptoms at all was just cancerous cells all over breast picked up whilst diagnosing a fibroadenoma so you can imagine my shock.
First appointment with Oncologist last week she said it has a high recurrence rate of 12% (oncotype was 26). I am 41 and pre-menopausal.
She has recommended 12 sessions of chemotherapy which is frightening. Taxol and carboplatin every week for 9 weeks followed by Epirubicin and cyclophosphamide once every 3 weeks 3 sessions.
Also, I am BRCA2 positive hence the carboplatin being recommended.
I suffer with extreme health anxiety and always read into things/get paranoid when I’m speaking with doctors that something sinister is going on. My biggest fear in life is getting cancer and having chemotherapy and being ill/losing my hair etc so you can imagine this has been the worst time of my life, feel like running away.
Has anyone had the same type of cancer and/or treatment regimen?
I’ve got a silk bonnet to wear at night time, I’m wondering if that would help in this instance and/or sleeping in plaits?
I’m 42 and was diagnosed a year ago with stage 3 breast cancer. I had a mastectomy and lymph node clearance whilst I was pregnant. Then had 4 rounds of EC and 12 weeks of paclitaxel. I did cold cap and lost 50% of her hair which was all over so not noticeable to strangers. It did start to grow back towards end of paclitaxel. At the end of chemo I lost all my eyebrows and eyelashes which did grow back very quickly. Good luck and hope it also goes well.
Thank you for commenting. I will be trying the cold cap also and have a silk bonnet to protect my hair when sleeping so hope that helps. Just hoping I don’t feel too ill with it all.
Are you ok now then?
I've had chemotherapy twice. The first time I had a lumpectomy then EC chemotherapy, 6x3 weekly sessions. I had no problems at all except it was hard for them to find a vein to put the chemo into. So have a Picc line! I just had tiredness for a day or 2 after each session. I lost all my hair very quickly in the shower after the 2nd session. Get your wig now, so it is ready. I loved my wig! Much better than my own hair, and it was free! I had no problem with radiotherapy and had 5x3 weekly injections of Herceptin before having to stop because it was affecting my heart.
8 years later a lump returned in the same place. I had a mastectomy. It took a long time to heal probably because I had had radiotherapy before. Then I had 12x weekly sessions of paclitaxel. I had a Picc line and it was the best thing ever! Tiredness was much worse than before. I've got neuropathy in my fingers and I've had lots of aches and pains. The last 3 sessions I was so, so weak, but it was doable, and I am 74 years old! I used the cold cap which was fine, but my hair has become thinner, so I've got another lovely free wig that I wear when I go out. I am now having to have 18 herceptin injections so I hope they don't affect my heart this time! 5 weeks after chemo ended I am unsteady on my feet so I walk with a stick. I still have some neuropathy and aches and pains, but I am improving every day. I can now walk 3 miles!
None of this was as bad as I expected it to be and there is help at the end of a phone night and day. Good luck and best wishes.
P. S. Do have a Picc line! xxx
Hi Sparkle498uk I’m 40 & I finished chemo in January, 4 x rounds of taxol followed by 4 x rounds of EC. I’m not going to lie & say it’s been the best time of my life but chemo is do-able. Are you lobular type cancer if no lump? (Mine wasn’t mine was IDC). I cold capped and kept the hair on my head but lots of it snapped & it looked awful so I had to get it cut into a crop once chemo finished (whilst it got very thin I was never bald). I got my eyebrows microbladed before treatment, this also fell out because I got really dry skin on my brows but it looked okay for a while and I’d recommend it if you can afford it. Just wanted to say I’ve been where you are and it will be okay.
Thank you for taking the time to respond. It’s hard to see light at the end of the tunnel when you are starting.
Yes I already have my eyebrows microbladed but they don’t worry me too much as I know I can pencil them in etc.
Hi. Just checking in to see how you are and if you got your oncotype results back? Hope all is ok x
Aw thank you for checking in ️
I have a date for the 15th for Oncotype results, so still in limbo at the moment.
How are you feeling about everything now? Have you started or got a date for chemo?
That’s good although I know the waiting is hard but we get through it.
Thank you for asking, I am ok. I start weekly chemo on Monday, blood test tomorrow. Just want to get it started now as I don’t like the unknown (not knowing what side effects I might encounter).
Yea I'm the same, the unknown is the worse part.
Can I ask, when you were told Oncotype results did they say you needed to start chemo quickly?
I think I'm on a similar path to you and just trying to work out when I might start mine if required.
Good luck for Monday, once you get that first round done I'm sure you will feel better mentally and hopefully very little side effects.
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