Breast cancer diagnosis after clear scans

[FekkinFedUp]

Name change, but I've been on here for 10 years.

I had blood from my nipple for a year. Two lots of mammograms and ultrasounds over 5 months showed nothing - not a damn thing. So in June I had a total duct excision for symptom relief. What the surgeon found was stage 2-3 invasive breast cancer. I've been sitting here, through the heatwaves, having to wear a bra and dressings 24/7 for a month, with a wound that won't heal due to the cancer. I also had infection and necrosis and lost half my nipple. I've been unable to do anything except sit here in pain and read, crochet and doom scroll - my ADHD is going mental as it wants and needs to do something!

I'm booked in for a mastectomy and sentinel lymph node removal on Monday 27/7, after being injected with radioactive isotopes and dye (apparently I'll be peeing blue for a while lol). After I've healed I'll need an MRI to check if it's gone, and if I also have cancer in my left breast. That will be followed by radiotherapy and possibly chemo.

To top it all off, my car has decided to give up the ghost now, when I need it most. I've been advised NOT to drive it. So how the heck do I get around? Radiotherapy alone will be 5 days a week for up to 7 weeks. No community transport available in my area (rural), and using public transport will involve taking 6 buses a day with a long walk, whilst fatigued and in pain, every day. If they bother showing up. I'll have to go to my GP surgery for wound checks, and no buses go near there. I can't afford a car - I can barely afford food for the kids.

I'm just so fed up, I really am. Instead of concentrating on recovery, I'm worried sick about not having a car. And the kids are taking this hard - I'm so worried about them. They're both neurodiverse and aren't coping well. The ex is also dissing me every chance he gets, telling the kids thing like: Your mum always wanted cancer'. ffs

I'm a strong person, but I'm scared. I'm really scared. I don't want to do this. And if the cancer is also in my left breast I'll have to go through it all again. I don't know how much more I can take. Tempted to just clock out.

Sorry for the long post, I guess I just needed to get this off my chest.

I don't have anything to offer other than a virtual hug. My wife had breast cancer, and had had mammograms that never gave any positive result or reason to think anything was untoward.

It sucks, and it is frightening. Stay away from Dr Google, take each day as it comes, and deal with it as it crops up. Treatments are much more effective than they used to be. It is easy to focus on the ones that didn't go well as opposed to the many that do.

Keep hydrated and nourished, even though you may not feel like it at times.

It is a club that none of us want to be members of, but many of us are.

Contact you breast cancer cns nurse at the hospital or contact the radio therapy team about you needing hospital transport. It's worth contacting Macmillan you can sign post for financial support. Contact your gp, explain that you cannot travel as you have no car. A district nurse can visit hopefully.

I keep getting told off for not eating, but I have no appetite and don't want to eat. I try and eat at least once a day though.

Contact the breast unit. I can’t drive due to a medical condition and the NHS sent me a car for free to take me to all my cancer appointments. Surgery, radio, even to go to Maggies for mental health support and a Breast Cancer Now course on coping with breast cancer.

MacMillan grants aren't available in my area. I am applying for PIP. I will qualify for hospital transport, but in my experience it's very unreliable. After my surgery transport was booked for 9am, and they showed up at 14:30. I can't go through that every day, sitting at the hospital in pain for hours on end, day after day 😞.

Also get the WCA50 form, skip all of it except for your name and details on the front and the cancer bit on the back. You don’t need to answer ANY of the questions in the main form,

A breast nurse can fill out & sign it saying you’re under cancer treatment for x years and you will be fast tracked onto UC income support and NICs.

Yes you can. Don’t give up on yourself. Go prepared. Go to the Maggies at the hospital and have a cup of tea, some biscuits and a chat with other cancer patients and the support workers there, transport can pick you up there so waiting is not uncomfortable.

Thanks, yes I have the form in front of me, my consultant surgeon filled it in, and I'll try and get to a post office tomorrow. I also have AuDHD, so this has been fun lol.

What's up with the car?

Gearbox is on the way out, and there's really bad corrosion, the bushes have disintegrated. How they didn't pick this up at MOT a month ago is beyond me! To have it repaired would cost well over £1,000 - the car isn't even worth that.

Yes me too also AuDHD. I was the only adult with the stuffed comfort toy at the hospital.
😆

lol, that's amazing 😀. I got myself a t-shirt that says: Fuck Cancer!, and I shall be wearing it on Monday. It will give my surgeon a chuckle anyway lol. I also crocheted boobie keyrings for my surgeon and breast care nurse. They thought it was hilarious.

I'm a strong person, but I'm scared. I'm really scared.

It is terrifying, so it’s ok to be scared.
Just try to put on a brave face for the kids.
Stage 2/3 is still early stage.

It gets so much easier when you’ve finished the active treatment and are on the endocrine treatment (if it’s hormone receptive).

Amazing, my comfort toy was a crocheted fox my AuDHD aunt sent me when she heard I’d been diagnosed. She is mini size and good company.

I'm trying to be strong for them, but I have the occasional breakdown. It just hits me every now and then. DCIS (ductal carcinoma in situ) only goes up to level 3 and mine is at level 1, but the invasive cancer is at level 2, level 3 if it's spread to the lymph nodes. There are also polyps - lots of them. I just want to get Monday over and done with.

just a silly photo from the hospital

I've joked that I'll just crochet myself a new boobie lol.

Mine was IDC and the sneaky ILC.
Monday will be here soon. Sending you hugs and strength.

Love that 😁

Gosh, ILC isn't easy to pick up.

Yeah and I have high breast density too,
Bottom line is it was caught in time and most likely was for you as well.
It’s a shadow over your life, but it does get easier. I found a lot of help and compassion on the Reddit breast cancer forum because I find online communication easier than in person plus there’s always someone on there when those nights get long and empty and at 3am you can’t sleep for all the noise in your head.

My head is always noisy because of the AuDHD lol, but now there's added noise. I'm severely sleep deprived. And at the moment the ADHD is hyperfixating on the car situation, so I haven't really looked into cancer support. An avoidance mechanism I suppose. Glad you're in remission x

Sorry you are having a tough time. I was diagnosed with breast cancer after having a small area on my nipple for 10 months, requiring dressings and the GP kept giving creams. When I went to the breast clinic my ultrasound and mammogram was clear, so the consultant nearly didn't do a biopsy. Turns out it was cancer and it showed on an MRI.

I had a lumpectomy and radiotherapy, which finished in March.

I wish you all the best, of you have any questions, ask away.

This has all happened in the space of 6 weeks, so I haven't even been able to process it.

Sorry to hear that. It's amazing how a large tumour doesn't show up on scans. My consultant is very puzzled. I'm glad you got through it. How long did the radiotherapy last, and did you have any side effects?