Am curious, is there a general chat thread…? the chemo starter threads are fabulous but do tend to peter out eventually, I wondered if there was a space to check in for those who wanted to keep chatting to those they go to know a bit?
Please direct me, or use this thread for that purpose!!
Reintroducing myself ( forgive any weird words or punctuation, I’m dictating, I will try and correct/edit but if I say broccoli in a weird place I probably didn’t actually say broccoli!) Weird capitalisation is also likely (had to correct that from capitalism haha!)
I was diagnosed with invasive ductal carcinoma last June, after finding a large lump in May. It came a time which was already complicated, with Family illness proceeding this and the tragic death of a sibling. At the time it felt like just one more thing, if that makes sense.
I went through a protracted diagnostic journey because there were a couple of areas that lit up on the scans they needed to check weren’t cancerous before going forward with treatment . I went on Tamoxifen during this time but the tumour still grew. I had surgery to remove it and lymph node clearance in August 2025.
The lump when they removed it was 58 mm , so nearly six centimeters. 14 lymph nodes were removed 13 of them were involved, so it was described as a high disease Burden . Stage 3C, grade two, extra capular spread, LVI positive, though I have forgotten what that means… multiple tumour deposits noted away from the lymph nodes , ER positive, HER 2 low.
Surgery seem to go well and I was grateful to have such a lovely surgeon who was also extremely good at his job. I was nervous about being transferred to the oncology team because I so appreciated the breast care team.
However I do have a very good oncologist and my experience has been largely positive. I started chemotherapy in November I think… four cycles of EC, which I tolerated but was fed up with the nausea, especially as I went on the fast tracked 2 week version, then four cycles of dose attacks all (docetaxel, but am so amused by the dictation I leaving it in). Dosa tackle (docetaxel 
) did a number on me and I ended up being hospitalized five times. I also got C diff four times which had a lot to do with those hospitalisations, but I got to know the oncology staff and nurses in various units and boards and it says a lot that I almost feel nostalgia thinking about it, because they were so very kind.
I started radio for three weeks, fairly straightforward, quite a lot of soreness and itching two weeks after which I know is the peak time for side effects (dictation said saunas and etching which sounds more fun tbh).
The soreness has healed now… I still get some pain in the surgery area and numbness, and I’ve now been put on letrazole for up to 10 years. As soon as I went on letrazole I got carpal tunnel syndrome, but I’m finding ways to manage this and it will be arranging injection . I do have general aches and pains, but I previously had chronic pain before cancer so I have a certain amount of experience in managing this. And this is why I’m dictating! There are plenty times of the day where I can find and it doesn’t bother me but in this heat it flares up and it tends to be worse at night when I wear wrist brace which helps immensely.
I am now 2 weeks into ribociclib (dictation =ribose sick clip ). I seem to be tolerating it . I am getting an occasional stomach issues and increased back pain , but nothing that makes me want to request a dose decrease at this stage. I’m determined to take everything they have . I’m 46 and my survival rate without treatment, or at least the survival rate of those who have the same diagnosis as me, is 26% survival rate after 10 years with just the surgery, all these drugs bump it to 54%.
That all sounds a bit Stark I realise but in general I’m keeping cheerful… my sense of humor has been my MainStay.
I’m naturally cheeky, have a dark sense of humour when necessary, I’m always making silly comments to nurses and doctors, find it oddly comforting being able to cheer up a nurse or a hospital member of staff when they’ve had a difficult day, because they do so much for me.
Currently dealing with other stuff because we were issued with an no fault eviction notice before the renting laws changed , trying to see if we can possibly buy the house we’re living in but trying to deal with all the paperwork and even knowing if it’s possible it’s hard work. We’re working on it day by day and I’m doing my best. If we can’t do it we’ll find somewhere else to rent for a year and regroup we’re outside the Notice Period now but they can’t kick us out and they know we’re interested in buying , we have a survey arrange for next week and a really good solicitor on our side
This is meant my forum use has been a bit erratic and I haven’t really posted for a while so I don’t know where all my friends are haha in terms of threads or topics or whether people naturally stop posting after the big treatments like chemo. I wanted just to make this space for people who want to just check in about anything and everything and keep up friendships that they’ve made.
If there’s already a space where people do this do direct me I don’t want to repeat a thread haha
Love to all you amazing people
Kara aka Lucy
