I found a lump

[aodirjjd]

Sorry you probably get hundreds of these on the board. I’m only 35 and found a breast lump when showering today. I’m shit scared and just really worried that I won’t get seen quickly because the nhs is such a mess right now. I’m going to call gp in morning and beg for an appt.

do all lumps get referred to breast clinic or is there chance doctor will poke it and say it’s not needed ? Are people still actually seen in two weeks if a referral is needed ? I’ve spent all evening googling private breast scans trying to get an idea of costs because I can’t bear the idea of waiting weeks for a referral that is delayed or some other drama like lost test results. Has anyone done this? It seems initial appt is £250 which I could afford but I wasn’t sure how much biopsy’s etc might run too. If I’m seen with nhs do I have to wait ages for any results or can they give me all clear quite quickly from breast clinics?

I’ve got a holiday in 6 week that I’m desperate to go on as well. I know logically this lump is almost definitely nothing and I’m really upset that if I don’t get seen quickly I might struggle to get travel insurance.

@Daisy03 i do! I am about to have my last EC infusion and then I will have the doxy - something for 3 cycles. So I feel I have a good handle of how EC affects me but doxy is a bit of an unknown.

I Woukd definitely take the biophosphonates to protect your bone health .

Im sorry you’ve been abandoned by the breast nurses , that’s disappointing. Have you called the breast clinic to ask what’s going on ? Failing that PALS might be able to help

Im totally with you on the mental health front .. I’m hating feeling so floored after my mastectomy and I’m dreading how I’m going to feel with chemo etc .. but if it helps .. my 75 year old mother has stage 4 lymphoma and is still on immunotherapy . She had chemo 18 months ago and currently feels as fit as before , and walks five miles a day so it’s not a lost cause , it’s just it takes some building back up to .. plus people don’t realise that once treatment is over you are left to pick up the pieces emotionally and physically - it’s not an overnight thing

Probably Docetaxel next. I had Paclitaxel which is from the same drug family. I found that stage of treatment much easier to cope with than EC which knocked me for six, I was in bed for days at a time.

Good luck with it. You're ticking off the treatments and getting through it.

If you need support with asking for a second mastectomy for symmetry reach out to Flat Friends UK. They are a great support group for all aspects of living flat.

How are you doing now @aodirjjd ?

Oh wow it’s been a while sine I posted here!

Docetaxel was another nightmare. Sympton wise I didn’t feel as bad as EC but it was objectively harder on my body and I ended up hospitalised with a fever. It was awful, I should have been discharged much quicker than I was but due to reasons I won’t go into I couldn’t see anyone who would sign me out so I stayed a week and it was traumatic. They wouldn’t even take me off the drip for the first 5 days so I couldn’t shower and ended up with a rash. Maybe I should just be grateful I wasn’t iller but I’ve had nightmares about it. I’ve had a few people tell me I should go to pals but I can’t face being dismissed again.

I finished chemo in December and am now on biiophosphonates and letrozole. They’ve also chucked in abemaciclib. It was hard at first knowing what was chemo hangover and what was new drugs at first but now I’m getting a clearer view. I’m in pain everyday from letrozole with aches in my legs and hands when I wake up or when I’ve sat still for an hour or more . I get lots of stomach pain from abemaciclib. I am crossing all my fingers that this will get better because it’s a fairly miserable life. The abemaciclib dose is still in adjustment phase so less worried about that one. I am able to do some running and resistance exercise. I basically have to or I get much stiffer.

im not even on the waiting list for an appt to discuss second masectomy yet because nhs admin but expecting an appt to discuss “the future” around the anniversary of my diagnosis.

I don’t want recon anymore . I just want to be flat. I feel like I can’t rest easy until that’s done.

so I am not doing well really. I am chugging along and on the outside I probably look like I’m doing ok. But I miss my hair dreadfully . I miss old old body more. I am exhausted by work and I don’t like the role anymore so am looking for different but would be tricky to start new with all these appts for abemaciclib . It also means I am back to regular hospital appts ruling my life and having to regularly argue with admin (mostly unsuccessfully). I am so tired of being in pain with letrozole. My risk for recurrence is quite high so I would be daft not to take it but god I wish i didn’t need to do could actually get my life back.

Hi,
I'm sorry you are going through this. If you are going for a second mastectomy I would talk about wanting symmetry rather than removal for peace of mind as surgeons don't seem to like this. I'm living flat and found it easier once I had the second breast removed. It is quite a postcode lottery for surgeons who will remove a "healthy " breast unfortunately.

Thank you. I’ve read similar on “flat friends” facebook group. I’ve asked the breast cancer nurse if I’m likely to have a fight for it and she said no. I’ve also got a letter from genetics oncologist saying they support a preventative mastectomy so I don’t think I’ll have an argument for it just a mega long waiting list.

Hi @aodirjjd, How are you doing now?

well it’s been a year since I found the lump now and I’d love to say I’m thriving but I’ve had a difficult time.

i developed ulcers in my osephagus which were initially dismissed as nothing serious as I wasn’t in”enough” pain but then I presented at a&e when I physically couldn’t eat anymore. After 12 hours in a&e they said I needed to be admitted to get endoscopy as it’d be weeks if I went outpatient but then that was awful. People not turning up to do forms which delayed endoscopy, having to argue over whether I needed one or two paracetamol (I needed it to eat for gods sake!) and the normal hospital sleep deprivation torture. 3 days later confirmed 4 advanced ulcers in my osephagus . I lost half a stone in a week which I really didn’t have spare.

they told me it was probably caused by medication so stoped bisphosphonates (I’ll have these by iv instead starting next month) and paused abemaciclib. But I was bricking it because they took biopsy’s and someone told me those results would take 7-10 days but when I called 2 weeks later I got passed around phone and spoke to 8 people and couldn’t get the results or the repeat endoscopy booked. My grandma was a non smoker who got osephagus cancer so I kept thinking the worst. Turns out my repeat endoscopy wasn’t booked because the doctor had put on system I was inpatient and they couldn’t find me as id been discharged so it had just got stuck. If I hadn’t rang I think I’d still be waiting for call to book it.

i didn’t think they’d be able to help but rang the BCN for advice and got a different one to normal who couldn’t me on that but whilst I had her I asked where was my end of treatment meeting because I got a letter in jan saying it was soon and it’s now late March and I want to discuss symmetry surgery and she told me that symmetry surgery was nothing to do with them and if I wanted that I needed to sort it out by calling the surgeon myself!

well I snapped at this point and emailed pals. Which got me my biopsy results (no mention of cancer thank god!) and got me my end of treatment appt with BCN which I still don’t know if that’ll put me on path to discuss symmetry surgery but I’ll tick the box and ask then. I’ve also complained to pals about a few admin bits I’m still waiting on responses for.

today is a repeat endoscopy to see if my ulcers have healed. I think they haven’t but that they are much better so think I’ll get discharged with a note saying not fully healed but right direction. So fingers crossed there. Plan is for me to go back on abemaciclib on Friday.

oh and I also found out that there was an error on my initial treatment plan, they said I was due yearly mammograms for 5 years which I asked BCN about because I assumed I’d need MRis but she said the letter was right. luckily an oncologist mentioned in conversation it should be MRIs and I mentioned my letter said mammograms and asked for it to be changed on letter not just system. Turns out not only should I have MRIs I should have them for 14 years not 5. So that’s a huge amount of screening I could have missed.

But in good news- I got a new job! Same dept so not to much change but different manager thank god. Start in a few more weeks.

so I’m still pretty miserable. I’m less achy off the bisphosphonates at least but still struggling with trying to exercise whilst on letrozole and generally feeling stiff and rundown despite being off abemaciclib for a month.

I really miss my old body.