Breast Cancer Now Forum

That's the thing.  Everytime I think I'm gonna stop I hear of someone with mets.  My school friend got breast cancer before me & didn't take anything & got a tumour (mets) on the inside of her skull, had it removed but has taken 2 yrs to get her balance back.  Is now on Tamoxifen but set off bleeding of the womb, but they've decided to keep her on it.  Cure or complaint - as they say. ... View more

Hi hearty, Just wondered if you stopped.  I was diagnosed Aug 13 & 8/8+ve started letrozole Apr 14 because of aching joints & stiffness moved onto anastrozole Apr 15 aching not as bad but my flushes & general feeling unwell continue, hence why I'm on here now.  Also my bone density was above average before I started & 2 yrs on I was shocked when my surgeon wrote to me to say I had osteopenia of the spine.  Such a difference in 2 yrs!  I have thought many times of stopping & wondered if anyone had. ... View more

🙂 I thought exactly the same. Had they thrown it away as my HER+ results took ages coming from Newcastle as opposed to my local hospital & then waiting for appts etc. My onc said they never throw them away they are frozen somewhere. Must have loads of bits of people 🙂 They shave bits off it & expect they've sent the remains back. ... View more

Gosh you've had it bad. I only needed the one op for clear margins. I had a friend who had chemo at the same age as yourself & it is the one regret she has not having a family - same age as me now mid 50s. So think you're making right decision. My onc also said 'I don't recommend anything'. Not helpful as they're the experts but don't think they want to be sued. The cost was expected at £2.5K but I think it was £2400 something & they gave a bit of discount but don't know what the instalments would be. You could always phone/email them to find out. Private company so very helpful and pleasant. ... View more

I paid for the test which I think is worth every penny.  You don't want to go through chemo if you don't have to & the benefit of chemo isn't great, about 3% benefit in my case.  There are certain criteria you need to fulfill.  Your tumour needs to have been invasive & oestrogen receptor positive (ER+), lymph node negative (LN−) and human epidermal growth factor receptor 2 negative (HER2−), early breast cancer.  This is the company which does it: http://www.genomichealth.com/en-US/OncotypeDX.aspx#.U9PBvvldUpg   It is funding dependent on each NHS trust.  They offer 'freebies' to oncologists.  Ask your onc if they've any left or if they haven't had any ask them to ask.  The hospital arrange everything & send your tumour to the US.  Fairly quick results, under 2 wks in my case. They don't invoice you till a few weeks after & when we phoned up to pay (was in Switzerland finance dept) they offered us instalments but gave us discount when said we'd pay in one go (by credit card).  My onc made me make my mind up beforehand as to what I would do with the outcome.  He is a cancer survivor himself & didn't recommend chemo but did offer it.  I decided I would only have chemo if my result came back in the 'high' (low, intermediate & high categories) risk of recurrance.  It came back just into the intermediate.  So I didn't have it.  My mind was put at rest by this rather than wondering 'what if'.  Reading on this forum someone else with a lower score than mine chose to have chemo.  You need to make up your mind first & be happy with your decision.  No good paying for the test & then going ahead with chemo anyway.  I was diagnosed this time last yr.  I had op & radiotherapy.  My tumour was early but the most invasive & the most oestrogen +.  As well as all the check ups I've just had my first mammogram & result is satisfactory (assume that means clear of cancer at mo).  I have suffered from everything inc 2 lots of shingles after radiotherapy but I am a carer for my mother who has dementia so think this has troubled me more on top of radiotherapy.  Would not have liked to have gone through chemo too.  Hope this helps. ... View more

I too do the 5:2 diet & lost one & half stones over a year, but I've been so poorly after rads, every virus going, I've abandoned it off & on but maintained.  Hoping to get back to it proper next week, to lose final half stone, but I started Letrozole today so hope I don't put weight on, which I did due to menopause I think. ... View more

I was diagnosed in August & had WLE grade 3 invasive tumour lymph node clear ER+.  I paid for the oncotypeDX test as although NICE had approved it for NHS use it will take a long time for each NHS trust to approve its use & work out all the finances as our hospital gets paid by GP trust for chemo so hospital aren't bothered about chemo cost etc., etc., so a lot of financial wrangling before it starts to be available on NHS.  My onc very against chemo.  It's a poison with very little benefit.  I decided I would only have chemo if my result came back that I was high risk of recurrence.  It came back just into the intermediate risk range so didn't have chemo.  To me it was worth every penny.  I finished rads end of Nov.  That did feel like I was a bit of meat.  Very impersonal & often male operatives.  Rads works for up to 6 months.  I'm still tender now.  Also it hit my immune system so I got flu for 3 weeks over Christmas & New Year, then recently had another virus for 4 weeks.  I've had blood tests & bone density tests so due this Wed for another onc appt to discuss hormone therapy.  It's a long slog ladies.  I don't get much confidence from my 3 monthly physical checks because they couldn't feel the lump originally after I went to my GP, only showed up on mammogram.  I'll only be happy once I've had my first mammogram after a year. ... View more

I think an aspiration is taking fluid from a cyst, as you've had done & a biopsy, which I had, nips a bit of flesh out of the area or tumour concerned. It doesn't hurt, it is quick. They give you a needle anesthetic & I had 3 biopsies taken. The first two didn't hurt, I felt the third as I think it was a bit further away from the anesthetised area but it was really quick. ... View more

This is very interesting & helpful. I finished rads a week ago so will bear this in mind. ... View more

I suggest you phone your breast care nurse.  They are the experts and they see loads & that is what they are there for so no need to feel you 'are bothering them'. ... View more

So sorry to hear of your predicament & it's not a moan.  As a landlord myself (1 house only) we are not allowed DSS as it is a condition of the mortgage/insurance, goodness knows why but we're not allowed so don't think it is landlords being snobby.  As suggested go down the sheltered housing route via housing associations.  See this link on your rights https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/11894/138304.pdf I'll send you a private message too. ... View more

Hi Pink Lady, Saturday, day after finishing I felt dreadful on the morning. I have felt this off & on seems to come in waves. Think it's the fatigue feels like exhaustion feel sickly with it. I hadn't felt it for a couple of days but had it again today before tea time but I have had my 1yr grandson all day & my mother who has dementia to the hairdressers. It seems to come on when I need to drink/have food/sleep & after food when my body doesn't seem able to do digestion as well as repair. Some people here have said it hits 10-14 days after finishing. Also rads staff told me on last day I hadn't felt full force yet & to carry on for a couple of weeks as if I'm still having it. ... View more