I’m getting worried that the cuts are causing doctors to re-evaluate my treatment, and find ways to withdraw it. Is this just me being paranoid, or is this happening to others?
Started off with them saying I should now get things like Co-codamol, Gabapenitn, Omeprazole, eye drops etc from GP. Then they said that they would routinely do echo cardiograms every fifth session of Herceptin to make sure my heart is OK - and if there was any change they would stop Herceptin. More recently, I have been referred for an operation to sort out an ongoing seroma. The operation will invlve taking tissue from my tummy to fill the cavity where my breast was. I have been having my seroma drained for three years, and suddenly the doctor announced yesterday that they would send the fluid for analysis to ensure that there was no cancer cells present. If there is they will not do the operation, because it would provide tissue for the cancer cells to grow into. If they are concerned there may be cancer cells present, why didn’t they test the fluid beofre now (they have had three years). Just get the feeling they are looking for excuses to refuse treatment. Anyone else feel like this?
Just replying to myself so the post actually appears.
Hi Lemongrove - afraid i can’t be of much help but I’ve always had to get whatever medication I need from my GP - my consultant did tell me I could take co codomol so i went out and bought some x
I’m not enamoured with the NHS after losing both my mum and dad and seeing the treatment they received, but I just hope you’ll keep on top of it and not let them get away with anything ! X
Sorry your seroma is still causing you so many problems,sounds a bit rubbish to me they have delayed enough I would think.Re meds I have always got them from gp and he it never seems to be a problem,only thing he said last time was that it is cheaper for me to take 2x300mg gabapentin than a 600mg tablet-actually suits me as I can adjust the dosage.
On a good note I was told that people having zometa may be able to have it at home if they are having herceptin(query re portocath patients)-they are currently costing it for the Worthing group of hospitals.Think it may again come down to postcode lottery.
take care
L xx
Another who gets all meds from GP - I actually find it easier that way.
Must admit I was worried about cut effects until yesterday when I got my bone scan results whicvh showed the Cap is holding me stable. I wasa going to ask about Faslodex, which I know is no longer NICE approved, and push the case that in Scotland we are not ruled by NICe but by our own drugs board - but I don’t think I’d have got far.
Hi Lesley,
It all sounds genuine to me. I too get all my meds from GP. When the hospital first put me on any meds I get them from the hospital but after that it is from the GP. Regarding your Seroma - I wonder if it is because of your recent secondaries they are questioning the possibility of cells in the seroma fluid and that sounds normal procedure. I would go on trusting them a bit longer.
Dawn
xx
edit: I have certainly noticed with my own GP that there will be a ‘battle’ to get drugs the hospital prescribe if they are expensive! She tells me the PCT put pressure on them!
Thank you all for reassuring me about the prescibing issue. It just felt like all of a sudden doctors at the hospital were trying to shift responsibility for prescribing to the GP, when prescribing was never an issue before. I do know there is pressure though, because he Prof said they were being pressured to get GP’s to prescribe. Honestly wouldn’t it be nice to go back to the days when the NHS was truly a national service with one budget, rather than competing Trusts, with separate budgets. In those days, when patients required medicine or treatment they just got it - but I’m just a silly old fashioned lefty so what do I know?
Dawn, with regard to the Princess Royal taking a sample of the seroma fluid, the progression I had was months ago. In fact the PR did an operation back in August, to try and sort the seroma out, and that was after the progression. If they thought there was a possibility of cancer cells then, why didn’t they take a sample prior to that Op? Consequently, I do remain a bit wary about why they are testing the fluid now. My worry is that they have been bulldozed into doing an expensive Op by the Prof at Charig Cross (because he favours it), and they might be looking for reasons not to do it. One thing is for sure, if the Princess Roya say there are cells presejt, I will be asking the Prof at, to do another test to confirm it.
Hi Lemongrove cuts are certainly affecting treatment here in the south west. Oncologists are only seeing cancer patients undertaking chemotherapy every 6 weeks not every 3 weeks. Apparently there is a postcode lottery around GSF I was told you could only receive this drug to stimulate bone marrow if chemotherapy was for curative intent. Poor us with metastatic disease again the cinderellas of breast cancer. Would also like some advice re SIRT I believe it is funded by our health authority but this will be changing in April so would like to discuss this. Have just changed oncologists as have issues with treatment and errors. I too am a lefty who believes we once had an NHS to be proud of. If I won the lottery I would have private treatment with an oncologist who has time to listen to the patient and treat them as an individual. Moan over have been very depressed since Thursday need to be back to my normal optimistic self to enable me to continue my fight against this disease.
Kind Regards