Hi ladies, I’m not sure if this is the right place to post this, but wanted to know if anyone is or has been in the same boat as me and if there is anything I can do about it.
I was diagnosed with invasive lobular breast cancer in May last year at age 42. Because a second lump was found in my affected breast I had a mastectomy on that side. At the time I asked if (because of the type of cancer and family history) if I could have a double mastectomy and recon at the same time. I was told that it was poss but that there was a 3 month wait (I just wanted the cancer out of me) and my consultant suggested that the less invasive surgery I had to recover from prior to chemo, the healthier I would be going into chemo. I was told to start putting the wheels in motion for the second mastectomy and double recon part way through chemo, which I did in October of last year. Chemo finished at the end of Nov and my strength is coming back. However, I have been chasing my reconstruction op (was told it would be January, and I have now breached 18 weeks) and have been hit with the fact that I could be waiting a further 8 months for surgery as it is now not considered ‘life saving’ and more urgent cases take priority, pushing me back down the list.
Up to this point, the NHS have been fantastic but I feel like now active treatment is over, I have been left by the wayside and while I don’t begrudge anyone life saving surgery and agree that they should take priority, my life is now in limbo. My husband has been very supportive but I think it’s starting to get him down too. We can’t make plans ‘just in case’. I had hoped that this would help me draw a line under my treatment and move on with my life, but instead I just feel lost and let down.
Has anyone else gone through this? How did you cope? Was there anything you could do to speed the process? Did anyone get fed up waiting and get the op done privately?
Hi glittergirl, Your post has struck a cord with me as I may well be up against the same thing. I too had lobular cancer in my left breast and because it doesn’t present as a lump -I only went to the gp because when i lifted my arm my nipple shifted position other than that
looked normal…scary as it ended up being a huge 5cms-it was this that made me want a double mx …even when diagnosed I struggled to feel anything different between my breasts. I was told that i would have to have one done first for the same reasons as you, recovery etc…I was told that I would be able to ask for the other mx once treatment was over,but I too wonder now because its no longer classed as urgent how long i’ll have to wait. I am a little way behind you in the way of treatment but it would be good to hear from others with regards how long you have to wait for reconstruction or mx surgery to the other side…wax xxx
IAs far as I know it is very much a postcode lottery. In some areas people seem to get delayed reconstructions and prophylatic mx within months, whereas in other areas the waiting list is 1 to 2 years due to being displaced by immediate reconstructions…
I’m going private to avoid being in limbo for 18 months or however long it would take to have my reconstruction on the nhs. I am fortunate in having taken out private medical insurance a few years ago and can get most of it covered by insurance.
If you don’t have insurance and are in the long waiting list area, it may be worth going abroad for surgery. This is what I would do if I didn’t have insurance. Belgium seems to a good place to go for this sort of surgery, and there is a possibility that you could get some or all of the cost refunded by the nhs under an EU directive - see nhs.uk/NHSEngland/Healthcareabroad/plannedtreatment/Pages/Article56.aspx.
I’ve never tried this myself but if I didn’t have the insurance, I would seriously look into this.