Im awaiting my treatment plan. It was discussed today but the oncology nurse won't tell me over the phone and has asked me to go in to clinic tomorrow.
To recap -
2a poorly differentiated squamous cell.
Tumour measures 2.4mm/9mm.
MRI - it has a lymph node involvement left side.
PET scan - it has multiple.
All info given over the phone last week.
With this being so I am petrified regarding the treatment.
Will I be given a hysterectomy - then them test to see if it's got my lymph nodes (mri and pet scan say yes) and THEN if so given chemorads?
Or will I be given just chemorads?
Is there a point to putting me through a massive operation to then give me chemorads anyway?
Will I have any say in my treatments?
Will I be able to get a second opinion/trement plan and will it change greatly as I know there's an international plan for stages and treatment.
But will I get a different outcome or better surgery if I go else where? (UK - Essex).
Will I get more options or better surgery if I go private?
1b/2a is a bit of a grey area when it comes to treatment.
I don't like feeling helpless or not in control.
I'm extremely concerned about the shortening of my vagina and the shrinkage if given both. I know it's a pathetic thing to be worried about as it's Cancer. It could if it had the chance to kill me... But after all but it's taking my hormones, it's taking my womb and fertility... It could take my life (but I won't allow that) but what about the state of my vagina?
I was a 1B/2A (moderately differentiated) and can empathise with it feeling like an agonising grey area to be in. I had a lymphadenectomy to check the lymph nodes; histology showed they were negative and so I went on to have a radical hysterectomy. If histology had shown the nodes were positive then I would have gone straight to chemo-radio.
Unfortunately I ended up having chemo-radio as well because the oncologists thought there was significant risk for recurrence. With hindsight I wonder if I would have been better off just having chemo-radio (because I've ended up with troublesome long term side effects from both treatments) or maybe I would have been OK if I'd refused the chemo-radio. Or if I'd had just chemo-radio I think I would have had a higher dose of external radio and more brachys and maybe I wouldn't have coped well with that. What if, what if - I can never know. And really, everyone is a bit different in how our bodies react to or cope with the treatments and doctors are different - whether in the NHS or private sector - ya pays yer money and takes yer choice. Some of the things about going private include knowing who will be doing the operation (if applicable), having more consultation time with a named surgeon/oncologist and a nicer hospital ward/room etc. - but you'd need to study audits (if there are any) to know if private patients ultimately get a better outcome than NHS ones.
I had a lot of the concerns you are currently experiencing. In the end I felt I just didn't know very much and so, rightly or wrongly and despite some uneasy gut feelings, I decided to go along with the advice from the NHS medical team - which I suppose was going with the flow.
You do have a say in treatments because you have a right, of course, to refuse one or more of the treatments. So, in that situation I guess the medical team will offer you a plan B.
