SHIT!
Just back from my six month appointment.
On a positive note , the lymph node I was worried about has carried on shrinking.
Bad news is that something is growing where the cancer was. He's not sure what yet and needs to consult with the team, but it looks like I'll have another PET scan and possibly surgery.
Another appointment in three weeks.
Erghhh - sorry to hear your news. It is probably stating the obvious but must be very worrying for you.
Good news regarding the lymph node. Is there any chance the growth where the cancer was could be some of scar tissue? Otherwise hopefully it has been caught very early and can be removed with a minor operation?
Just wanted ted to say I’m thinking of you and all the best x
Thnks for replying Susan. I really have no idea. The doctor wasn't very forthcoming and said he had to wait to consult with the team before they could decide what to do. As you say, very worrying but I guess I just have to get on with it. x
I'm so sorry Sooze. Wish i could say something to make it better. Hopefully the pet scan has the best possible outcome. So frustrating.... hard to think clearly when you are hit with as bomb shell like that. Thinking of you and hoping for the best. Xx
Oh Sooze I'm so sorry to hear that. What an unexpected blow. As Bexter and Susan have said, thinking of you right now and hoping for the best And some positive news. Take care x
Did they say when you are getting your Pet scan? Is the idea that you have the scan and get the results in three weeks? It's so horrible waiting, I feel for you! I smashed an Ikea plastic wastepaper basket into a million pieces when I was waiting for my Pet result. My husband wept bitter tears collecting up the pieces and putting them in its sibling! I feel for you. Good luck!
Karen
Thanks ladies. it really does help to talk to someone who is going through the same stuff x
Having the PET scan first seems logical to me but I have a date for the appointment.. 25th April but no scan appointment yet.
Looking online I am assuming the only operation I can have is the pelvic exenteration ? I had a hysterectome over 12 years ago ( which left the cervix )
I'm a really active person and it seems such a huge operation for such a small area ?
Is there any other treatment as that would be a very last resort for me I think.
I'm not sure sooze but you think there would be a step before if it is not invasive. With me when they thought it had reoccurred, they were thinking hysterectomy if it was only localised. I'm not sure what step would be in between.
I hope someone else can help you out.
Thinking of you xx
Just had a phone call from the oncologist and he is trying to fit in a Pet scan before the appointment on the 25th. He said he had consulted with the team and they agree there is an area of concern... whatever that means !
Total pelvic exenteration is only offered if the tumour hasn't spread outside the pelvis. So I imagine that's what they are looking for with the PET scan. The reason they do such a major operation for a such small area goes right back to.how those organs developed when we were embryos and how they all interconnect. Local surgery is also difficult when you have had RT due to all the damage and scar tissue.
Don't jump the gun and get too worried yet! It's an area of concern, you don't have a definite diagnosis of anything bad.
I had total pelvic exenteration 15 weeks ago. If you want to know more about it you can.message me. In relation to being active I walked 15000 steps today!
Good luck,
Karen x
Thanks Karen. It sounds like you are doing really well. that's a lot of steps ! I'm only up to 12000 today so far but dancing class and out dancing tomorrow night will see me over the 20000 :)
Thank you for the offer of messaging. If they suggest the exenteration I will be taking you up on that and asking loads of questions x
Hi SoozeH. Urghh, that is understandably frustrating and worrying. It's the waiting around for scan results that does my head in at the best of times, so when you get a result that just means you have to have yet another scan to wait around all over again that's just the pits! Knowing what you are dealing with, and exactly what your options are to go about that, is such a key part of this whole journey. I'll be thinking of you. x
I'm being pro-active. Haven't heard when the scan is yet but had a form in the post to get a blood test done before the scan.
I've started a ketogenic diet which is supposed to starve the cancer of glucose which is what it's supposed to feed on.
Adding tumeric, R-ALA and a multivitamin. I'll probably get some high dose vitamin C too.
I've been researching a lot and a friend recommended Aloe Arborescens https://www.cancertutor.com/aloearborescens/
Looks promising .. I can't have the honey on this diet but if keto doesn't work this will be plan B
Hi all. PET scan just done and dusted. Sitting here being radioactive for a few hours now !
As usual they didn't tell me anything so have to wait until Weds 25th for the results and plan of action.
Off in the campervan on Thursday for 4 days for some fun and relaxation to take my mind off it.
Take care Sooze xx
hi
enjoy the campervan good idea to take your mind off things till you know whats what
keep busy
if the results are not what your wanting to hear just to let you know im here if needed
im a reccurrence lady i had the chemo mix and im still stable 18 months after finishing the chemo
if its contained in the pelvis the op will be offered
love michelle xx
Thanks michelle. It's good to know there is an alternative to the op. That would be such a big step and life changer for me. Did you have the option ?
The ironic thing is I actually feel the best I've done since the end of treatment. The pain inside from what the doctor called "radiation changes" has mostly gone. I feel fit and everyone says how well I look
hi
hopefully its just a slight erosion and the pet shows nothing up
i wasn't given the option as mine went to 2 para aortic lymph nodes one on my pelvic wall but the other bugger went near my diaphragm so as that one is outside my pelvis i can not have the op
so the chemo mix was my only option
love michelle xx
Thanks again Michelle . How was the chemo ? How often and what side effects . Sorry to keep asking questions but this will be a massive decision for me.
Hi
the chemo is hard but doable
2 chemo's and one target therapy every 3 weeks it makes you lose your hair
the chemo is a palliative treatment but the operation is massive but with an aim to go over ten years even cure
to be honest if your offered the op I know it's a massive decision but I would take it and then if it did come back a 3rd time you would have the chemo to fall back on
keep your mind busy Hun you need to enjoy your break you could be stressing for nothing
Love Michelle xx
