I just got out of hospital last Tuesday after another EUA, cystoscopy And biopsies.
Since I had my ileostomy inserted end of April to reduce the faecal output through my rectovaginal fistula. I managed to start hyperbaric oxygen therapy and had 21 sessions of a probable 50 sessions but I had been increasingly fatigued and lost full bladder control due to persistant e coli uti despite oral antibiotics and vesicare. I'd been having episodes of vaginal bleeding on /off and thought it was increasing anaemia. So on the 3rd while being reviewed by hyperbaric doctors they discovered my hb was only 89 dropped from 115 two weeks early. I ended up on emergency start of July and they found out that both my ureters were blocked from either radiation damage or recurrence of my cancer. My renal function was down to 5 percent. They inserted bilateral nephrostomy tubes and gradually they improved to normal after 5 days. My large rectovaginal fistula has also extended all in to my bladder.
Then on the 10th I had a large vaginal and rectal bleed. Over a litre despite tranxemic acid infusions every 6 hours and vaginal packing. The next day they told me to think about palliative care options and they were pretty sure my cancer was back and they were unsure if they would be able to control the bleeding. I had 3 units of blood and an iron infusion. They wanted further radiation to control the bleeding but my radiation consultant was nor keen. They sent me for a ct angio and embolised my uterine artery which had a pseudoaneurysm, which slowed the bleeding. Hb still 59 next day . Had a further 2 units transfused. Now sitting 91. Continuing oral tranxemic acid. Then went for a further pet scan a couple days later which showed no further metastatic disease but increased intake consistent with the fistula or localised cancer. Now waiting for biopsy results. If positive, will be palliative and offered chemo maybe as option. If not, they will consider further investigations like MRI and ct nephrostogram and see if the damage in my pelvis can be improved, but very complicated as it involved bowel, vagina, bladder, ureters and surrounding tissues.
For now, just grateful to be back home even with my two new nephrostomies and hoping i manage to slowly get some strength back.
Oh Bexter, it sounds like you have had a horrific time and still need some answers as to what is going on.
I was thinking about you recently and wondering how you were getting on.
I had two nephrostomies when I was first diagnosed as my tumour was blocking my ureters. I know they are liveable with but is there an option of them changing them to stents. It may not be possible with everything else you have going on but stents are very good as you kind of forget you have them.
Im not sure if this is a silly question but would a pelvic exenteration help. I know it’s a huge operation and takes a while to recover but people seem to be able to go back to a reasonable quality of life after it and if there is a worry you have a local reoccurence would that not eliminate that problem and stop things leaking / bleeding where they shouldn’t be.
Im so sorry you have had such a tough time - you are doing so well though with everything that is thrown at you.
Im not sure if you know but my shady bit on the CT scan turned out to be bone cancer on the PET scan so I have joined the other side (that no one wants to join). I haven’t started any treatment yet but am talking to some doctor about trialling a new drug. The plan is it will stop blood flow to tumour etc / stop it growing (fingers crossed).
anyway take care and hope you get your strength back soon x
Oh Bexter, I couldn’t read and not respond. What a shitty time you are having. I hope that the damage can be repaired, even if you have to go to a different hospital. Where abouts are you based? Probably near a city and not far away in the country like me!
I did wonder about the exenteration too. It’s life changing and a long recovery but if it’s hard to replace the damage it may be an option? You can have a quality of life back afterwards - it didn’t stop me!
Oh Susan, Yeah I did hear. I'm so sorry. I have been floating about the site but not sure what to write as have been going backwards and wasn't sure why... just felt awful lethargy , nausea and pain. Didnt want to be a downer on the site. Especially when i didnt know why. The drug trial sounds a little promising. They said after they embolised my uterine artery.... I would get increased necrosis to the area but it stopped the bleed. Hopefully it will cripple the growth and spread. You really deserve some good news.
The gynae onc consultant (there is a team of them ) said he wouldn't consider a pelvic extenuation with Me, if the cancer is back. But if it is all extensive radiation damage.... I'm a very unusual case. My radiation consultant has never seen the ureters block off so quickly on both sides at once. Which is why they thought the cancer is back. If not, they will do lots of scans and see if anything is fixable . They can't get stents in. Blockages too big but they will consider artificial ureters through existing neph tubes if they have a viable bladder. Any surgery now will be increase comfort and quality of life rather than repair. They told me I will not go back to the way i was before the cancer, but honestly didn't really expect to. They will collaborate with colrectal and urology to see if anything is possible to repair. All the damage seems to be in the brachytherapy zone. My rad onc checked all the dosages and they were in the acceptable limits. I still had 3.5cm-4cm of tumor before the brachy. So not having it .... would not have been an option at all. He thinks the size of the tumour to begin with....might have weakened my walls in my pelvis.
I'm not sure if I will get back to hyperbaric, they have concerns as my pelvis continued to breakdown rapidly despite having the hyperbaric....even though you need 30 sessions at least to see some effect. If the cancer was there, it would accelerate the growth. I guess my radiation oncologist will make the decision when he knows the biopsy results.
On a positive, they said when they did the EUA it looks like extensive radiation damage.... but no guarantees. They want the biopsy results for a definitive diagnosis.
At the moment all I really want is time at home to be me, and feel normal, and try and recover and regain some strength. I am so frail at the moment that even showering is a struggle. I'm very lucky though, my family and friends have been great. They have made me smile and laugh even when facing bad news.
Just saw your first message. Think I was typing so slowly I missed it. I'm in Australia.
Finally got some good news today. The two biopsies they took during the EUA came back as radiation damage. They had the tumour board meeting with all the gynae onc big wigs today and discussed my case.
Now they think it's just extensive radiation damage they are considering a Pelvic exenteration but they want a MRI first before they decide anything and they will discuss it with the colorectal and urology teams.
I saw my medical oncologist who is going to keep a close eye on me too. She was going to tag along at the tumour meeting to find out what's happening.
Yeah I do Cara ! I know I'm lucky and I'm counting my blessings. I'm in a much better spot than I was about 2 weeks ago when they thought I'd die and bleed out. Thanks for your kind thoughts.
Thanks Susan. The people here always amaze me. Such big personal health issues and always have time for everyone else. I truly wish you the best with the trial. You deserve some good things to happen to you.
Yeah I do Cara ! I know I'm lucky and I'm counting my blessings. I'm in a much better spot than I was about 2 weeks ago when they thought I'd die and bleed out. Thanks for your kind thoughts.
Thanks Susan. The people here always amaze me. Such big personal health issues and always have time for everyone else. I truly wish you the best with the trial. You deserve some good things to happen to you.
Hi bexter I just read all of what you have been going through and just like to send you big hugs , and wish you all the best for ur follow up treatment,Melissa x x
I have messaged you. What you are going through is awful, I really hope they can operate and clear the radiation damage.
You might like to join the advanced forum. There are several lovely ladies in there who would have some helpful advice for you as they are or have gone through similar situations.
got your message lovely lady. Still waiting for MRI booking. Pet scan shows my bladder has collapsed as well as the fistula. They want the MRI to see extent of damage. I don't know if I'd qualify for advanced...cause even though they can't guarantee its not a recurrence. The scans so far just show extensive radiation damage. Feeling a bit better at home. Slightly stronger. Still weak and anaemic. Think I will take the option of a pelvic exteneration, if they offer it. Just want it all gone as don't want the ongoing bleeding through the fistula as well as everything else that constantly passes through it.
Bexter - apply for advanced - put in the info box that you had chemo rads / severe radiation damage and are facing the possibility of a pelvic extenteration. The advanced group is for people facing this as well as reoccurences.
There are quite a few lovely ladies like sooze who can help you so much with advice on stomas and the op. You are not having an average recovery from chemo rads - you have been through hell and need support.
Please ask to join. Don’t ask don’t get etc! All the best x
Sorry it's been a while. Thinking about you SO much. I can only echo everything that Susan has said, including the bit about the other Forum. It's seriously good advice. X
So pleased to hear your doing ok now, we seem to have been on a very similar path so if you ever want to chat stoma's, radiation damage etc drop me a message. Take care lovely lady xx
! I know I'm lucky and I'm counting my blessings. I'm in a much better spot than I was about 2 weeks ago when they thought I'd die and bleed out. Thanks for your kind thoughts.
