Thank you for the info . The surgeons who conducted my debulking surgery were a GI oncologist and a GYNO. They found out it was PMP only after they had made the incision! I will travel to the Sugarbaker clinic in DC for IP chemo. when I called i was told I had to wait it out till june and they may recommend systemic chemo until then. from what I read, and what i was told at the clinic, i must have another major operation for another round of cytoreduction and then do the IP chemo. I wanted to know more on IP chemo from a patient's perspective, what to expect, how long does it take, hospital stay pain management etc. since im not residing in the US I need to make arrangements for my kids and need to know how much I will be able to do and how much help i will need to "keep it together".
Thank you again,
I'm so glad that you're under one of the specialists, there are a lot of scary tales of people trusting general surgeons.
Firstly the HIPEC. I had to have my main cytoreduction in 2 parts - a 13 hour and a 9 hour - in the UK they do the really big surgeries in 2 parts to reduce the complications of anaethasia (sp). I had HIPEC during my first op which was to strip the top half of my abdomen. Before my second op they said they wouldn't do HIPEC afterwards as it was too dangerous twice within six months - I cried and balled alot! They did in fact do it as the operation went so well - apparently my surgeons who are usually very reserved were on complete highs after the op it went so well. I have got 2 small spots on my liver which are too dangerous to remove surgically but it's hoped the HIPEC will have got them this last time. I haven't had systemic chemo. In the UK they don't do the 5 days of IP chemo immediately after the op, just the HIPEC during - apparently there is a lot of disagreement on whether it is effective and it is also traumatic to the organs, I think the jury's still out on that one.
As to how the HIPEC affected me post-op. I was diagnosed during a previous op at Christie's Hospital when I was suspected advanced OVCA and luckily the PMP team were able to have a look and advice my gynae onc. I had a 5 hour op ( Aug 2006) to remove ovaries, 24cm cyst, muccin, appendix, omentum and partial stripping of diaphragm and colon. I recovered well, back to work full-time in 9 weeks.
The second op was 13 hours (April 2007), stripped diaphragm, liver, small bowel and stomach surfaces. Removed spleen, gall bladder, small bowel resection, remaining omentum, mesentary and all peritoneal linings and HIPEC. Obviously it was a much bigger op, I was in ICU for 7 days and 17 days in hospital. During the 2nd week post-op I had more hair than normal fall out, only noticible to me when brushing hair. I was on a lot of painkillers for most of my time in hospital so I presume it is painful early on, but I didn't notice!
I don't feel that I recovered any slower after the 2nd op than the initial one when comparing the amount of surgery, I was virtually fully functional at about 3.5 months. I was able to do light housework as soon as I got home, I haven't done any lifting after my ops until about 3-4 months mark. My partner has stayed off work to look after me for 2 weeks after each op, which was nice but 1 week would have been sufficient - but I don't have children!!! I drove at about 5-6 weeks post-op, when I felt I could basically. I tailed off painkillers completely within about 1-2 weeks of getting home.
The third surgery (hysterectomy, large bowel resection, ileostomy, pelvis completely stripped) and HIPEC has been a lot harder, I'll be 3.5 months when I return to work part-time and I feel a bit apprehensive about doing so, but I need some money!
All in all I'm doing well and would anticipate that by the 6 months post-op point I'll be about 85% back to normal - would have been quicker if I didn't have the 3rd op. I had to have a lot of work done on my diaphragm - it was done by the regional heart-lung transplant team because of the huge risks involved - it has left me slightly breathless on exertion but that's improving. Having the 3 ops one after each other has left me with a lot of muscle wasting and I do get very tired walking - it's the 3rd one that's caused the problems I was a lot better after the 2nd. I've not really had any physical problems due to lack of organs, I'm actually surprised how you can feel well without so many of them! It's been mainly general recovery from surgery. I felt apprehensive going in for my first 'big' op but didn't for my 3rd as it wasn't as bad as I expected!
I have a Caring Bridge site, type in lisaconnolly in the search box or look on PMP Awareness site under 'our stories', it might give you an idea on how things progressed afterwards.
Hope my post isn't too long, I can't stop yakking once I start!
Oh I forgot about HRT.
I suffered dreadfully when I had my ovaries out and had to wait until the histology was back to say definately not OVCA until I could start on it. As with all things PMP there isn't much research to back up facts. Some surgeons say no probs with it, other say avoid. I did do a lot of searching to try to find something to say either way, but there is absolutely nothing conclusive. My specialists say take it, so I have, I'd have been a mental and physical wreck if I had carried on without sleep and in a constant hot do. I take Estradot, which is bio-identical, I think it's Vivelle Dot in the US - Mary53 on here is very good with HRT and has many posts on bio-identicals.
Im sorry for not posting earlier. Thank you so much for your post. I really think it is calming to know what to expect. in the last few days I've been having a very hard time with labs and doctors around the globe. My diagnosis has been contested by three different labs. they cannot decide which is the primary tumour and one lab is contesting PMP altogether. Im now waiting for the final word from a lab at John's Hopkins. Apparently they have to rule out the possibility of a very rare type of mucinous ovarian tumor. I stopped HRT immediatly and will have to wait it out for the next 10 days.
I'll check out the site you mentioned in your post, im sure it will be of great help too.
Wish you an uneventful recovery
Your week sounds very stressful, I hope they can give you the better answer of the two (I don't know the implications of the ovarian so don't know what to hope for for you.) If you continue having problems with the histology then it might be worth posting on Belly Buttons Club, many of the posters are very knowledgable regarding US specialists and hospitals that have experience treating/diagnosing.(It's called belly button's because part of the op is removing the belly button as PMP thrives on scar tissue and it's made of embryonic scar tissue)
Please let me know how you get on, I'll be sending you good thoughts,
Thank you for your compassion and your positive energy :)
I will keep you posted.
the PMP awareness site was of great help