I went to surgery to remove a large ovarian and a mesenteric cyst and when I came out I was told I had a rare type of tumor called Pseudo Myxoma Peritonei. surgeons removed my uterus, ovaries, appedix , omentum and lots of abdominal fluid. My gyno (who was told at the time the tumor was benign) put me on HRT. my oncologist (GI tract specialist) later told me it was borderline tumor. I will need chemo in 4 months and Im now worried that HRT might not be a good idea. does anyone know anything about this disease?
I had a mucinous borderline tumor removed in August 06 and any mucinous tumor is suspicious for PMP. It actually arrises from the GI tract, not ovaries and that is why they remove the appendix. Since it is not ovarian cancer, the HRT should not affect it , but I am not 100% sure.
Google it up, but be careful, because there is some scary information regarding this disease.
Good luck and you are in my prayers. Sorry about the dx.
Thank you for your kindness. I did google it up but specialists dont even agree on their definition of the term. Did you have to undergo interperitonial chemo? I'm told this is what I must do in 4 months and it is a major procedure (again!) I wanted to talk to people who have had it and understand what side effects I should expect and recovery period etc. If you've been through it I'd appreciate your input
Hi Amani, since I did not have PMP, only a borderline ovarian tumor, I did not require any chemo or further treatment. A few on this site have had IP chemo and can probably answer your questions as to the procedure, but I am not that familiar. You may want to make a seperate post regading IP chemo as well, to specific responses about this.
I had ip chemo last year . They place a port in chest and abdomen. I had taxol day 1 in port, cisplatin day 2 in abdomen and taxol day 8 in abdomen.The cisplatin made me reaaly nauseated, and I started having home health give me nausea meds and fluid drips at home the day after.That helped. I have seen posts on here where it did not bother other people as much, everyone is different with chemo tolerences. good luck, speedy recovery! donna
There was another woman on here who had this - Orangefuzzball was her computer name. I hope she comes on here and sees this as she knows quite a bit about this disease. Her real name is Lisa...if anyone knows how to get a hold of her, please do!
Hi Tybear - I come to the sites daily but don't post often unless it's about PMP.
I was diagnosed with PMP in October 2006 after having been previously suspected OVCA 3-4. My first and most important question is is your surgeon a specialist in PMP and intraperitoneal heated chemo (given during surgery)? - seeing a specialist surgeon is more important with this disease than cysts seeing a gynae-onc (and that's vital enough!)
I don't know how much you've read - it looks pretty scary when you first have a look, but it's do-able - I'm back at work on Monday after my last op in October.
Have you looked at the Belly Button Club site? I don't tend to go there an awful lot as it can be a bit scary at times - although that hasn't been my experience with the disease, it's not pleasant but no type of cancer is!!! There is also the Christie's Hospital site (the hospital I'm treated at) that has a pleasant and more easy going forum, and there is the best information I've seen on the disease on the information part of the site. PMP Awareness site also has a list of most of the specialists worldwide, plus lots of info.
Let me know what you want to know and I'll answer what I can (most PMP'ers know a lot as no one else ever does, you'll find that out if you haven't already!)
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!
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.
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,
I just got my results back . pathology report confirmed DPAM & primary tumor does not appear to be ovarian. I'm pleased for both. Im scheduelled to have cytoreduction with IP july 1st. and still waiting on the verdict regarding systemic chemo and HRT.
Im in this wierd position where Im not officially Sigarbaker's patient yet, but no one in my contry seems to want to have anything to do with me. No one knows how to proceed with anything. I'm having bouts of hypoglacemia and I dont know what kindof doctor I should go to. have you had that after your first debulking? I found it in medical literature as a possible side effect but dont have any idea why it happens and how to overcome it.
I'm so glad you've got your results - I still get very emotional when I think about the moment I found out it was PMP, it was such a relief because if it had been OVCA it would have been so advanced. Where abouts do you live?
The surgery and HIPEC isn't a walk in the park, but it's do-able and outcomes, on the whole, very good - and you've got the PMP king! Apart from my stoma (which is only about 20% chance, and only 20% of those are permanent) and a huge amount of scars, I'm so much better than before diagnosis. To put it in perspective, 4.5 months out of 30 hours surgery in 14 months, I'm back to work full-time (50+ hours this week!) A couple of weeks ago I would have doubted I could have done that! 4 months post-op seems to be the big turning point. I have my first post-op scan next Thursday, fingers-crossed!
I think I've found the waiting time for surgery the worst part of all. July might seem ages off now but it'll be with you before you know it! Keep bearing in mind that the surgeons grade patients for urgency and if they think it's okay for you to wait a few months, it almost without a doubt is. A friend gave me a book, 'Love, Medicine and Miracles' by Dr Bernie Siegel, it helped me enormously and although I felt very positive from the start it really did move everything up a notch. I'd issue everyone with a cancer diagnosis a copy!
I had numerous symptoms prior to my first op, a lot cyst and mucin/pressure related and generally felt much better afterwards, most had developed so slowly I only associated and noticed things when they disappeared. I'm not sure if I had hypoglycaemia, but had loads of fainting and dizzy episodes, but mainly before my first op, I have come across a few other PMP'ers that have had this too, but like me hadn't really connected it at the time. Between the first 2 ops I had horrendous wind-type pain radiating into my back which lasted for about 3 months continously with no relief. The doctors thought it could be from the deposits on my diaphragm, but were quite vague, but I've not had it since! I get the impression that there's lots of really random symptoms that vary tremendously because the PMP can be in such a variety of places to such different degrees over the entire abdomen, and the numbers of patients is so small that 'classic' symptoms are difficult to pin down.
You're in a strange situation regarding doctors. You've proberbly found out that no one has ever heard of appendix cancer, haven't a clue about the op and you can see their jaws drop as you tell them! I have 2 regular GP's I see and they have been really good and rang my PMP team if they have any doubts or questions, like HRT, odd stomach pains, etc. I once had to see a locum GP who was really young and arrogant, he pretended he knew all about appendix's and said 'so you've had minor surgery'! I feel a lot safer when they admit to know nothing and let you rattle on about mucus and 12hr+ surgeries! They invariably go off and find out more info and never forget you!!! If you can't get in touch with Prof. Sugarbaker yet perhaps your usual doctor could contact his office? My PMP team often sort me out over the phone. I think they have the same problems with all of us and regular doctors not knowing what to do, so are used to having to answer queries from doctors and patients and do their best to help.
Im glad to hear you're back to work and feeling well. I was surprised after my first operation by how fast the body heals itself, given how extensive the surgery was. Im in Kuwait where the only cancer centre is a governmental facility. Not a place one wants to be, regardless of how great some doctors might be.
I had my first (surprise) debulking January 20th. I was fortunate that my surgeon and pathologist knew about PMP and did incomplete debulking but IP is not available here, so I was referred to Sugarbaker in DC. I agree with you, most of my annoying symptoms disappeared after surgery. But I started having what seems to be hypoglycaemia, I had hot flashes, and a strange ache when I take a deep breath or laugh. Im more worried about the first than the other two.
I’m very anxious about systemic chemo because my diaphragm was stripped along with all the remaining organs that had tumour deposits on them. I don’t want to have chemo because, well..its chemo! But I also don’t want to take a chance that this thing will get to my lungs.
The July date was set as the soonest possible date after my first surgery. So I don’t know what to think about the urgency of the surgery. Currently my two big worries about the surgery are resection of colon or bladder that might mean living with an external bag, and parting with my kids for three weeks. They are practically the only two things that will stay with me after the surgery; everything else can be killed with pain killers and meds :-)
Thank you for your positive spirit
I have an ileostomy, it was my biggest worry (apart from them not giving me HIPEC!) Each time I was operated on they drew big black spots on my stomach just in case, but were pretty convinced I wouldn't need one. To be perfectly honest it's no big deal! Not what I would have chosen, but as one of the girls on the stoma site says, better alive with a bag than dead with a bum! It takes a few weeks to get used to but once I got my confidence I had no real problems, life is much the same, same clothes (but bigger knickers!), same food, and it takes 5 minutes longer to get ready in the morning. Anyway, the chances of having one are permenently are small, about 4% overall. I'm quite worried about the after effects of a reversal, if I can have one, as they did take most of my colon and I've read some horrible accounts of situations that didn't go so smoothly. I don't think it would upset me too much if I had to keep it, the thought is worse than it is.
I had 6 months between operations, and although it worried me at the time, I really do think that having that time to recover and get everything organised for the next is better. I went back to work full-time 9 weeks after the first operation, which was too early, but I was still noticably improving and feeling better right up to about 6 weeks before the next op. Apparently the swelling inside is horrendous - to the extent they can't differentiate organs - for quite a while after the surgery anyway.
I worry about spread to my lungs too. Having said that it does seem to be quite rare and those on the Bellybutton site who have had it happen have been operated on successfully, and at least once it's diagnosed then any changes should be quickly picked up in scans and blood tests. I've only come across two people who have had bladder problems. One had her bladder damaged in her first operation pre-diagnosis, the other had a very rare mucinous tumour originating in the bladder, he had some of his bladder wall removed but is okay otherwise.
I found the HIPEC didn't seem to make things much worse post-op (or I didn't notice it if did!), systemic chemo is in a different league. My oncologist was considering it between the 2nd and 3rd but decided I didn't need it, which was a relief!
Keep cheerful, it'll all be over and done with before you know it!
Thank you for tolerating all my questions :)
The fact that we're having these conversations about our bodies is still surreal to me. However, talking to you makes all the difference to the level of anxiety that strikes at the oddest of times. I shy away from explaining this to people simply because it sounds like something of a science fiction novel (a bad one I have to say) :))
I hope to meet you in person one day (when this craziness is all over) and we can then have a good lagugh about it and compare ugly scars.
I always think PMP and the treatment sounds like something science-fiction too, or expect it to be one of the weird diseases on 'House'!
I had my CT scan on Thursday, I won't get my results for a couple of weeks though, so I'm keeping my fingers crossed!
I feel almost back to normal, I've been running around like a crazy woman at work! I've just done a run of 7 days, and have another 5 to go, if I can do that I'll definately know I'm back to better than pre-PMP!
LOL I was cheking in to see if you've posted anything about your results and it hit me for the first time that your name is LiSa not LiZa. Im sooooo sorry, this disease is done something to my brain :)
How are you? I still haven't got my scan results - my PMP team manager is on holiday until the 23rd of March, but I've left her an email. Thank your family for their thoughts, they all help! I don't mind Lisa or Liza, I get some weird spelling of my first and last names!
I'm not too worried about the scan, PMP is generally very slow growing and even in the 18 months I've had it I've seen advances in treatment, so there's a bit of a safety net if everything isn't wonderful! I was in contact with a woman in California who was diagnosed and had surgery for OVCA stage 3 about 14 years ago when she was in her early 30's, it was apparently cured. Then 2 years ago she started having problems again, saw her doctor, they did surgery and found it was PMP all along and it had returned. Since then she's had the full cytoreduction and HIPEC is as right as rain again - it gives me a lot of hope that if it does come back it can be sorted out!
I've finished my 12 shifts, was very tired at times but it was more successful than I had imagined it would be! I'm exactly 5 months post op and I actually feel I'm getting physically stong again, my leg and back muscles aren't getting tired and wobbly, I can run up stairs and generally have got back to charging around. My stomach has that tingly, swollen done-to-much feeling though, so I've proberbly done too much lifting. It feels really good, it's taken me by surprise how much I've improved in the past few weeks. Darren has banned me from working this weekend, that's why I've been able to have time to go on the computer!
Going back to work has also highlighted another issue I didn't realise I had. When I was at home I ate small amounts often because of the feeling of fullness from the stomach surface stripping and swelling, I like eating and it was good picking all day! Now I've got something else to think about I've realised I hardly ever feel hungry and forget to eat, I suddenly realise at 10pm that I've not eaten anything since the previous day. I've lost 12lb in 3 weeks! So I'm trying to make sure I eat regularly now, although I could do with loosing some weight and I've I long way to go until I'm a size zero!!!!
Take it easy girl.
I know how exciting it is to see first hand how much one can do after surgery, but if someone has to bann you from working, thenyou've done way too much.
Please listen to your body :)
As for loosing 13 pounds.I totally understand what forgetting to eat means. im one of those people who does not feel hunger, but feel suddenly dizzy because I didnt eat for a long while. But I'm sure you're not allowed to let that happen to you now. I found that having the alarm on my mobile phone set for a 4 hour reminder, and a pack of prepared healty snacks helps with this problem.
New to the forum. My brother just had surgery for peritoneal mesothelioma in Omaha at Creighton University Medical Center. Surgical protocol is virtually identical to PMP. His surgeon is Dr. Jason Foster who also teams with Dr. Loggie. In the short time I've been here in Omaha, I've met several PMP patients who were turned down by Dr. Sugarbaker. One of their comments was that Dr. Sugarbaker "cherry picks" who he does surgery on so that his statistics are high. We're from Denver, and all the information we got from various meso organizations and oncologists in Denver said, "don't go to Sugarbaker". So if you're worried at all about waiting until July to meet with Dr. Sugarbaker, you may want to call the Loggie/Foster team in Omaha ... they've been absolutely wonderful and timely in working with my brother and their other patients worship them. Good Luck!
i tried to leave youa note but it didnt work.
Im sorry about your brother's diagnosis, I hope he recvers well. I heard the same about Sugarbaker but was told by someone he treated that he turns down those who will not ba able to handle IPHC. I've also read accounts on PMP awareness site that he has accepted some cases who were terminal for palliative surgery. So im not totally convinced it is a matter of statistics. As for my wait, im afraid it is a must since i have had a major surgery in January and they will not be able to open up again until about around three months post op.
Did your brother receive IPHC? do you mind sharing his experience with me?
How are you? I've been busy resting after working too hard! I had my CT results today - my pelvis is clear of residual tumour, the 2 tiny spots (less than 2.5mm between them) on my liver are still there, but haven't grown. I've got an appointment for 28th of April to discuss the scan with my consultant and see whether I can have the ileostomy reversal. I'm a little disappointed the spots are still there but at least they are still the same, and haven't increased in nearly a year.
I think every PMP patient's own surgeon is their hero (quite rightly, they are all exceptional surgeons!) They all have different qualities and it's important to find the one that suits you and your priorities. Prof Sugarbaker is known to be aggressive and to a certain extent 'cherry pick' his patients, personally I wanted aggressive and would find being 'cherry picked' as reassuring! The wait isn't concerning, I know I wouldn't have been ready for further surgery until a minimum of 5 months, the wait is horrid psychologically but physically it's definately needed to give the best start to the big op. I'm 5 months from my last one and I know I've still got a way to go to be 100% again.
Great to hear that pelvis is clear. Sorry about the stubborn spots. let me know what your doctors decide about reversal of ileostomy. Do you have an idea what they will do about the liver spots?
Been spending a lot of time in the hospital with my brother, Bill. He's doing okay but it's just a very tough surgery. Yes.. he had IPHC ... 90 minutes of it. His surgery went like this:
Significant scarring from the mesothelioma throughout the entire abdominal cavity; removed spleen; removed appendix; removed part of pancreas; removed diseased lymph node in pelvic area; removed entire omentum; removed belly-button; blood supplies to colon and stomach had diseased and scarred tissue on the outside of blood supplies ... doctors were able to keep blood supplies but removed the outer diseased areas; lower right bowel completely cobwebbed together in a tight ball like structure from disease and scarring ... doctors ligated all the scarring to straighten out the bowels; scarring and disease on right diaphragm ... doctors ablated all affected tissue; abdominal cavity then infused with heated chemo for 90 minutes; abdominal cavity then irrigated; no significant blood loss; sewn up.
Both my brother and I are from Denver and have been working very closely with Denver EPA and their testing methods for asbestos in tissue samples. I don't know which docs around the US might be using Denver EPA's testing methods ... but the Creighton docs here in Omaha didn't know about them. So I've put the Creighton docs in contact with the Denver EPA docs to exchange info. Creighton is interested to see if PMP patients' tissue samples may reveal traces of asbestos.
So when you have your surgery, be sure to have your tissue samples properly preserved. Denver EPA's testing methods are so precise that they can determine which mine the asbestos came from. It's as if each type of asbestos has its own DNA. By the way, Denver's EPA team was finally called into New York after 9-11 to analyze air and dust contaminents because the New York team didn't know the newest methods. Sadly for New York residents the results were squashed by the White House.
Good luck to you and feel free to email me with any questions.
thank you for your message. I hope your brother is recovering well. Will he be on chemo after surgery?
I'm very interested in knowing more about the environmental aspect of this disease. I'm from kuwait and since the first gulf war the numbers of cancers have quadrupled (in relation to popultion grwoth). Every seriuos attempt to invetigate the link has been shot down at the get go.
I will make sure to have some tissue samples preserved for further testing.
ps. you will find a wealth of information at the belly button club - a yahoo group.
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