NEED HIPEC ADVICE

[dezysmith]

I've posted before about this but I am now seeking advice. There was a 1.6 cm mass found in my peritoneum in October on my 18 month follow up CT. Had PET scan, inconclusive, told to wait a month to redo the PET and did and it grew .2 cm in 1 month therefore doctors think it is cancer. The uptake both times were mild and they think that's because it is a mucous type cancer. They cannot biopsy it without going in full abdominal surgery. My original surgeon wants to go in and take it out and based on findings systemic chemo. I went for a HIPEC evaluation at Johns Hopkins as that's where I've been receiving my treatment. This doctor has only done 50 of these procedures. She does seem very aggressive. Said she would go in and take it out and biopsy it while I was under ... start exploring ... if found cancer would remove omendum, peritoneum, gallbladder, appendix, spleen, and whatever debaulking necessary and have the HIPEC team ready to treat. She said the hot chemo stays in for 3-4 hours which seems a bit long ... and that the whole procedure would take 14-16 hours. Also the mass is inbetween two small bowel loops and she talked about fistulas and perhaps a bag .... and she also said that I would get systemic chemo after the procedure. She said I would be in ICU for 2 days and then 2 weeks in hospital. Not sure what to do. should I take the wait and see approach or do I just go in like gangbusters? Has anybody had success with HIPEC? I have never had any type of chemo -- I was diagnosed with stage 2A so no chemo was advised at that time. I really appreciate any guidance. This has been going on for too long and I am really about to lose my sanity. I have to admit I am shaken to the bones and am really really scared. Thanks.

[RixInPhx]

This is a heck of turn in your journey, and I understand your concern.
I have no experience with surgery or HIPEC, and no advice to offer.

Giving this thread a 'bump' so maybe others will see and respond.

Best of luck, Rick

[Ashlee H.]

I've PM'd you, but I'll put down a few of my thoughts on the board and bump this up to see if other HIPEC patients can add their comments. A change of .2 doesn't necessarily mean a growth - could just be a different angle during the scan. I think you have told me the uptake was around 1.6, which is very low. When my tumor was active in my omentum, it was showing 6.9, and I do have the mucus kind of tumor. 50 is still a lot of procedures, so I'm sure the surgeon is well qualified. Everything I've read about HIPEC, and from personal experience, the chemo is only going through you for 90 minutes. Maybe she meant from the start to the finish of just the HIPEC procedure is 3-4 hours. My complete Cytroreduction/HIPEC was 6 1/2 hours...and that included one additional hour for the hernia repair. I never had to spent one minute in ICU, and was out of the hospital in 8 days. My personal opinion, having no medical degree, would be to do chemo first and see how the mass reacts. No one knows for certain if it is truly cancer. To go through this extreme of a surgery and not have a cancer would not be fun. However, if you go through a few rounds of chemo and something new develops or you do have growth, then you could go for the HIPEC.
Also, allow yourself to be scared...cancer is scary. No way to sugarcoat it!

[stephh]

Hi - What a situation to be in huh? I am with you...I am finished with chemo as of 9/2, and then I had an exploratory surgery (laparoscopic) on 10/12 where they found a few spots in the peritoneal/omentum area. Reason they did the exploratory surgery was because 1 spot was found during my colon resection-that tested positive. So this was to double check-was not expected,,,but it's a good thing I did it because the cancer is back (or never left). And it did not show up on my scans-prior to the surgery. If they are flat enough and small-they won't show. the biggest spot I have is 1-1/12 cm...and it's flat. I would ask them if they could do a laparoscopic exploratory look in there, to do biopsies. If it's cancer,,,they can set you up for HIPEC, if not, then you are good to go, and did not get too invasive. I am set for HIPEC on 12/19....and I'm scared too. But I've spoke to a couple gals who've had it, and though it's tough,,,it's do-able. And could be well worth it. My surgeon (Mayo Clinic-AZ-Dr. Nabil Wasif), says my particular procedure should only be 4-6 hours and I'd be in an "intermediate"ICU kind of setting-not the real ICU. And in the hosp for 7-10 days depending...and 2-3 months recovery. The 3-4 hour chemo part of HIPEC, sounds too long-you might double check again...I've heard 90 min to 2 hours.
The gals I spoke to that have had this,,,both have recurrence-one of them after 2 years clean-but it's in the liver now (not ab cavity),,,and the other is trying to do HIPEC a 2nd time around. So it's not fullproof,,,but it can be life saving, or prolonging. I don't think you should wait and do systemic chemo in my opinion...I was on folfox since april this year, and it did not prevent this from growing...and from what I hear systemic chemo does not work well in the peritoneal area for some reason-it works best for the rest of the body (lungs/liver, etc)...but has a hard time working the peritoneal area....sucky I know.
I'm with you in this-you're not alone

[dezysmith]

Thanks everyone for the advice so far .... unfortunately I've been told that no laporscopic procedure or biopsy can be done without open abdominal surgery nor will they do chemo without a tissue sample. I have been doing a lot of soul-searching today (and a lot of crying) and have decided to go for a third opinion, this time not at Johns Hopkins, but to see another doctor at Mercy Hospital that specializes in HIPEC. I have to trust that what I'm doing is the right thing. Did everyone feel really good before their diagnosis or recurrence? Did you have any symptoms? Also to Steph it is a shame that BOTH of your friends had a recurrence .... and Ashley too, this does not sound too promising does it? Please anybody else there can you offer any advice?

[stephh]

I would get a 3rd opinion too....I wonder why they don't want to do laparoscopic exploratory surgery...? I know how frustrating it is....I really do. I had no symptoms of peritoneal disease-I feel physically great! I thought I was virtually cancer free...I had the colon resection, and they took that nodule out from the peritoneum during that surgery,,,I followed up with folfox, and thought that would've been enough...but wasn't. I feel like HIPEC is my biggest hope. Not that another mixture of chemo couldn't keep it at bay or even shrink it,,,but from what I hear, systemic chemo is not as effective. I know-it's hard to hear about recurrences....but I kind of expect it,,,but then again, hope for the best. The gal I got in contact with was clean for I want to say 2+ years until this recent recurrence. And my surgeon said 30-40% will not have recurrence, and the remaining 60% or so will. They tell you straight out it's not a cure, but it can cure you...or at the least prolong things. It is a shame that both of them had a recurrence....and it is disheartening, but I feel like I don't have much of a choice. I do know of others where it has spread not only to the peritoneal area, but other organs and they are sustaining on systemic chemo. They seem to do quite well considering. But I don't want to rely on that...I feel like it could grow, and I want to do what I can to get rid of it, and prevent it from coming back...even if it means HIPEC. Yes,,,it might come back,,,but if it helps for a while,,,,,I guess that makes me ok with it. It is hard....believe me, I feel the same dezy. If it is confined to your ab cavity and not in other organs, and it is not in large mass amounts and still quite small,,,,I think it might be worth a shot for HIPEC, but that is something you will obviously have to decide. It's a very personal decision. Before I knew it grew there, the docs always said,,,well if it grows back in the peritoneal cavity, you would/could be a good candidate for HIPEC. I always said to myself, that wouldn't happen,,,and if it did, I don't think I could go through with it,,,,but now that it is here,,,,I feel like I can, and will do it.
I do think you should at least get another opinion if you could-try to see someone soon. I'm sure you will make the right decision for you. Everyone is different. Just know I'm here for you-and there are others who have and are in your same situation, or very similar.

[Ashlee H.]

We found my cancer by accident in doing an ultrasound on my gallbladder. The cancer/tumors have never caused me any discomfort or pain. I feel great now, but know I have cancer in a few lymph nodes. True, the odds are probably low to be cured by HIPEC...but SkiFletch is one of our survivors, and I'm sure others will chime in. Just because the cancer came back doesn't mean it wasn't useful and didn't extend my life. How many cancer cells were killed by doing HIPEC...we will never know. I did three months of FOLFIRI prior to my HIPEC. A month before surgery, the omentum tumor no longer had an uptake. After they were removed, it was discovered the chemo had killed these cells. I was DX as Stage IV, and here I am 2 1/2 years later back at work and feeling good. Heck, how long was the cancer inside of me before we found it - probably at least 5 years. I wouldn't take HIPEC off the table, but I would certainly want to know it was cancer and not just a guess that it probably was. Let's face it...it has been said here before...surgeons love to cut - that is how they make their money. It will be interesting to see the opinion of the next Surgeon you see. There are no right or wrong answers in this game and it's scary.

[Kellie]

I had cytoreduction and hipec performed last December at MD Anderson. At my 6 month post surgery scan they saw a thickening at the anastomosis (where my small intestine was connected to the colon during my resection). There was also a nodule noted  on the scan in the same location as the thickening. I then had a PET scan, which lead to my colonoscopy that showed a mass. I had local recurrent colon cancer, so an open abdominal surgery was scheduled to do another resection. Local recurrent colon cancer would not have been prevented by the Hipec, so I was still hopeful that my abdomen was clear. During the second resection (only 9 months after the Hipec), my doctor found two cancerous noodles in the pelvic region that did not appear on the earlier scan. He removed them and I'm currently on Xeloda. The nodule that was noted on the scan turned out to be nothing. 

I agree with Ashlee. I hate to say that the Hipec failed because I don't know what the doctor would have found during that second surgery, if it would not have been done. As far as I can tell, I'm one of the few on this board that had the "luxury" of another open abdominal surgery so soon after the Hipec. I didn't have to depend on the scans, he got a good look.

I had chemo for 6 months prior to the Hipec because according to the oncologist, if I didn't respond to chemo, he wouldn't want to put me through such an extensive surgery.      

[dezysmith]

Oh my, so if I were to try chemo and it didn't respond that HIPEC is a waste of time? This is just too much to endure and take in ... I almost had my boyfriend take me to Sheppard Pratt Hospital last night (a mental health facility) ... I am really falling apart and have been hysterical. I know I need to be strong and positive and all of that but for some reason I can't at this time. When I take an anti-anxiety pill it help but when the pill wears off I get worse. I wish I knew what to do .... please dear God I pray that you will lead me to the right decision. I want to hear some positive stories about HIPEC ... I google it and there is not much in the way of people posting about good outcomes. Has anybody out here known anybody with a great outcome from it?

[frances]

Hi dezy,

You've been thrown into a situation almost like being diagnosed for the first time. You sound like you are in total shock.

I would want to get open surgery so the docs can eyeball what is going on at the very least. Isn't hipec more experimental?

I hope you can settle on your team soon and find out what is going on. Try to focus on one thing at a time.

Best,
Frances

[frances]

Adds: Hipec is FDA approved for at least a decade, so not classed as experimental. However, it sounds like it goes hand in hand with the so-called cytoreductive surgery. Maybe if you looked at it more as supplemental, it might get it into perspective. If it takes place during surgery, you won't be aware of the procedure. It seems to carry few risks, though the repair of tissue afterwards is an issue - necessitating hospitalization.
frances

[SkiFletch]

Hi again Debby, just wanted to pop back in here after we talked and say a couple more things. We didn't discuss a 3rd opinion, but that's a very good idea IMO especially if the two HIPEC Drs agree with each other. That would give you a bit of direction in where to take this thing. You could at least then say, "yes, I know I'm doing the right thing," and get focused on the treatment itself, which might help the mental struggles thrust upon us by recurrance. You never know as well, you might end up really preferring this 2nd Dr and want to use their services instead. Anyways, good luck with the opinions and decisions, it's not easy at all, and don't be afraid to ask for help, mentally, physically, whatever. It's OK to lean on others in times like these.

[janklo]

Dezy, I just want to say I think it's a good idea to proceed cautiously and get a lot of information. You don't want to rush in and have abdominal surgery and then find out there is more stuff in there and have to heal up and have HIPEC later. on the other hand, you don't want to have HIPEC if this isn't cancer.

The HIPEC doctor we are using does not like his patients to have had abdominal surgery right before he attempts HIPEC, so that is a consideraiton to me, in case other HIPEC docs feel that same way. I think a third opinion is a really good idea, see what another doctor thinks/recommends.

Lauren had no symptoms before her peritoneal mass was found. She was doing a ZUMBA workout 3 days week and walking 5 miles the other days. Didn't feel sick at all, just found the little mass on a CT. Her PET didn't show any uptake either, very similar to yours. So get as much info as you can and make your decision based on all of it.

[dezysmith]

Janklo -- yes they would biopsy it while I was under and have the HIPEC there ready if in fact it is cancer. And yes my situation sounds a lot like your daughters unfortunately. SciFletch, it was so good to talk with you. My boyfriend think I shouldn't go for a 3rd opinion, but I would feel better doing it. But I am still going to schedule with the earliest available this coming Monday and try and get in somewhere quick. I want this thing out of here .... I need to move on with my life. I already feel like I've buried myself I am so depressed. I guess I could work on that after my surgery ... it is an awful feeling. This is worse then when I was first diagnosed.

[dezysmith]

Janklo I sent you a PM .... thanks!