Short review of surgery

Well, I find walking around during TV commercials helps. It's not like I want to watch them! I'm tentatively trying the most basic yoga positions, but obviously no down dogs for a long time! Gentle poses only.

I was not Wonder Woman once I got the Oxy, I assure you! But with surgeries, I usually try to space painkillers out after a couple of days, then just take one in the morning and evening, then just to sleep, then get off them. I don't like staying on painkillers any longer than I have to.

I see what you ladies mean about Days 2 and 3 being the worst. Ow! I have two Mr. Pillows ... the full-size one for bed, and my travel version for the computer.

My swelly-belly is weird. It puffs out over the belly button and under it, but is normal in the middle. I just try not to look too much. I do have slight fevers and occasionally, slight nausea. Not upchucky nausea. That might be nerves waiting for that Pathology report.

Of course, Pathology will tell the final story with the surgery. I'm really hoping that ALL the omental stuff was scar tissue, but realize that's a long shot. However, this weird stuff the surgeon found was definitely a long shot, so you never know. My surgeon said it looked like black thread. If the affected area was near my uterus, perhaps my previous surgeon tried sewing my omentum together once he cut it open to work on the uterus for my myomectomy? With black thread? That's bizarre, though. Way out there. I have Googled and Googled, and haven't found any cases like that myself. Maybe he accidentally left something inside when he worked on me? There are cases of that happening.

Even if this miracle occurs and by some really rare miracle I get my stage downgraded, though, UPSC is sobering. I don't see too much of a chance of the biopsy being that wrong.

Not entirely happy about the 7 hours. This was a major surgery! But in a way, I understand with the flu going around. With my resistance so low from the chemo, the doctor was probably trying to protect me. And while Googling, shorter hysterectomy hosptial times are not uncommon.

Still working on "Operation #2". My daughter's homemade popcorn usually helps, so I've enlisted her help in addition to prunes, dried apricots, wheat muffins and the usual stool softeners and Miralax. Lots of water, and I try to walk around. Right now, I'm not overly alarmed. This happens during the first three days of Chemo, and right now, it's only Day 2 post-surgery. I just have to keep prodding myself down there to do something. 

evolo58 said:

Got the pathology results.

Got the pathology results. Thanks for being such a buzzkill, docs.

Originally, when I saw the FIGO Stage 1A, I was ready to break out the champagne. The miracle I had been hoping so much for happened! I was downstaged! I nearly fainted from the excitement. From what I read, 1A surgical staging is the ultimate grade! 80%+ survival rate, as opposed to the 17-20% revised USPC 4B rates I was seeing from more-recent statistics! Short of a Lifetime Movie miracle, I had the best miracle I could ask for ... I thought. 

The doctor smiled at the final CT scan, and smiled broadly after surgery. She said she never saw thread-like stuff in the omentum before, but according to my husband, she did not think it was cancer. She said that everything came out really easily and neatly.

One thing that bothered me on the pathology report ... my omentum was positive for cancer. So how could I be a 1A? 

I was probably stupid enough to ask. Maybe I shouldn't have.

Turns out that because of the neoadjuvant therapy with the three chemos, if the omentum tested positive for cancer, the staging the doctors go with is the original clinical staging, since the first three chemos affect the outcome. So ... I'm still 4B, even though the final report says I'm a 1A. If the omentum did NOT test positive for cancer, I might have had a shot.

Also, my husband apparently misheard a detail, or I in my optimism misheard, or the surgeon wasn't clear. From the look of the report, the doctor wasn't 100% sure the dark thread-like stuff was cancer, which was why she sent it to be tested. There was a slim chance it could be related to an infection. It wasn't. Strange, though, that she never saw something like that before. You would THINK a surgeon who was in the field for 10+ years would have seen that in the past. Makes me more determined to use my second opinion for follow-ups in the future.

Furthermore, there are a few studies that suggest a mixed serous with the UPSC less than 25% of the tumor has a better outcome. Granted, that was only in about 1/3 of the studies, both my primary and second-opinion doctors denied this was true, and the sample for all of these studies, pro and con, was really paltry, but you cling on to every hope you can, however slim. However, apparently, I have pure UPSC. So I can't even cling on to that tiny hope.

I read here somewhere .... can't find it now, and it might be good I don't ... that someone had the same case. The tumor was really small and was in the fundus, like mine. It never broke out. But the cancer went to the omentum anyway, and voila! Stage 4B UPSC.

On the good side, I had an optimal debulking, the 1A grade and other indicators seem to indicate that the cancer was in the omentum, periotreum and uterus, the tumor never broke out of the uterus (such a tiny, tiny tumor, by the way), and other news of that ilk. I'm afraid to cling onto those hopes now. 

I need to stay strong. I don't feel I have an option to stay down. I have people depending on me, and I want to fight. But it's really a downer when it feels you're on a roller-coaster ride with this thing. This cancer not only messes with your body. It really messes with your mind.

So ... on to chemo on the 13th for three more sessions. Then we'll see what's what.

And yes, the nurse was more than wonderful. She told me to look at things this way ... even if I was a higher stage, UPSC is UPSC. It's not like there is a Stage 1 UPSC variety, Stage II UPSC variety, etc. A reocurrance at a lower stage is just as concerning and bad as a reocurrance at Stage 4. It's just that the staging doesn't change. Neither does much of the treatment. A 1C who has a reocurrence is still a 1C. A 4B who doesn't have one is sitll a 4B. The stages are more medical terms. UPSC is still a beast, whatever the stage.

She also agreed that statistics are extremely misleading, since they incorporate all different ages, different competencies of surgeons, treatments (or refusal of treatments), past medical history, etc. She agreed 100% and told me to pay little mind to statistics at all. Most are indeed from older cases (some going as far back as the mid-1990s), treatments have changed, and many other variables differ dramatically.

But let's face it ... other than one person who has been 25+ years NED, the longest survival I've seen here for UPSC Stage 4B is 7-8 years (so far). With new treatments, I have absolutely no doubt that more women can reach that 5+ survival mark, and we might be seeing 10+ really soon. (Keeping my fingers crossed for ALL Type 2s here, but giving a special shout-out to those not too far from that decade mark!) We see plenty of Stage 4s of different cancers live a decade and beyond. Stage 4 in general is awful for ANY cancer. All Stage 4s tend to be whack-a-moles. I also keep what EZLiving66 wrote in mind as well. Even with higher stages, a woman who has endo cancer for more than five years, including a womam with an advanced-stage Type 2, might just want to move on. She doesn't want to think about it any more than she needs to, and I wouldn't blame her in the slightest! So really, we might already have some more women living 10+ years with UPSC 4B. 

Howevr, I admit to being a little down in the dumps right now. I can see one thing, though: how women say they're a Stage 1a when they first come on here, yet report that their frontline surgical pahtology shows spread to the cervix, lymph nodes or other places, which would point to another stage. They probably mistinterpreted the report like I did, and these reports can be quite misleading. Maybe they didn't have neoadjuvant, but they might have had some sort of treatment before. Also, I can see how women can feel a little lost after surgery. Before, there is always the hope of a miracle, and you're being treated. Afterward, though, you have the cold, hard facts in front of you and there is always that lingering presence in the shadows. (And considering we now have THREE people confirm UPSC from two different hospitals, I think we can safely say I have UPSC!)

Guess I should get myself together and see what good I can in this surgery and report. There is good in there and I need to focus on that.

Wannabeatit said:

I live in a small town of

I live in a small town of 18000 people. There are about a dozen doctors and just mine alone has 5 upsc patients. He has 2 stage 4 and 3 stage 1‘s. One of the stage 4’s refused any treatment other than the surgery and refused any follow ups. She has now recurred in the bladder but it has been 10 years. The other stage 4 recurred after 5 years but just a small spot on her lung and is currently doing well. They are both in their late seventies. Hope these cases help. The stage 1’s have had no recurrence after 5vyears. I am in the middle of my treatment and I am a 1 also. I hope things will work out for you.

 

Seriously?

Wannabeatit said:

I live in a small town of

I live in a small town of 18000 people. There are about a dozen doctors and just mine alone has 5 upsc patients. He has 2 stage 4 and 3 stage 1‘s. One of the stage 4’s refused any treatment other than the surgery and refused any follow ups. She has now recurred in the bladder but it has been 10 years. The other stage 4 recurred after 5 years but just a small spot on her lung and is currently doing well. They are both in their late seventies. Hope these cases help. The stage 1’s have had no recurrence after 5vyears. I am in the middle of my treatment and I am a 1 also. I hope things will work out for you.

 

Actually, you have helped ... a lot. And I read something about our "cancer cousin" ... Ovarian ... that is even more encouraging.

A few disclaimers: Of course, I can't find the site now. So I can't cite it. Great. It was one study, so I need to take that into consideration. Other studies may yield different resutls. And this is ovarian cancer, which, though a cousin to UPSC, is not the same, and though survival rates aren't that different, has different variables, and according to one medical professional, the survival rates are a little more encouraging. (Ovarian cancer deaths are decreasing; UPSC's are not, but there are factors that can affect that.) 

However, the study has a few good points that can be a whole lot of trouble trying to find: The participants included many of more varied ages. There was a pretty good sampling in an area that has good medical facilities (CA). It actually put Stage 4s in a distinct group. And it answered a question that I'm sure many ovarian cancer survivors are wondering: Are medical advances helping overall survival BEYOND five years? I mean, five years is wonderful, but one would surely want more than that, correct? 

The answer is Yes, advances have helped. Definitely. Apparently, more and more Stage 4 ovarian cancer survivors are living beyond ten years. The study cited 25% Stage 4s! And it admitted that while one in four is still not a great rate, it does show great promise for the future. 

Reading some of the longer-term survivor stories and your account, Wannabeatit, is extremely encouraging, as is ckgdedmom's story of her neighbor who survived 25+ years with Stage 4 UPSC, as well as those surviving 5+ years with UPSC Stage 4 who pop by from time to time to say to us, "It IS possible. Don't think it isn't." Thank you! Hope is so important in fighting this thing! And Wannabeatit, I hope to see you in ten years or so saying how you did indeed beat this nasty thing!