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Short review of surgery

evolo58
Posts: 293
Joined: Dec 2017

Since I was out for most of it, hopefully there will be more info shortly. My husband didn't take notes. I may be changing info here, so please forgive me for that.

The lady parts all came out laparospocially/vaginally (from my husband's description, I'm guessing an LAVH), as did part of the omentum. When my surgeon looked at my omentum/peritoneum, she did not see much to take out, so I'm guessing a partial omentectomy. At least some of the removed omental area was indeed scar tissue (I was at least partially right!). There was a small area of concern, but my surgeon was even puzzled by it, and she's been a oncologic gynecological surgeon for more than 10 years and has an excellent reputation in a well-renowned cancer facility. Of course, she could not take any chances, and after she removed the weird spot, a sample of the affected area was taken out for pathology as well. Good guess as to what it was! I might wind up in some sort of medical journal yet. We'll see in a few weeks, I guess.

I went home shortly after surgery. I was in the hospital all of seven hours from admission to discharge. I'm sitting at home with Mr. Pillow watching the Olympics as we speak. Going to the bathroom for the first few hours after surgery hurt like &*#$ because of the catheter (which was removed in the hospital), but it's now just merely uncomfortable. That helps because I've been trying to hydrate like mad. Throat still a little sore from the tube, mostly on one side. It was both sides before

I get to cowgirl it out tonight. Unfourtuantely, I couldn't get the painkillers from the pharmacist in time, and have to resort to Tylenol. I'm still slightly nauseous, so it was a wheat muffin and unsweetened applesauce for dinner. That was enough, even though I haven't had solid food for more than two days. I'm not ovely worried about sleep, though ... I slept most of the afternoon and evening. I did make sure to get up and walk around the top floor of my house (my bedroom is on the top floor) a few times. 

This surgery really tires you out, I'm discovering, so it's off to bed for me. See you later!

MugsBugs
Posts: 110
Joined: Jan 2018

I can't believe you are home 7 hours after surgery - I thought I was fast - 14 hours.  Don't expect to have an appetite for a while - and don't eat anything too spicy (my husband was doing the cooking and wanted to add flavor - read spice) - not the best thing after surgery.  Get as much sleep as you possibly can.  I thought I would catch up on Netflix binge watching and found I couldn't concentrate.

The hard part is over girl - now just take care of yourself. Two weeks after surgery I am beginning to feel like myself.  Took my first car trip - 2 1/2 hours to the beach.  I tolerated it very well - except for the golden retrieve who got really excited and decided he could jump on my stomach.

Take care and I am really glad everything went well!

saltycandy13
Posts: 167
Joined: Dec 2017

so happy it's over with.  There is a sigh of relief.  From reading what you wrote, I felt almost exactly the same way only I stayed over night and part of the next day.

Yes urinating was awful.  I remember having trouble with that.  And so sore.  But fact is, God bless you for being brave.  It takes guts and WE DID IT.  Now let's hope everything turns out good!

Blessings,

Karen

WinnieH
Posts: 21
Joined: Feb 2018

Wow, seven hours for the whole she-bang is amazing. Sending you lots of well wishes in your speedy recovery.

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

Wow...I could not have done that!

I was in the hospital 4 additional days but mine was open (big cut) and I ran a fever...

you have my undying admiration for being one tough lady...I hope you are feeling ok today and your recovery is going well...

sending healing hugs!

SF73
Posts: 277
Joined: Oct 2017

You are truly a wonder woman! So good to hear that all the problem areas are gone and you are recovering well. Look forward to reading your case study in an upcoming medical journal :) I think it is wise to keep using Tylenol. With heavier pain medication you pay back with constipation which is not fun. 

Northwoodsgirl
Posts: 559
Joined: Oct 2009

So good to hear you are home! Keep drinking lots of water and don’ t forget to move your legs while you are resting to keep blood clots from forming. Nothing better than being in your own home! 

Lori

evolo58
Posts: 293
Joined: Dec 2017

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. 

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

Did they give you a belly binder? that really helped me especially when walking around...

I had surgery on a Monday and didn't "go" until Friday! Be sure to have some GasX---I found the gas pains were worse than the surgical pains! They gave it to me in the hospital (I was in for 4 days---big incision and fever) but once I got home the gas pains were awful. Weirdly what finally got me to "go" was to have a few sips of red wine. My aunt opened a bottle and I was off the pain meds for a bit so I had a few sips and then I "went"...and it does that to me sometimes so yes if there is a food that makes you go by all means eat it! (I'm not recommending wine...lol)

I'm praying you don't have UPSC---it's hell...and I am stage 4B....I try not to think too often what that means...I let my radiology oncologist keep me from fearing the worst...he's good at that...

Be mindful of the fevers...post surgery that can indicate infection. I got one about 60 hours post surgery and I had to stay in the hospital...they said it was because I wasn't using the breathing thing (I hate that thing)...use it if they gave you one (the plastic thing with the tube where you inhale...can't remember the name)

As for yoga---I found that "wind" pose (on your back with knees up)helped with gas (my aunt had to help me get into that pose in bed). Be gentle with yourself...it was quite some time before I could do yoga and it was 7 weeks after my hernia surgery before I could hit a down dog...and I can only recently do a full vinyasa flow (up dog hurt for a while as did cobra and last night was the first time I could do locust or bridge).

Glad you are feeling better...big prayers for your pathology to be good...

evolo58
Posts: 293
Joined: Dec 2017

The pathology report for the biopsy was UPSC, and it was confirmed by a doctor at a different hospital. Looks like a mixed serous. I certainly hope for another miracle, though! I was clinically-diagnosed as 4B. But we'll see in the final report just where I wind up. While it looks like much of what the surgeon saw in the omentum was scar tissue and black thread-like stuff, I am very, very well aware that all it would take is one nodule to NOT be either of those. She did not say that all of it was either of these. No rejoicing yet. Not even remotely close. I really am going to have to wait for the pathology report and as you can well guess, am on pins and needles about that.

EDIT ... I did find something that can produce black thread-like appearances in the body, but not in the omentum (usually in the liver and spleen, and the CT scan found no such problems with those), and it's an extremely rare disease. I really wouldn't want to have it! 

I didn't get a spirometer. Weird. I got one for the myomectomy. I'll ask my care team about that as soon as I finish posting. 

ckdgedmom's picture
ckdgedmom
Posts: 166
Joined: Oct 2017

I'm surprised they didn't give you one...I have always had one after surgery...my latest was with the hernia surgery...I used it faithfully because when I had my hysterectomy my nurses told me fevers are often triggered by not using it enough and you can end up with pneumonia or an infection...

also watch your fever because of flu...my students have been passing flu around (hopefully I am not one of the lucky ones to get it) and their fevers have all been just under 100...if you feel extra icky check with your care team as pain meds and tylenol for fever can mask the symptoms...just be on the safe side...

did they take any lymph glands? mine was not in my omentum but was in uterus, tubes, ovary, cervix, vagina and in 3 of 5 lymph glands she pulled plus 2 she had to leave (too close to aorta) and then the radiology oncologist found the two in my neck (yes it traveled all the way up there)...I was 3C after surgery but they restaged me at 4B after the neck ones...no matter what the stage UPSC is the devil and I am sorry you have it as well...

if you don't get the spirometer I imagine you can do deep long slow inhales (like in yoga) and it might mimic it...

xoxo

evolo58
Posts: 293
Joined: Dec 2017

No lymph glands. From what my husband told me, it was pretty much the scar tissue and the whatever-it-was. Well, besides the lady parts below the waist.  I admit to also being curious about the whatever-it-was. Looking further, there are some rare inflammations that can kind of look like black thread. (That was the surgeon's description of what she saw.) Kind of?

I know the surgeon was smiling when she met with my husband. That was a good sign, I hope! She is usually not a smiley-smiley sort of person. Definitely not. So her smiling was not typical.

Since this is a teaching hospital, I saw at least a few students in the operating room. They might have had something very interesting to put in their reports!

From the get-go, our family thought there was something off about all of this. Something just hasn't made sense. Three of us, including I, thought that the surgeon would find something unusual. Not good or bad unusual. Just unusual. We thought this independently of each other. Hopefullly, it was good unusual! We all really need to see the pathology report, though. The surgeon did not tell us that ALL of the stuff she removed was scar tissue or whatever-it-was. We just know that that at least most of it was. And really, we need to know what Pathology finds out about the whatever-it-was. I would say my stage is pretty much a mystery now. This whatever-it-was might have changed things. 

No more fever.  I have learned that using your arms to get your body out of bed and chairs helps an awful lot. Strangely, I did not gain weight. My belly still looks wavy and weird, though! :) Some gas ... I see why that Gas-X is a good thing to have around. Still hurts in that area, but I hardly think that's surprising! :) It's been only three days ago!

evolo58
Posts: 293
Joined: Dec 2017

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.

evolo58
Posts: 293
Joined: Dec 2017

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
Posts: 97
Joined: Dec 2017

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.

 

evolo58
Posts: 293
Joined: Dec 2017

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!

evolo58
Posts: 293
Joined: Dec 2017

I did NOT hit this four times!

evolo58
Posts: 293
Joined: Dec 2017

Seriously?

evolo58
Posts: 293
Joined: Dec 2017

(Plays some sort of background elevator music.)

linmk's picture
linmk
Posts: 58
Joined: Sep 2017

"All Stage 4s tend to be whack-a-moles". I thought that was pretty funny, but it's true. It's a guessing game. Good luck on your recovery.

barnyardgal
Posts: 227
Joined: Oct 2017

Glad your surgery is over. My biopsy results were 1a but after surgery the doctor said it was a solid stage 1 cancer, but probably 1b. Pathology came back 3, grade 2. . That was a shock! 

evolo58
Posts: 293
Joined: Dec 2017

In a way, I would think that just as bad, if not worse. You go in fully expecting one result and come back with a much worse one. Egads.

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