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Stranding

evolo58
Posts: 293
Joined: Dec 2017

Well, I got my first CT scan after the surgery.

Good news ... the main organs seem either stable or fine. That's actually great news. My appendix is very slightly inflamed, but there is no evidence of anything concerning other than the inflamation, and other things can cause this that aren't cancer-related. That will be a watch and wait situation.

Bad news ... there is a scant amount omental stranding. Very little, but still there.

Even referencing this forum, I see pitifully little about stranding. I found ONE source while Googling. One.

From what I've read, and from my conversation with the gyno-onco, the story goes like this:

Stranding refers to scarring or stretching of tissue; usually in the case of cancer, around the site of the tumor. Most of the times, it's fine, but there are cases where this could be a precursor to something of concern. So I could do one of two things. much like you lower-stage ladies have to face if you have a Type II (I was diagnosed UPSC Stage 4B):

1. Watch and wait because this really could be non-cancerious or

2. Get a little more chemo to further insure against a problem. The gyno-onco is recommending two more sessions; possibly a third one. Probably a CT scan after the two or three sessions. (Oh, fantastic! I am just so, so calm about these.)

Like many of you ladies, I'm going for the two more chemo sessions. The more mopped-up I am, the better.

So that is my post-surgrey follow-up. I notice that CheeseQueen also had stranding last year. Just when I thought I knew all the lingo!

LisaPizza's picture
LisaPizza
Posts: 238
Joined: Feb 2018

I don't know that lingo either! I admire women who are able to take a less aggressive approach when it's reasonable. But I'm with those who are afraid not to do everything possible. Both roads take a lot of strength.

CheeseQueen57's picture
CheeseQueen57
Posts: 820
Joined: Feb 2016

Yea, I had stranding and nobody really explained it to me. Ultimately I ended up with a reoccurrence in the peritoneal area 8 months after completing first line therapy.  Fortunately the Megace has shrunk it so it’s almost undetectable at this point. Hope it keeps working. Good luck to you, sweetie. 

evolo58
Posts: 293
Joined: Dec 2017

Great. 

I wonder why this isn't mentioned that often. As the gyno-onco explanied, this could very well just be scar tissue. We will have to see on the next CT scan after the chemo. If it clears up, great. If it stays the same, it's probably watch and wait. Hopefully, that's all I have to contend with. 

Most stuff I've read deals with it pre-surgery, where thre is almost no chance of it being scar tissue. There is very little about it post-surgery and the rough percentage of it being scar tissue v. something worse. 

This is the ONLY resource I can find that explains things in simple English, and my gyno-onco comfirmed the info is true:

https://healthunlocked.com/ovacome/posts/134376507/peritoneal-stranding

Although this source refers to ovarian cancer, I couldn't find anything about stranding in the ovarian cancer forum here. Is it THAT rare? If so, I'm still an outlier in an outlier cancer. Nifty. 

I guess I am lucky in that my gyno-onco at least called me up to explain it. She told my husband that she did not want us to worry unecessarily; that this is just a precaution or a mop-up, and does not affect my prognosis at this time.

Thank you for responding, CheeseQueen.

Re-reading the few stranding posts here again, sometimes I wonder if the care team has its own version of scanxiety ... every irregularity, however small and even most likely benign, is now picked apart and fretted over. What is strange is that the stranding in the few in-English sources I see, including posts here, refers to recurrences. I just finished first-line on May 22, so my gyno-onco says this is NOT a recurrence. She was quite clear it's a clean-up.

oldbeauty
Posts: 197
Joined: May 2012

All I can offer is that I ended up with 12 rounds:  two rounds with carbo and taxol and then 4 rounds with alternating carbo and taxol and then 6 rounds with carbo and taxol again.  The reason was my liver enzymes went up sharply and the doc alternated trying to see which drug was the culprit.  They eventually got down to normal levels and we proceeded with 6 rounds of both drugs together.  I was left with significant neuropathy in my feet from the Taxol but I am now no evidence of disease.  Like CheeseQueen, I did benefit from Megace treatment for 5 years after my first recurrence.  My dx, however, is endometrioid adenocarcinoma Stage IC, Grade 2.  I have fought the disease 3x in 13 years.  Do you know your estrogen and progesterone receptor numbers to ask whether Megace might be worth a try? Best wishes with your decision.  Oldbeauty

Tamlen's picture
Tamlen
Posts: 207
Joined: Jan 2018

oldbeauty, I was just talking with my gyn/onc yesterday about neuropathy, because I'm using the cold therapy mitts and socks with good results so far (I've only completed two cycles, though). She mentioned that she's had several patients with very bad chronic neuropathy in their feet who have recently tried cold laser therapy with VERY good results. She reported one woman who could barely walk due to the neuropathy -- she stumbled over everything -- and who had 75% improvement after just one treatment. It's only anecdotal so far, but my doc thinks that therapy may offer real hope for folks who are suffering. I wonder if there's a clinic or hospital in your area that offers it?

oldbeauty
Posts: 197
Joined: May 2012

I will raise this option with my doc at my next check up, Tamlen.  Best wishes, Oldbeauty

EZLiving66's picture
EZLiving66
Posts: 1363
Joined: Oct 2015

I am going to check on this cold laser therapy for foot neuropathy.  I've never heard of it before. Thanks!!!

Love,

Eldri

evolo58
Posts: 293
Joined: Dec 2017

Right now, we're concentrating on the strong possiblity that this is fixable by the extra chemo session or two. According to the nurse, in most cases, it is. From what I understand, it's a very, very small area. According to the link and the doctor, there is a strong possiblity that this could also be scar tissue. There is no clear way of knowing. No simple biopsy or test to find out. I need to stay positive and hope it's one or the other; preferably the scar tissue.

Since she did offer the watch and wait option, I'm gathering it really is a tiny area, but hey ... while I'm still fairly only barely not hairless, I might as well go for the extra zap or two. 

It is good to know that extra chemos after first-line to clean stuff up is NOT unusual, though. Twelve chemo treatments! Even if four of them were either/or taxol or carbo, that still is an awful lot. 

No, I don't know the estrogen and progesterone receptor numbers. UPSC is usually not estrogen-driven, so that hasn't come up. Howver ... and I sound like I'm probably contradicting myself ... I know that some Stage 4Bs do benefit from progesterone. So I'm guessing that estrogen might play a factor in UPSC sometimes? I was going to see if my doctor had the Foundation One report yet. I know my medical insurance covered part of it. We got a check for the amount it covered.

And I thought endo was the so-called "easy" cancer. Hey, I believed that junk too, once upon a time! Easy, my butt!

CheeseQueen57's picture
CheeseQueen57
Posts: 820
Joined: Feb 2016

My doctor didn’t think the Megace would work for me because although I was hormone sensitive, my tumor was high grade and I’m 60 years old. But it was low risk to try and fortunately it’s been working b

pinky104
Posts: 574
Joined: Feb 2013

I don't think stranding was mentioned in any of my reports.  The first time around, I had no cancer found in any lymph nodes, yet I still ended up with a recurrence after about 7 years.  I was a IVb UPSC originally, and ended up with cancer in the peritoneal area and a couple of other places (like wrapped around the ascending colon) the second time around.  I had another very involved surgery, another 6 day hospital stay, and more frequent chemo treatments than I had the first time, and if I'd been given the chance for more chemo to get rid of stranding, looking back, I certainly would have done it.  But the decision is up to you.  My GYN/onc. advised me that he'd probably be treating me again in another five years or so.  Cancer was found in two lymph nodes the second time around.

evolo58
Posts: 293
Joined: Dec 2017

I can't take the chance. Even if the chances it's not scar tissue are only, let's say, 30%, you just can't play games when it comes to this. And after reading that women can have more clean-up chemos than my onco-surgeon recommended, I feel a bit like a whiner. :) The goal, I think, is to be more sure just what is there and if it's something I need to get rid of, get rid of it before it haunts me years later. I would think ... and this is a wild guess ... that if after a couple of chemos the stuff is gone, it's time to break out the bubbly and finally celebrate, and hope this nasty beast never darkens my door again. 

If it hasn't changed a bit, it still could be scar tissue. Chemo does not get rid of that. But I would guess ... again, wildly ... that if it's stable, it might be more reassuring to both of us. I only wish there was a way to biopsy the area. Obviously, there isn't.

barnyardgal
Posts: 227
Joined: Oct 2017

I have a friend who had neuropathy after Taxol. She started acupuncture about 5 years after chemo and it resolved in her feet but not her hands. Cold laser is helping her hands though.

I agree with doing as much as possible to beat this cancer. I've had 6 chemo treatments and protocol for adriamyacin and carboplatin is 8 treatments. I've had 6 and radiation and scheduled for #7 first week in June. Not sure on #8 as the adriamyacin got me pretty sick and the doctor is hesitant about #8. If I have to I can do it, but frankly I'd rather not. But I don't want this back either.

I'm back to running and gardening and feeling good. But  we'll see how #7 goes. Fortunately, radiation went fine and side effects are pretty well gone.

 

Tamlen's picture
Tamlen
Posts: 207
Joined: Jan 2018

I went back to my baseline PET scan results after your post, evolo58 and what did I see? A mention of stranding!

Mine says, "Prior CT visualized focal area of stranding with tiny central area of calcification adjacent to a segment of the descending colon and may represent an area of fat necrosis or sequela of prior epiploic appendagitis." The stranding area was not picked up the PET scan. I have had unepxlained occasional sharp pain in that area for 15 years and it's had much scrutiny, so who knows what it is. My gyn/onc is not concerned about it but I sure will be paying heightened attention to it now with your raising this.

BTW, I'm a Grade 1, Stage IVB (originally staged 2, but everyone was then shocked to find nodules in my lungs).

Thanks.

evolo58
Posts: 293
Joined: Dec 2017

I know this has been brought up before, but I still can't figure out why insurance companies drag their heels on PET scans. At this point, I really don't have the money to pay for one independently.

Apparently, from what I read, there are different kinds of stranding. Based on the doctor's response, I'm not even sure if she knows what the CT scan tech found. Maybe the CT scan tech is not sure. But I've been coming up with all sorts of info, based on reports of stranding in other cases of cancer as well as the repsonses here, and have reeached the following conclusions:

1. It is the CT scan tech's job to pick up on and report everything ... even that tiny speck you probably had twenty years ago and that never caused a problem.

2. I am coming off first-line treatment after surgery (NOT frontline ... I've been watching too many TV commercials for that pet product! Errors corrected). This CT scan is kind of like Major Revision 1A, and will probably now be the one the surgeon will be watching.

3. More than six chemos are not unusual if the surgeon feels an extra one or two or three can better get rid of the junk inside you. (Thank you for that reassurance) In and of itself, it doesn't affect prognosis. I see some of you ladies have been around quite a while after that, and God hoping we're ALL around decades later!

4. Peritoneal adhesions are common in women after surgery; partcularly abdominal surgery. Most stranding can be related to that. The peritoneum is one favorite place for those. 

5. The general approach to this seems to be a watch and wait, and I can do that if I want according to my surgeon, but I see it from the surgeon's perspective in my case. I haven't officially come off first-line treatment (I believe you do when you've declared NED or your scan is deemed unremarkable and you then do the three-month visits), and we cannot rule out that the onco-gyno might have missed a tiny. tiny speck. Really, sticking one or two extra chemos in there followed by what I hope will be the last CT scan for a few months may better reassure the onco-gyno and me just what we have and we can move forward from there. She probablly also gleans from my personality that I would rather be safe than sorry.

6. I should note that my CA 125 is well within the normal range as of the last visit, and went down fromt the previous viist (I'm an 11.9 or so now), so if this is a point of potential trouble, it might not have caused any havoc yet. I hope not! My blood work from this visit might give us a small clue as well. A small clue. CA 125s are often not the most accurate tools.

7. I have spoken with a bunch of people who can understand my condition, and so far, not one has recommended the watch and wait. UPSC is just too capricious.

evolo58
Posts: 293
Joined: Dec 2017

Chemo postponed until 6/5. Need more platelets. :) Two more infusions, then we'll see what happens after that. According to the surgeon, there are actually THREE possiblities:

1. Scar tissue/adhesion
2. Dead/inactive cancer cells
3. A tiny, tiny area that is still not out of the woods. Usually, chemo zaps the problem area. Usually. At the very least, the gyno-onco might get a better idea as to what exactly IS there.

Obviously, I'm hoping for one or two! And if it's three, I'm hoping these two infusions get rid of that crap. Honestly, it's annoying now. The CT scan will probably not be done until August or so, though, near my follow-up three-month visit. I can understand why, but ... terrific.

Right now, I'm curious to see my CA 125s for the day. Is the number still going down? According to the surgeon, based on my past results, that might be a hint as to just what is in there.

I also got the results of my Foundation One report. I have a rare mutation. Not good, not bad re my prognosis ... just there. I'm still an outlier in an outlier cancer. I really, really hope that I'll be an outlier in a good way. I can use being an outlier in a good way!

Harmony09's picture
Harmony09
Posts: 75
Joined: Aug 2017

Just thinking about you with chemo coming up. I hope your platelets are behaving like they should, so you can get on with completing the treatment.

Best wishes!

Stacey

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