Anxiety about scan and appt
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Hi Julie –
I hope that you are doing well right now. I think you should be seeing docs and getting all that anxiety out of the way.Sorry I didn’t mean to add more with the neural pathway but it was one that we heard about. I would say “not identified” would be great since as I read back over my husband’s pathology report I see what they saw too. It’s in both the surgery report and pathology report. It sounds pretty darn good to me. I do actually envy you being on of the 10%. That darn Ca19-9 drives me nuts since it’s up and down and every time it pops up, I freak out a little.
As for the drainage, I will tell you what we dealt with….they pulled the surgical drain from my husband’s belly the day we went home. He drained so much stuff out of his belly that after our 2 hour drive home, we had used everything that could absorb drainage. He took his shirt off and used it to absorb the drainage. I ended up putting a urostomy appliance on it (similar to what you use for a colostomy) and treating it like an ostomy. He drained up to a liter a day and eventually it started draining out of his laproscopic site too. It took about 2 weeks for that to stop. Then is incision actually opened up along the top and the right leg of the incision. Took forever to heal.
I will say that any abdominal wounds have a tendency to take longer to heal than most other. A lot of it has to do with the gut being “dirty”. Even if you do a great bowel prep there is still bacteria that hang out. Most wounds will drain a clearish yellow-pink drainage for quite some time (weeks for sure and at times months). Infection would be increased redness, warmth (hot to the touch), increased pain in the area, drainage that is foul smelling with a dark milky or grey color to it. Any of that I would see a doc right away.
And unfortunately most friends and family don’t understand what you are going through here. We have the same issue that after a year no one really wants to talk about it. And I still cry pretty regularly. In fact I had a good one already this morning. And my husbands family doesn’t believe that he is really sick, that I am making it all up just to keep him under my thumb (I still wonder how that works). They have no idea what’s really going on since they won’t talk to me.
Keep us posted and let us know how it goes.
KrisV
PS. You are always welcome to email me if you need a shoulder: dazoo3565@comcast.net
Hi Julie. Just a suggestion: Instead of talking about my Teddy over and over and explaining to people who don’t get it hour after hour (it’s enough to depress anyone of us) I started an email update that I sent out at night to family and friends. The update was all about Teddy and how he was for that day. The phone stopped ringing off the hook and the 2 of us could have nice quiet time when we could talk! People understood.
A for what may be going on with the Lapro scars I think Teddy had that too but his was a huge scar that started doing that at a few different points. It’s something that just goes along and can happen with any surgery. With that said DO bring it to your ONCs attention tomorrow. I do remember they took a while to heal. Best of luck tomorrow and we will be waiting for your results.Iowagirl wrote:.Thank you again…..it means so much to have a sounding board. When I tried to talk with one of my best friends today, she told me to get off the internet. Sigh.
My friends and my husband tell me that all the time! They don’t get it.
Kris and Lainy, Thank you for your reply. It’s almost 4 a.m. and I’m still up. I didn’t know if I could sleep anyway, but had to sort out what I wanted to keep from my cake shop (retired in Nov after 29 years). I just sold all the equipment and supplies, except for a small amount to make birthday cakes for our little grandson, moms, husband, son and daughter-in-law. It took me way longer than I thought it would. But, the good news is that I finished and now the buyer can come in next Saturday to box up everything and get it out of the house. I’m tired enough not to feel much of anything….opps….dang…soon as I wrote that, the tears started welling up. Okay….I know I have to suck this up and wait to see what Mayo says and what the scan shows. None of my blood tests ever showed anything out of the middle of normal for any liver counts, until the one done three days after surgery, which was to be expected. Within two weeks, everything was back to normal except for a slight anemia and other counts related to just having had surgery. My C19-9 was never out of normal….none of the blood marker tests were ever out of normal, so I can’t look to those as a way to tell if the CC is coming back. Maybe I’m one of the 10% that the C19-9 doesn’t work for.
Back to my question about seeding. I didn’t know about neural pathway seeding. I see a place on the pathology report that says “Perineural Invasion:Not identified.” It also has a place that mentioned Lymph-vascular Invasion and the only remarks are that the Major Vessel and small Vessel Invasion are not identified. I don’t know if “not identified, ” means that they didn’t see anything, or it wasn’t something they could tell from the pathology material.
Meanwhile, I have a problem with one of the laproscopic incisions…..it seems to be opening up and getting worse after 5 + weeks post surgery. My husband thinks they need to clean it out and start over with some regular stitches instead of the dissolvable ones. It and the main incision have been draining out junk for the past two weeks. The main one has some of the same problems, but not quite as bad. My GP said it was normal healing fluids, but I think the laproscopic one is more than that at this point. No sense to go see her tomorrow before I leave because I’ll see the internist and surgeon on Tuesday. If it weren’t for the laproscopic incision causing trouble, I wouldn’t be hurting right now. It seems pretty inconsequential, in the grand scheme of things, compared to the ICC, but it’s just one more thing to worry about right now.
Okay….I’m a little more calmed down now and I think I can go to bed soon. I have one more question that I”m going to post separately as it has to do with post surgical treatment.
Thank you again…..it means so much to have a sounding board. When I tried to talk with one of my best friends today, she told me to get off the internet. Sigh.
Julie –
I understand about the anxiety. I get it every time my husband has to have one. He doesn’t get upset but I surely do. I keep telling myself that the labs that are being done weekly are all good and that is evidence that everything is okay but it’s still hard.
As far as how the tumor “seeds” I know that often it will track along the lymph system or along nerves and such. My husband had one positive node after his resection. We did find out later (from the radiation ONC just before radiation) that it had tracked along his lymph system and that it had also showed some tracking along a nerve. So that is why he did 6 months of chemo and now we are doing chemoradiation. I would think that if your lymph nodes are clear and they did not find anything else in the liver, you are probably good to go.
Good luck and fingers crossed that all is good.KrisV
Dear Julie, what you are feeling is perfectly normal and what we call scanxiety.
I just went through this as I get Scanned every 6 months for another rare type of stomach cancer. I went to the ONC and a Surgeon as they all thought the GIST had returned. I did take it with a grain of salt as I just felt it was not so. Yea, I was right, it had not returned. Now 5 1/2 years cancer free. Got other problems but NO cancer so I can handle the rest. Any how I am praying and wishing for you to have good news in that even if something is back it can easily be handled. You never know how strong you are until “strong” is the only choice you have!I’m leaving tomorrow afternoon to go to Rochester Mayo for my post surgical followup which will include a blood draw and CT scan as well as consults with first the oncologist and surgeon.
After the surgery on Feb 28, I did pretty well, emotionally, though having the surgeon find a satellite tumor along the larger intraheptatic tumor has increasingly made my anxiety level ramp up. People keep telling me to calm down …that this was found early and everything will be okay. But, they don’t seem to get it that finding that second tumor, even a quarter of an inch in size, means that the tumor (5 cm) has started to seed….That’s right isn’t it?
I’ve tried to read up on how tumors seed…and can’t find anything to show whether they seed out in all directions always, or if they seed a few cells at a time…or what?
My main tumor was in the outer edge of the left lobe and the satellite was even further to that outer edge. Is it possible that the tumor only seeded in one direction or am I hoping for the impossible? The surgical margin was 2.2 CM and
clean as were the lymph nodes (6 were removed).I know that this will be discussed when I get to my appt on Tuesday, but right now, I’m bursting into tears again and find myself sobbing again like when I was first diagnosed.
Knowing that chemo isn’t very effective against this, and esp if it has seeded, has me feeling hopeless all over again.
Had to get this out to others that understand how I”m feeling. I don’t if there really are any answers to my questions and for some one who always has their ducks in a row, this is a nightmare.
Julie
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