iowagirl
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Lola,
I am glad I was able to help you in some way. I see you also got some other really great replies and I agree with them also. Only you can know what is right for you, but it helps to get the perspective of others.You asked about my surgery: My surgery was about 2 hours pre-op (most of that time I was asleep), 4 hours actual surgery and then 3 more hours in post-op recovery to watch for post surgical complications such as bile duct leakage, bleeding, and whatever else. My surgery was in the outer part of the left node. They removed two of the segments to remove the 5+cm tumor along with a small, quarter inch sized one. The surgery went very smoothly and surprised even the surgeon, who expected to see some complications due to my weight, diabetes and asthma (also had just barely recovered from pneumonia). Today is 6 weeks post op and except for an issue with dissolvable stitches dissolving before two of the incisions had completely closed, I’m doing fine. It will be another week and a half before those two incisions close (I had laparoscopic surgery…not open abdominal, so I have 5 port holes and one bigger incision….the latter having to do with my abdominal size). At that time, I will get a port installed and start chemo to hopefully kill off any stray, microscopic cancer cells that may or may not be there. I was pretty sore due to the 3 hour ride home from Mayo to our house after being dismissed on the 3rd day post op but at the end of the first week, there was a big change and some of the diaphragm pain went away. The only real issue has been continual pain in these two incisions, esp the one lap port. They seem to be filling in now, from the bottom up (only about a quarter of an inch deep, so it almost healed without having any trouble). I just had my post surgery followup at Mayo last Tuesday and the CT scan showed no new tumors, thank goodness. Blood tests were normal but always were except right after surgery. I had no raised liver enzymes through all of this. The surgeon got a 2.2 cm negative margin, took 6 lymph nodes which were all negative and did not see any visible spread of the cancer when she check the pelvic area before starting cutting into the liver. So, I am left with the one adverse risk factor, being her finding the 2nd tumor, even though small. I have been told by the oncologist that the small tumor does not necessarily mean the bigger one has seeded. The surgeon referred to the smaller tumor as a “sister” tumor. In other words, in her mind, the small tumor grew for probably the same reason as the first one did, not as a process of seeding. Either way, it makes me kind of crazy, as we went to Mayo only knowing about the big tumor…..turns out the CT scan done at home was very fuzzy (badly done) and as such,couldn’t be seen. Yikes! The new CT scan done Tuesday at Mayo was clear and crisp….so I don’t think we have to worry about something being missed. The only thing would be a microscopic cancel cell waiting to grow big enough to be seen on the next scan or a liver cell that is damaged in some way by whatever caused the first two tumors to suddenly change to cancer and grow big enough to be seen. So, of course, I’m thinking I want CT scans every 90 days…not three months, so that if something shows up, it can be dealt with at its smallest size. My surgeon said that if a tumor would appear again in a couple years, she’d consider operating again, assuming it was in an operable place in the liver. (she only operates on livers and pancreases) However, if another tumor appears in say 6 months or so….then no, she would not, because it would indicate an aggressive cancer. I know that there are surgeons whoi are changing their minds on that though…..and are going ahead with surgery in instances that they did not previously, but I’ll deal with that situation if it arises.
You also asked about the i-Pad we bought. It is an i-pad air….and I’m using it right now. We did buy a case with a built in keyboard, because I’m a touch typist and could not have stood using the on-screen iPad keyboard. It adds a little to the weight, but is worth it. It’s still so lightweight compared to a laptop. There is some kind of new keyboard that is either silicon or some such type material. But, I think you have to purchase it from the web. We didn’t have time for that….as we bought the ipad about 2 days before leaving for Mayo.
Hope all that helps you. Good luck and hugs to your mom.
Julie T.
Lola, I am about a week away from turning 62 and am now 6 weeks out from surgery as of today. I had a relatively short operation…..2 hours in preop, 4 hours in actual surgery and 3 hours in recovery, with them watching for complications before taking me back to my room at 10:30 at night. As early as the next morning, my husband remarked how much better I looked already. I was in the hospital from admittance at 11 a.m. on Friday to mid morning on Monday and then told I HAD to leave.
We could have stayed over at a hotel for another day, and I think it would have been a good idea….but the weather was closing in with another winter storm, so we hit the roads, (literally and figuratively….the snow and ice packed roads made the ride really awful.I have diabetes and am “obese” (hate that word) and have asthma, and just had barely recovered from a bad case of pneumonia when I had surgery. It depends a lot on how lengthy the surgery will be….and how difficult…how much they have to cut away and how much they have to manipulate organs and bump against the diaphragm as to how much pain and recovery there will be. My surgeon took out my 5+ cm tumor with two liver segments on the left node laparoscopally, but because of my size, they had to make an extra vertical incision about 3 inches long to be able to triangulate the scopes for the laparoscopy. That made a total of 5 hole type incisions and one vertical, longer type. I had a lot of shoulder pain immediately after waking up and for about 12 hours after due to the air they blew into my laparoscopic incision migrating to my shoulder. That has to absorb…or whatever it does to go away. Then, probably the thing that bothered me the most…and for a week after I was home, was pain in the right , lower diaphragm. It mainly made it difficult to take a regular breath, let alone a deep one. It suddenly went away and I felt a LOT better after that. If your mom has an “open” surgery as opposed to the laparoscopy version, like I had, then recovery “could” be slower or take longer.
Julie T.
Jason, thanks…that’s all I needed to know. I had two segments of the left lobe removed. The tumor was in one and partially into the 2nd one if I remember the surgical report right. I just was trying to understand the use of the terms and hadn’t seen that in the report. Thanks again,
Julie
Lola, All I can say is that if you want to go,….do it as it is as much for you to be there as it is them. And, if you “crack mentally,” it’s okay. It really sound like you do want to be there with them, but are afraid you will break down and make things worse. When my dad was airflighted to Mayo years ago, my brother did not make it up to the hospital before dad passed away (very sudden, aggressive cancer/large cell lymphoma). In retrospect, he wishes he had made the trip instead of waiting until dad passed.
When I had surgery on Feb 28th, we drove through a ground blizzard for 80 miles and only pea soup fog type visibility. Weather conditions continued to be horrible….19 degrees below zero making it dangerous to be on the road, in case you got stranded. So, for that reason, my husband and I both agreed that our only child/son, should not attempt the drive, no matter how much we wanted him to come or he wanted to be there with us. It was the right decision, but I half expected that my sweetheart son might ignore what we said and come anyway. However, I had told him that I needed to know he was safe..I didn’t want to worry about that too…..and that meant more to me to know he wasn’t risking his life on the road.
Before we left for Mayo, we quickly bought an i-Pad device so that we didn’t have to lug around a big laptop and as such, we had access to skype or facetime. While it isn’t the same as being there in person, I can’t begin to tell you how much it helped both my son and family and us to be able to SEE and talk to each other. Even my little grandson gave grammy on the iPad screen a kiss and told me he loved me. If you decide not to go after all andyou have an i-pad or laptop …and they do too, I would highly suggest setting up skype so that you can “be there” as much as technology will allow. It’s really pretty cool….because the iPad actually rings some tone and the Facetime session shows up. What did we do without technology?
The Skype and Facetime continue to be a great deal since I’m really trying to avoid catching anything new during surgical recovery….and in the future during chemo. Recently, our grandson caught strep…..so we have been doing Facetime again with the kids. Now our son probably has it also….so more Facetime instead of close contact. I need my family around and at least this allows us to stay in touch. We’re a small, but very close family. The Facetime and Skype allowed us to see each other and the kids could see changes every day in my recovery. And, it continues to put us all at rest to be able to see each other during the week
From a patient’s perspective, I was so glad my husband was there with me. I kept telling him over and over that I couldn’t imagine how hard it would have been without him there by my side. This isn’t just a walk in the park type of surgery. It’s frightening for the patient and everyone else. If you need to go, then go for yourself…and If you need to cry…then cry. If you think you’re getting out of hand, just excuse yourself to the bathroom, get a drink (I’m not advocating alcohol here…just a drink of anything liquid…as it tends to stop crying), take a short walk away from the scene and try to calm down before you step back into the room.
I hope that the experiences of my family might be of some help to you in making your decision. Whichever you decide to do…..do it with no regrets. Oh…and just one more point, if your mom is like most moms….she won’t want you to miss classes to be there. While that is admirable on her part, it isn’t a safety issue for you and if you feel you can afford to be away from the classes, then don’t let that stop you.
Julie
Oh my gosh….someone censor me. I started that post with I have a “little” to add and wrote another epic book. Fortunately, or unfortunately, I’m known for writing long emails….even if I try to be brief. Sorry if anyone is upset by the long post. Julie T.
Porter, I have a little to add to the collective pile of info or thoughts on this. As of tomorrow, I am at 6 weeks post op from a left node resection of two of the segments due to a 5 + cm intrahepatic tumor and a smaller quarter of an inch size one. My surgical margin with no cancer cells was 2.2 cm, really rather large, but I think the surgeon measured the distance from the small tumor to the edge of the big one and tacked on another margin to boot in an attempt to aggressively eliminate any cancer cells that couldn’t be seen but might be growing in the same orbit around the bigger tumor. The pathologist found NO other tumors than the two and no microscopic cancer cells either in the surgical margin. I had 6 hilar lymph nodes removed and they were normal. So, I’m left with the only really adverse risk being the multifocal aspect of my cancer…that is….two tumors. Stage T2b . The question in my mind, is, did the big tumor seed…but only one tumor grew because of it (that seems relatively unlikely)..or, is the smaller tumor a product of whatever process caused the first/bigger one. I believe my surgeon felt that the latter is the case, because she didn’t want to use the term, “satellite tumor,” but instead wanted to call it a “sister tumor”. In that case, whatever caused those two to form, may well cause more to form. When I discussed chemo with the Mayo oncologist on Tuesday, he realized that I was pretty informed on treatments , etc about this cancer, so we got into some deeper discussions. He agreed that there is no study shows that the current standard chemo used as first line against bile duct cancer has an effect one way or another to keep new tumors from growing. However, they do know that it has an effect in at least shrinking tumors that can be seen and thus, they speculate that the chemo could potentially kill off microscopic cancer cells left after surgery. He was very much advising I do chemo, but said it was my choice. However, when I went to my surgical followup, the surgeon asked at the end whether anyone had discussed chemo with me. I said yes, and that my husband and I would be discussing it when we got home. Her reply was, “You ARE doing chemo….we don’t do the surgery without the chemo.” She was that adamant about it. Now, I had already decided I was doing chemo…but I meant that we were going to decide if I’d have a port put in up there or here at home….and if the first treatment would be at Mayo when the port was installed or if it would be here at home, but she didn’t know that. She really felt very strongly that to give me the best chance, I should do chemo. I know I have to decide and do this for myself, but this woman took me on as a patient, knowing that I had diabetes and am obese and as such, not the greatest surgical risk for a procedure like a liver resection, but she did it…and I sailed through it and went home in a short 3 days…better than the best she expected…no complications, at least not there (until two weeks ago when I popped stitches on two of the incisions and now am trying to get them to close up). So, I feel like maybe she might take on another patient like me in the future again, based on how well I did….not assuming all diabetic and obese patients will do badly…..and I’d like to be her poster child for her doing this surgery….and then doing the followup chemo and then NOT having any recurrence. I know that it still could come back even with the chemo, …as my GP said today, cancer is fickle…and esp this one…..but I have as good a chance as any for that curative resection to end this with a cure. I was in tears all day today…..trying to deal with the percentage of this that come back after resection despite chemo, but my mind is made up….I’m (we’re) doing chemo. I agree with Mark. I never want to be in the piace where I found myself saying , “What if”, if the cancer came back and I hadn’t done chemo. I’ll be thinking about you as you go through chemo…and will be right behind you several weeks on the same journey. Julie T.
I need some help understanding this …anyone out there? The title of the study indicates curative resection without major hepatectomy? Does the latter mean that a whole node of the liver is removed and thus isn’t the same as a resection? The procedure I had was a liver resection, but they also called it a partial or something or other hepatectomy. It seemed like a pretty major deal to me….but from my perspective, the description sounded like a difficult operation. Just trying to figure out where I’d fit in this group, if at all.
Julie T.
Porter….thinking of you and hoping the side effects will be at least tolerable. My thoughts and prayers are with you. I have no experience yet with any of the chemo…I start in about a week and a half to two weeks. But my cyber hugs are sincere.
Julie T.
Kris,
Thanks for the idea of upping my protein intake. No one has said that to me before….at least not that I remember. Then again, I’m normally very organized, but while up at Mayo, I took an extra blood pressure dose by mistake….and really dropped my BP….to the point that I wasn’t talking right, was dizzy and had some vision issues while we drove the three hours home. When we got home at 4 p.m…..my BP was 92/47. YIKES!!! And at THAT point, I was actually feeling BETTER.
I’ve been worrying some about the diabetes issues and chemo, so it is good to hear from someone who has dealt with the two and a little of what to expect. While the tumors were in my liver, my blood sugar actually dropped like a rock. I even had a spontaneous low, the week before I was diagnosed, which I later discovered on my own, is a sign of liver cancer. My blood sugar had been 7.7 at the end of Dec, but by the time of surgery, it was 6.9. I was really relieved to hear 6.9 because the surgeon said she would not operate if it was over 8. One of the team told me that she probably would anyway, but it wasn’t lost on me.
My blood sugar has been up in the last two weeks more….taking more insulin, which the Mayo doctor said was probably due to the infection in my incisions….makes sense. I had thought it also might be due to the liver regenerating and kicking out more glucose again, but he didn’t think that was the case. In fact, I was surprised that he didn’t see any regeneration…it looked to him like the entire left lobe was gone, but it wasn’t. I’ve read the surgical report….they look two sections of the left lobe. So, I really don’t know what is going on there. Our appointment had to come to an end, but he said I could call him anytime…leave a message and he’d get back to me as soon as he could …probably the same day. I need to get my questions lined up for the poor guy again. I think I may be a challenging patient for him. On one hand, I know enough to understand all the medical mumbojumbo, but that just precipitates more questions.
VERY interesting that your hubby also is a 1.5 type diabetic patient. I was beginning to think I was the ONLY one.
There’s nothing like being special, is there?Better go…hubby has gone to bed.
Julie
Lisa, When you see this, please know I have held you in my thoughts and prayers. Hernia repair can be really a pain in the ….oh…wherever….you know what I mean. My husband had it a number of years ago and he had a rough time through the pain at first. I am praying that your pain is short-lived and you bounce back from the surgery. You are one of my inspirations on this board.
Julie T.
I’m very confused. I read the paper and found that the rate of tumor regrowth after surgery for ICC was 50-60%. My oncologist at Mayo on Tuesday said a similar number of about 50%. However, I had read in more than one article that the return rate was about 30-40%. Maybe I’m obsessing over numbers….but every percentage makes a difference in my mental health outlook toward a possible cure via the surgery I went through on Feb 28th. There’s a BIG jump between the bottom end 30% and the top end of 60%. My only adverse risk is finding a 2nd small tumor during surgery. I’d rather not had any adverse risks, but multifocal disease of the Intrahepatic CC is on the table. I had a big, negative surgical margin and no hilar lymph node involvement, nor any regional or distant growth.
Lainy, you are my birthday buddy. How fun!!! I will start chemo sometime shortly around my birthday this year….not sure if that’s a curse, or a present to myself. I’d really like to get past Easter and even my birthday before I do the first infusion, but if my incisions are healed, I know they want me to start as soon as possible. It really depends on them.
Oh….I know what you mean about preferring to spend time meeting a guy rather than going to Dr. appointments and obsessing over treatments. I’m happily married, so I’m not “looking”, but this whole thing sucks up so much time that I could be using to do fun things….things I’ve planned to do after my Nov retirement.
And…..I sure wish I could be spending the money for something more fun as well. Our Co-pay went from $5000 per year to $12, 000 per year on Jan 1st, 2014, due to the new insurance plans. We’ve already more than me that co-pay of course. But, thankfully, the new plan does have Mayo in their network. About 5-10 years ago, they did not for a number of years because Mayo and our insurance wouldn’t play nicely together with billing. Gah!!!
Thanks for your comments about diabetes and steroids. It’s been a concern of mine as I read about treatment during chemo for side effects. It was a steroid that started my diabetes….and I was diagnosed having diabetes initially with an A1C of 13 (and oddly enough…I had NO symptoms, other than I urinated one extra time per day if I happened to stay up all night working….otherwise, I didn’t….and I normally only go to the bathroom a couple times a day at most).
When you were on the steroids, how high did your BG numbers go? Did they have your increase insulin ….either baseline or mealtime during the time you were on the steroids?
Now that I’m home from Mayo, I have more questions. (I had a list of 23 for him when we met at Mayo on Tuesday…..
) I can call my internist/oncologist, but I want to maximize a phone call so I’m not calling all the time. I think we’ve decided to go back to Mayo to have a port installed…not so much because of the lack of expertise of our local doctors to do it, but because of the extreme difficulty the local nurses seem to have putting in an IV. The last local gal blew out two veins (I wasn’t surprised, considering her technique) and I had to insist that she was DONE. Prior to that, for a liver biopsy, there were 8 attempts to insert an IV, by about 4 different nurses, before they agreed to finally call IV therapy with their ultrasound machine. Then, Tuesday at Mayo, the guy who put in the IV prior to my CT scan did it first try and with hardly the feel of a pin prick. I was in tears prior to him doing it…I was so crazy upset over having to go through the IV thing again. My bad experiences here in town with this have extended back many years, so it’s not that I’ve just had recent bad luck. Some people are better at this than others, and really the others just shouldn’t be doing it….but I suppose it looked like a good career choice for a paycheck.
When I saw the surgeon for post surgery followup on Tuesday at Mayo, she said that the problem was that I had popped some stitches (dissolvable) and the leaking fluid that looked infected was caused by decaying or dead tissue. She cut that away and said it was superficial and would finish healing in a week to week and a half…not really a full fledged incision wound. She showed my husband how to put a wicking tape into the opening (about a quarter of an inch deep approx.) and sent us on our way. It still isn’t comfortable at times, but at least this should now heal up from the inside out in a short time. Okay..it appears that I worried over not too much. I’m still waiting for the culture to come back from the lab and still taking an antibiotic prescribed by my GP, but the surgeon said it wasn’t necessary. I just want to make absolutely sure that everything looks good before going off the antibiotic.
Percy, I am a relative newcomer to this site. But, what I’ve learned so far, from reading your posts and those of others, is that we all pretty much feel lost and hopeless, sometimes more than others. Never feel bad about posting what YOU are experiencing because some of the best replies I’ve gotten are from people who said, “Yes, we’ve all felt that way ….your response is normal.” You need to take care of YOU though….put yourself first when you need to do so. Thank you for all the wonderful posts you’ve made. I’ve read through so many of them since I was diagnosed 2 and a half months ago. You are a very special person in this world.
