iowagirl
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Hi and welcome to our group. I don’t have a lot to add, but as someone who is also going through treatment for CC (surgery followed by chemo) this year and also having had a heart attack 12 years ago, I can not imagine the fortitude your husband must have to get through everything he has.
Renal failure, heart attack, failed surgery, complications and now chemo……he’s one trooper as are you for being there for him as a caregiver. Any one of those things is enough to stop most people in their tracks.
You are doing the right thing in seeking out information about CC and educating yourself as fully as possible. There are no dumb questions…..as I’ve found out myself. Sometimes, there’s someone on the board who has an answer, but other times we won’t. If we have no suggestions…..I can guarantee you that there are many praying for you and your husband …many more than the ones who post. This is an emotional as well as phsyical disease and affects not just the patients but also their caretakers and other close friends and family. We’re all here for each other to hold each other up.
Hang in there.
Julie t.Marion, I won’t be at home tomorrow…have doctor appointment and a luncheon, but have something I’ve been wondering about concerning surgery for ICC.
At my followup at Mayo, I asked the surgeon if she would operate again if the cancer returned (assuming there wasn’t something about the presentation to make surgery not possible. Her response was that if it came back in 6 months….no, because she would consider it an aggressive cancer and apparently too prone to coming back again. But, if it was two years out from surgery, then yes, she would consider resection again to remove the cancer. But, what about between….that’s 18 months that isn’t addressed by her. I know I’ve read that other members of the boards have had repeat resections even within a year of their initial surgery for a recurrence. I see surgery in difficult situation as a very aggressive attack on the cancer and thus, if the cancer is removed, especially before it has spread outside the liver, there’s more of a chance to keep it at bay.
My questions:
1. What is the criteria for repeat resection for ICC?
2. Is there less or more of a chance for recurrence with a repeat resection vs some other type of less invasive procedure?Julie T.
Wendy, I am also an intrhepatic CC patient…also having had surgery and adjuvant chemo (6 rounds of Cis/Gem. I don’t know how you do it girl…with two kids. I admire your spunk and your stick to it attitude…..and a happy to hear that you’ve gotten through all those treatments, esp the chemo without having the side effects get to you too badly. I hope you find something here on the boards to help, but at the very least, we are here to listen.
Julie T.
Duke….I agree with you. That first sentence does certainly disagree with what most doctors/surgeons say. Upon doing surgery, my surgeon found a second, very small tumor close to the 5 c.m tumor…and thus I was said to be multifocal. Fortunately, she went ahead with the surgery and in fact she did not refer to that small nodule as being a met or satellite tumor, but instead, a “sister” tumor.
I may be oversimplifying the issue, but it seems to me that if more tumors are found , as long as they are at least in the same area as the one for which surgery was planned initially, why not go ahead?….esp if other parameters are good….such as no lymph node metastasis, at least moderate differentiation….after all….IMO…”some” chance is better than no chance at all.
In my case, they did not know the 2nd nodule was present…until they did an exploratory at the start of surgery, used an intra abdominal ultrasound on the liver and found the 2nd nodule. My surgeon went ahead…but what if she’d seen 2 or 3 or more….would she have gone ahead? I don’t know ….the subject never came up. I am certain that there are some on the boards who have had surgery with larger tumors than this study. It would be interesting to find out who was over that 7 c.m. size and if they’ve had a recurrence.
This link and discussion is one that I often think about. I know that others have had surgery on bigger tumors than mine was (5 c.m) but I didn’t know what the cut off was. I was surprised to see the 7 c.m. size considered large.
The results aren’t great, as you say, but IMO…it’s better than being told there’s nothing to be done…..and it just seems to reason that if you get rid of the offending tumor, there’s less chance of spread or further spread….and even adjuvant chemo has a chance to kill off microscopic cells and stop it altogether. Am I looking at this too simplistically?
Julie T.
That was indeed a very interesting article. Who would have guessed “spit” could possibly detect cancer and other diseases. Cool!
Julie T.
Moontje, What absolutely great news…and thank you for sharing with all of us. We all want and need to hear these fabulous reports of “shrinkage”…and “disappearance.” Big hugs your way…..Julie T.
Marion, This is a good post for anyone having chemo or radiation to read. I learned a few new things reading this and recommend it as reading material for any cancer patient. Thanks for posting.
Julie T.
Melinda,….I will openly and unashamedly admit that when I read your Oct 2014 post, tears ran down my cheeks. I am soooooo happy for you to receive the news of slow shrinkage and stable. I have to also admit that I’d be right there with your husband, grilling them for more info…more answers. That’s just the way some of us are wired, I guess.
Awesome news……so good to hear those positive checkups.
Julie T.
Tabytha,
You sound full of HOPE…and that is very important. I like the sound of your oncologist. She has the right mindset…and I am very encouraged to hear that she debunked the sugar myth. Not that sugar is great for us…..but that cancer feeds on it is a total myth that seems to keep circulating. Hmmm….I also found that Mexican food really went down well when I was on chemo……just though it was something weird about me…but maybe there’s something to it. I haven’t allowed myself a margarita, though I rarely drank before the chemo….but I just may go to my favorite Mexican place that makes the BEST frozen margaritas and get one this weekend.
)))) I will be watching for more good reports….and in fact, I”m expecting even better reports for you. Best wishes to you…..Julie T.Malcom and Genevieve, Love that good news. Thanks so much for posting your good news and stories. Keep coming back….it’s very good to for the rest of us to see success stories. Genevieve, I realize that some might not consider 3 resections a success story…but “I DO” . My CC was also Intrahepatic and with clean margins…but one satellite tumor and one 5 cm tumor beside it. My surgeon said that if it comes back in 6 months (or so) she would not reoperate…that it would indicate an especially aggressive tumor…but two years…yes. Of course, my hope is that it doesn’t return, but if it does, I hope that she agrees to operate if it is operable…..or I am lucky enough to find someone else who is as aggressive as your husband’s surgeon. Here’s a prayer and all good wishes that your husband and Malcom continue to fight this monster, cc, and win the battle.
Lainy….I’m sooooo happy to hear that scan came back clean. You so deserve that. Keep on , keeping on. Julie
Duke…..one additional thought to add to your list of things you’d do differently. When we were there in Feb, 2014, we stayed at the Kayler Grand Hotel, right across from the entrance to the clinic. We were checking email, etc on the hotel’s computers, located in the main lobby…looking for possible air flights for our son to come to Rochester to be there in time for my surgery the next day. However, the prices into Rochester were really expensive compared to other locations. The guy next to us told us about another alternative. He said the best cost option was still to fly into Minneapolis and then take a bus service straight from there to Rochester. The Mayo concierge probably has the name of that bus service, but it is strictly into Rochester and dirt cheap. It made a huge differential in cost between flying into Minneapolis as opposed to flying into Rochester. Also, the distance to the Rochester airport to the main Rochester area is quite a ways and the taxi fares get very expensive. The guy who told us all about this goes to Mayo every year for checkups and whatever is ailing him….and has used the bus service himself. When we were in the hotel, he pointed out that there was a small office right there for the bus people…to make arrangements.
I’m soooo glad to hear about your appt with Dr Alberts and his NP. I will see how this next appointment goes with my oncology fellow there and maybe make a change as time goes on to Dr. Alberts. I know I”m not in the same situation as you are……as right now, there is nothing for me to do but live life and wait…..nothing to treat or decisions to make about treatment options. But, I also don’t want to miss doing something we should be doing I do know I”m not the ONLY CC patient my onc has at Mayo and I do like him, but then, Dr. Alberts is in a class above.
Julie T.
Supermom, Can you hear me….I”m cheering you on….so impressed by you sticking to your guns and getting things done. Prof Stebbing must be someone very special. He has the right attitude…..to keep the patient around to eventually profit from better treatments to come. ANd…he’s going in with both guns blasting….very aggressive…….which IMO you have to be with this aggressive cancer. So….jumping up and down for you and your hubby…..and anticipating some really good news coming soon from you.
Julie T.
