dianne-n
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Betsy and Sue,
Congratulations to you both!!! I’ve been reading a few of your older posts and you are definitely inspiring to me! I had my surgery in Jan. 2010 so hit the 2-year mark this month and am also cancer free and feeling good. Actually, today I rode my bike 10 miles and briskly walked for 45 minutes. Thanks for posting your good news….certainly gives me hope!
Big hugs to you both!
Hi Marion, I would be very interested in a section on survivor stories….it could give us all hope, eventhough I suppose it might also be a little discouraging? I think it could help people when they are trying to decide treatment options given them by their doctors. I may have decided to have chemo after my resection if I’d gone to such a site… I am now kind of regretting not having done so. Could it be a new heading under General Forums?
Hi Cathy,
Have you read any posts from 32coupe who was diagnosed in 1996 I think…. an amazing story. (Hi bob if you read this.) Otherwise I’m not sure about CC free members. It would be nice if there was a site to write those success stories.
I will be thinking of you next week and will be hoping for good scan results for you. It’s always scary getting those results!
Best Wishes!Thanks to you all for your messages!
Kris…my very best wishes to you for a good outcome from your upcoming surgery….and may you be in that 5 year survivor group! I’m planning on being there too!
Sue,
It is so great to hear of survivors like you! My onc told me that if the cancer is going to recur it will generally happen in the first 2 – 3 years….so you are past that time frame! Congratulations!
DianneHi Randi,
I read with great interest your posts because you seem to be about 2 weeks ahead of me in diagnosis and surgery. My surgery for extrahepatic CC was at Mayo Clinic in MN on Jan. 5, 2010. My margins and lymph nodes were clear and my surgeon said it was not necessary to refer me to an oncologist – and now I’m kind regretting this decision. I have had 2 CT scans since the surgery (July and Oct. – when I had some sharp pains) and neither showed any sign of recurrence. At the advice of Lainy and others on this board I saw an oncologist a couple weeks ago who said he would have talked to me about adjuvant therapy in Jan., but would have let me decide if I wanted it or not. At this time it is not recommended. SOOOOOO….I go back to see my surgeon (who is the main doctor following my care) at Mayo in Jan. and am hoping for continued good news! For the first 8 months or so I think I was kind of in shock and really busy planning my daughter’s wedding so didn’t get too down about it all, but lately I’ve had some down days. I think the cruise with family is a GREAT idea!Nancy: My husband and I were just in Wanaque, NJ for a reception for our daughter’s wedding. Lovely area!
So wonderful to “talk” to others fighting this horrible illness!
Dianne
Hi Johanna,
I was diagnosed at Mayo Clinic in Rochester in Jan. ’09. I saw a brilliant hepatologist, Dr. Gores, who recommended surgery. Dr. Nagorney, also brilliant, did the surgery a week or so later and I am doing pretty well. Mayo is one of the leading clinics to do liver transplants in certain cases of CC. I send you my very best wishes. This is very scary stuff, that’s for sure, but I hope you find a doctor to help you and things improve for you soon!
DianneMargaret,
I am so sorry about Tom’s weight loss. I know of this from the patient’s viewpoint and it’s very strange. After my surgery in Jan. I just “could not” eat for some reason. My wonderful husband tried everything, including the talking to, but I ate very little….. and I was not even on any chemo. I lost 30 pounds, which fortunately I could spare, but am now eating just fine. I wonder if the lack of appetite has something to do with the sense of smell? After my surgery a good friend gave me some expense hand balm to use in the cold MN winter. When I smelled it I almost gagged because it smelled so awful and I wondered how she could possibly give it as a gift! Six months later when I finally got the balm out again, it had a very lovely, flowery smell. Not sure if the anesthesia or the cancer caused the nose problem???, but I found it very interesting. I’m going to write the names of these drugs, legal and illegal!, down in case I need them in the future. Margaret, so happy Tom has found something he can eat, and I hope the prescription helps even more.Dianne
Hi…
I first saw a hepatologist who is brilliant (and also told me my tumor was resectable):
Dr. Gores, Mayo Clinic in Rochester, MN
My resection was done by an equally wonderful surgeon:
Dr. David Nagorney, Mayo Clinic in Rochester
and I am now scheduled to see an oncologist who I hope is as good as my other two doctors:
Dr. Richard Kim, Moffitt Cancer Center in Tampa, FLDianne
Margaret, Lainy, Bob and all: I took your advice (thank you!) and have an appointment in a couple of weeks to see an oncologist at the Moffitt Cancer Center in Tampa, FL. Wonder if anyone has gone there to see Dr. R. Kim? Getting care in two locations, Rochester, MN and Tampa, probably isn’t too good, but I’ll switch to an oncologist at Mayo in Rochester if necessary. I have been reading other people’s posts and am a bit surprised (and saddened) that even when the cancer hasn’t returned, there can still be lots of other issues, ie. scarring, infection, etc, that can cause major problems. I guess we just deal with this one day at a time…and in the best way we can.
Val, the interdisciplinary approach sounds like a great idea. Wonder if my surgeon talks to the hepatologist and radiologists? Linda, do you know who you will be seeing at Mayo? Best wishes to you there – it is a wonderful facility!
I feel like I am getting to know a lot of you by reading your posts…your courage, strength, and – yes -even sense of humor sure helps me. My best wishes to you all.
Dianne
Hello all, and thanks for your input! I went to my internist today because of my back pain and he wanted a CT scan and bloodwork which were all “normal” – made my day. I haven’t contacted my surgeon at Mayo yet about a consult with an oncologist, but will. Val, after I saw your “T2N0” histology I looked over my records and only see that the surgeon called it “grade 3 (of 4) adinocarcinoma.” Not sure if that gives the same information as the T-N system? (I’ll bet if I read more of the information on this website I could answer that question….there are many questions I didn’t know to ask until reading this board.) Bob, sorry to hear you are still having problems after 13 years. Is scar tissue the culprit in the blockages? I wonder … is there anyone with a CC diagnosis who has been able to go back to leading a life without 6-month trips to their surgeon or oncologist?
Best wishes to you all…DianneThanks much for your response, Bob. And congratulations on being a 13 year survivor! Are you still seeing your doctors routinely? I agree that I just need to lead my life and not dwell on how much more of it I may have…that doesn’t do me or anyone else any good! Lainy, I looked up the photo of you and Teddy…nice to put faces with your names. It must be very difficult for you now dealing with your own cancer and being the caretaker to Teddy. I’m sure it helps being surrounded with support on this website. My thoughts are with you too.
DianneLainy, I am very sorry to hear that Teddy requires Hospice now. Could I ask if his lymph nodes were negative when he had his surgery and what his symptoms were when the cancer recurred? Both my hepatologist and my surgeon at Mayo in Rochester told me chemo and radiation are not proven effective for treatment of CC, so I guess that is why I didn’t question not seeing an oncologist until I went on this site. Thank you for clarifying the member status – I assume it is explained in some area of the website which I have not seen. I have been looking for good news on this site – for any CC survivors of 5 or even 10 years? Do you know if there are any? It’s hard to plan your life when you really don’t know how much more of it you will have. My husband and I were going to remodel our house, but don’t want to spend precious time doing that if the future isn’t that long. I don’t consider what you do selfish at all – you are helping others – and me – so much! Wish we could all get together and talk in person! And I’m definitely going to call Mayo on Monday.
DianneThanks to you all for your input. Linda, did you have clean margins and negative lymph nodes? My doctor (the surgeon) said that since I had both I didn’t need to see an oncologist. I see him again in January and will definitely ask to see an oncologist and also a radiation oncologist at that time. My problem is my surgeon is at Mayo in Rochester, MN and I’m a snowbird leaving for FL next week. How long ago was your surgery? And could I ask about the titles – what does “all star”, “senior member” and “moderator” mean as compared to “member”? I see my PCP on Monday before we leave and I will run all of this by him.
DianneI can’t believe I found this website and I’ve been reading postings for over 3 hours! Thanks so much for all of your responses….I will call my surgeon tomorrow and mention my back pain and ask for a referral to an oncologist. Margaret, I tried to find the journey for your husband, but was not successful. It’s probably because I’m way too tired. I’ll try next time.
