Surgical resection with a positive margin
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Lainy,
I am moving to Phoenix this friday and begin my new job on the 11th, and my husband will be moving to join me at the end of the month. Meeting half way would be great and I’m sure she would be delighted! She has her first appointment today with the oncologist and then a second opinion appointment next week. She is having a horrible second round with C-diff infection that she acquired in rehab, but is back on flagyl and it is getting under control.
As soon as I get situated in AZ and she has met with both oncologist, we would love to meet and talk with you. Her younger brother is struggling with throat cancer that has metastasized to lymphoma and he is really pushing her to seek aggressive treatment. She is confused and overwhelmed and would greatly benefit from talking with someone who has been through this before.If her arthritis weren’t so bad, I think she would really enjoy becoming friends with everyone here and chatting with them. Maybe when I am closer, I can type for her, lol. Thanks again and my email is: charlsonrachael@yahoo.com
Rachael, I would be honored to meet with your Grandma! I too am a Grandma. I live in Gilbert and perhaps we could meet 1/2 way if she is up to it if not I will find my way. Where are you moving to out here?
Thank you for your kind words and replies everyone! It is such a nice comfort to get advice from people who understand and have more experience in these matters. We are in the process of making appointments and I am also in the process of moving to phoenix permanently and will soon be much more involved.
Lainy thank you for your suggestions. As soon as I talk with my family and grandma I will forward on all that you have said and look up the physicians.
My grandma has some very important, difficult, and very personal decisions to make. Our family will stand by and support her decision. Perhaps I will ask her to join as well and reach out to other members for comfort and advice.
Lainy, is there any chance you would be willing to meet with her? She lives in Peoria, AZ in Vistancia way on the northwest side off the 303, but I’m sure she wouldn’t mind heading your way as she is feeling so much better.
RachaelMrsD….a warm welcome from me also. I don’t have much to add to what has already been offered to you only that I would consider meeting with two or more oncologists (and radiation oncologists) before making a decision regarding your grandma’s possible, further, treatments.
Good luck and please, keep us posted.
Hugs,
MarionMrsD, welcome to the forum.
My wife had positive margins after her Whipple surgery. Same story as your grandma: the surgeon thought that he had been able to achieve negative margins. Final pathology report proved him wrong. The pathologist found invasive cancer cells right at the surgical margin (but no gross tumor).
We opted to do chemo-radiation after studying the statistics. Most medical studies we saw seemed to point in the same direction: chemo-radiation improves survival in the patients with positive margins. If I recall correctly, one or two studies went as far as to say that 5 year survival rate was comparable in the two groups of patients:
(1) patients with negative margins who had surgery alone,
and
(2) patients with microscopically positive margins who had surgery followed by chemo-radiationKeep in mind, the quality of available evidence is not the best. All studies done so far have been small, non-randomized and retrospective in nature.
That said, your grandma’s age is the biggest question mark here. Side effects of chemo-radiation can be very harsh. My wife was a very fit 44 year old at the time of diagnosis. Despite her young age and great shape, she had a very rough time with chemo-radiation. Especially towards the end of the 6 week course. The last week of radiation was probably the lowest of the lows in our entire CC journey.
I agree with what Percy (PCL1029) wrote in the previous post. Given your grandma’s advanced age, think long and hard about balancing “quality of life” vs. “quantity of life”.
Hugs,
EliHi,
I think getting an interventional radiologist to see whether either chemoembolization or better ,radioembolization can be of any value for the positive margin in the liver, and other procedure like IBRT is appropriated.. The reason are less side effects and provide the best chance for long term management of the disease.
Your grandma had already gone thru a lot. I will check out above first, Our Lainy will be a big help to you since she go thru the whole thing and live in your area.
There are limited value of the current chemotherapy for this type of cancer and the side effects is not east to tolerate.
Either Xeloda alone(pill form) or Gemzar are among the least side effects of most of the chemo agent,
If this is me,myself, that is what I will do , if I am in my70s. Less suffering and a better feeling for all of people who surround me.
God bless.MrsD, first let me welcome you to our extraordinary family but I am sorry you had to find us. I have lived in Phoenix area for 18 years now and just recently moved to Gilbert. Congratulations on your Grandma going through such an extensive surgery. I do know of Dr. Koep and he is EXCELLENT. My husband saw his partner Dr. Cashman for awhile. They are tops. One of our members is from Washington State and he comes here also to see Dr. Koep.
Mu husband had a Whipple at the age of 73 and the CC returned 3 years later where his Duodenum used to be, he then had Cyberknife and that bought him another 2 years. I also have a rare Cancer but not CC and we used Desert Oncology at Desert Banner Hospital. Excellent, but now they left and joined Chandler Ironwood Cancer Center. I am now transferring over to Banner MD Anderson who just opened up here last fall. Do not know who my ONC is yet as they read your files then they have a Board who makes a decision on who you will see. Bottom line is who her insurance will let her see. Can she not stay with Dr. Koep? If not I highly recommend Desert Oncology, they have 6 or 7 ONCS. Otherwise I would stay with Dr. Koep. For a radiologist Dr. Jon Kresl. My Teddy also was told by 4 ONCS he could never have Chemo as it would not work for him. But, he did have radiation to bring the new tumor down before Cyber Knife and that was Dr. Kresl that the Koep office recommended. PLEASE email or call me if you like, I am here for you.This is my first post, but I have been visiting and reading other’s posts for awhile. My grandma is 79 and recently underwent a roux en Y surgery to remove her bile duct and a 2.2cm extrahepatic Klatskin tumor. Her physician, Dr. Koep was the head of the department for liver transplant surgery at Good Samaritan hospital in Phoenix and was phenomenal!
The surgery was successful and he was able to achieve negative margins, but he mentioned in his surgical report that he went up as far as he possibly could into the right hepatic duct before reaching the liver to obtain a negative margin. When we received the results of the frozen sections from pathology after the surgery, it indicated that the upper right hepatic duct had come back with a positive margin. In the surgical report, her post-op staging was T2a, N0, M0X.My grandmother had a difficult time recovering from the surgery, but she is doing very well now and is beginning to return to normal life. She had her external bile bag removed and the incisions are healing well.
We are now discussing the next step and meeting with a oncologist. Does anyone have recommendations for an oncologist or radiologists in the Phoenix area?
Does anyone else have experience with someone of her age tolerating radiation well? I’ve heard that chemo is not effective in cases such as hers. Does anyone have info on positive outcome from radiation after surgical resection with a positive margin?
Thank you for your input and it’s very nice to meet you all under such unfortunate circumstances.
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