› Forums › General Melanoma Community › Inoperable Tumor
- This topic has 16 replies, 7 voices, and was last updated 13 years, 1 month ago by
ShariC.
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- March 4, 2011 at 3:02 am
I'm new here in terms of posting but have checked the site off and on since I was first diagnosed in 2000. I won't go into all the details because I have fairly specific issue that I would like help with. My MM was in my left leg and when another showed up not so far away from the primary, I got to be part of an isolated limb perfusion clinical trial at MD Anderson. That went well and I was NED for three more years with a couple of sub-q's and some sarcoid tissue over the next few years—but no organ involvement until recently. The doctors did an endosco
I'm new here in terms of posting but have checked the site off and on since I was first diagnosed in 2000. I won't go into all the details because I have fairly specific issue that I would like help with. My MM was in my left leg and when another showed up not so far away from the primary, I got to be part of an isolated limb perfusion clinical trial at MD Anderson. That went well and I was NED for three more years with a couple of sub-q's and some sarcoid tissue over the next few years—but no organ involvement until recently. The doctors did an endoscopy because of some gastric problems. The visual showed masses of anomolous tissue while the biopsy confirmed melanoma. I had a PET last week. The PET radiologist says that the scan shows involvement of the duodenum. My surgical oncologist's interpretation is that there is a 6×7-cm mass between my duodenum and liver with infiltration into both. Because of the nerves and blood vessels in the area, he has declared it inoperable until it can be reduced with radiation.
I met with two radiologists today. One said that he wouldn't risk doing radiation because of the likelihood of damaging the liver. The other wants to start radiation and chemo next Tuesday. So some doctors say surgery is inoperable and others say radiation is too dangerous.
My interest is in getting additional opinions about these and other options–especially any experiences with surgeons who may not be so quick to declare a tumor inoperable.
Thanks.
Bob
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- March 4, 2011 at 4:22 am
Bob,
I recently lost my father to melanoma. He had wide spread metastatic disease so this was not an option for him. Have you heard of cyberknife? I don't know all the details of your current diagnosis but I feel it is something you should look into. It's a Non-Invasive Radiosurgery Robot that delivers high levels of radiation to areas of the body with extreme accuarcy. Basically, the tumors recieve the radiation needed to shrink without envolovement of the rest of the body and minumal if any recovery time. I've attached a link to the general cyberknife site, please contact me if you have ANY questions or comments.
Good Luck,
Amber O'Neal Hulin
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- March 4, 2011 at 4:22 am
Bob,
I recently lost my father to melanoma. He had wide spread metastatic disease so this was not an option for him. Have you heard of cyberknife? I don't know all the details of your current diagnosis but I feel it is something you should look into. It's a Non-Invasive Radiosurgery Robot that delivers high levels of radiation to areas of the body with extreme accuarcy. Basically, the tumors recieve the radiation needed to shrink without envolovement of the rest of the body and minumal if any recovery time. I've attached a link to the general cyberknife site, please contact me if you have ANY questions or comments.
Good Luck,
Amber O'Neal Hulin
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- March 4, 2011 at 6:00 pm
Hi Bob,
I'm sorry to hear of your recent findings. I think you are wise in searching out another opinion or two. I had a 4.5cm tumor in my liver in 2005. My surgical oncologist was very aggressive and removed 70% of my liver…the maximum amount of liver that can be removed and allow one to survive. He also removed my gall bladder at the time so the melanoma would have one less area to go.
In 2008, I had a recurrence…a peri-pancreatic tumor. It was in a very bad location…surrounded by major vessels and my numerous adhesions. I was told that surgery wouldn't be an option this time. However, after a long discussion with the same surgical oncologist, he agreed to give it a try…no guarantees, of course. Bottom line…he got it.
The surgical oncologist is Dr. Timothy Yeatman in the GI (gastrointestinal) clinic at Moffitt Cancer Center/Tampa. Rumor has it that he is doing more research than surgeries these days but I would highly recommend you contact him.
Keep us posted.
Stay Strong
KingStage IV 7/05 Liver mets
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- March 5, 2011 at 12:36 pm
My friend just had surgery at Moffitt and they removed like 55 inches of her large intestine because she had a met that was the mass of a grapefruit inside as well as wrapped around the outside of it. They were able to get 90% of it and now she is recovering and then going to start an immunotherapy trial…Moffitt does have some really great melanoma surgeons and work closely with their melanoma docs!
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- March 6, 2011 at 1:25 pm
PS…when I first went to Mayo Clinicin Rochester, MN they said my melanoma could barely be biopsied because of it's location to the vital vessels etc …it was in the right para trach area …heart lungs etc etc…the surgeon said he wouldn't consider removing it…unless perhaps it shrunk to the size of a bb…that was in June 09…however March 26, 2010 he agreed to do it and I have been NED ever since ( doing a vaccine trail for past 24 weeks)…so never take NO as the final answer!
I had researched and found successful surgeries that were done in cases like mine and I was ready to debate the issue and if he had not agreed I wanted a referral to someone who could…I never got to deabate or pull out my printouts…sometimes things just change….
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- March 6, 2011 at 1:25 pm
PS…when I first went to Mayo Clinicin Rochester, MN they said my melanoma could barely be biopsied because of it's location to the vital vessels etc …it was in the right para trach area …heart lungs etc etc…the surgeon said he wouldn't consider removing it…unless perhaps it shrunk to the size of a bb…that was in June 09…however March 26, 2010 he agreed to do it and I have been NED ever since ( doing a vaccine trail for past 24 weeks)…so never take NO as the final answer!
I had researched and found successful surgeries that were done in cases like mine and I was ready to debate the issue and if he had not agreed I wanted a referral to someone who could…I never got to deabate or pull out my printouts…sometimes things just change….
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- March 5, 2011 at 12:36 pm
My friend just had surgery at Moffitt and they removed like 55 inches of her large intestine because she had a met that was the mass of a grapefruit inside as well as wrapped around the outside of it. They were able to get 90% of it and now she is recovering and then going to start an immunotherapy trial…Moffitt does have some really great melanoma surgeons and work closely with their melanoma docs!
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- March 4, 2011 at 6:00 pm
Hi Bob,
I'm sorry to hear of your recent findings. I think you are wise in searching out another opinion or two. I had a 4.5cm tumor in my liver in 2005. My surgical oncologist was very aggressive and removed 70% of my liver…the maximum amount of liver that can be removed and allow one to survive. He also removed my gall bladder at the time so the melanoma would have one less area to go.
In 2008, I had a recurrence…a peri-pancreatic tumor. It was in a very bad location…surrounded by major vessels and my numerous adhesions. I was told that surgery wouldn't be an option this time. However, after a long discussion with the same surgical oncologist, he agreed to give it a try…no guarantees, of course. Bottom line…he got it.
The surgical oncologist is Dr. Timothy Yeatman in the GI (gastrointestinal) clinic at Moffitt Cancer Center/Tampa. Rumor has it that he is doing more research than surgeries these days but I would highly recommend you contact him.
Keep us posted.
Stay Strong
KingStage IV 7/05 Liver mets
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- March 7, 2011 at 1:39 am
Bob,
I had a a tumor on my pulmonary artery that was considered inoperable. A VATS procedure was attempted in order to do a biopsy, but it had to be converted to a thoracotomy. Since a distant node was also appearing on PET, a systemic treatment was chosen. I did 10 rounds of Temodar, had a complete response and have been NED for 3 years. Temodar is a chemo pill usually used for brain mets.
I wish you luck with finding the best option. Would you mind if I ask what GI symptoms you have had?
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- March 7, 2011 at 1:39 am
Bob,
I had a a tumor on my pulmonary artery that was considered inoperable. A VATS procedure was attempted in order to do a biopsy, but it had to be converted to a thoracotomy. Since a distant node was also appearing on PET, a systemic treatment was chosen. I did 10 rounds of Temodar, had a complete response and have been NED for 3 years. Temodar is a chemo pill usually used for brain mets.
I wish you luck with finding the best option. Would you mind if I ask what GI symptoms you have had?
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- March 7, 2011 at 2:07 am
Bob, I never had a mass anywhere near my liver, but I did have one in a very hard to reach place. It was at the hilus of my left lung. My options were systemic therapy, radiation, or complete pneumonectomy (whole left lung removal)
I initially researched cyberknife and radiation, but the thoracic surgeon explained to me that surgery would not be an option if I did the radiation, as it could make all of the major vessels in that area difficult to tie off if it were removed. I would strongly look into stabilizing your melanoma systemically and then seeing if you could get it surgically resected.
My treatments of choice would be 1. Interleukin 2 (while you still feel strong enough), w/a vaccine if possible. then Ipilimumab (less side effects) and then biopsy of the lesion for BRAF testing to shrink tumor w/BRAF inhibitor drugs.
If your melanoma is stable after any of these treatments, or even shrinks a little, then it would be best to consider surgery.
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- March 7, 2011 at 2:07 am
Bob, I never had a mass anywhere near my liver, but I did have one in a very hard to reach place. It was at the hilus of my left lung. My options were systemic therapy, radiation, or complete pneumonectomy (whole left lung removal)
I initially researched cyberknife and radiation, but the thoracic surgeon explained to me that surgery would not be an option if I did the radiation, as it could make all of the major vessels in that area difficult to tie off if it were removed. I would strongly look into stabilizing your melanoma systemically and then seeing if you could get it surgically resected.
My treatments of choice would be 1. Interleukin 2 (while you still feel strong enough), w/a vaccine if possible. then Ipilimumab (less side effects) and then biopsy of the lesion for BRAF testing to shrink tumor w/BRAF inhibitor drugs.
If your melanoma is stable after any of these treatments, or even shrinks a little, then it would be best to consider surgery.
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- March 9, 2011 at 4:09 pm
Bob: I can't really give you any kind of answer but reading your article and the replies confirms what is happening to me. I have a hard time getting Oncologists to give me recommendations. They will give me options, then let me choose. I don't like that. I have heart disease (40+yrs.) and my Cardiologists have never hesitated to tell me what I should do. I just had radiation on my face and chest. Two lumps were about golf ball size. They are much smaller now. A nurse got me to go to radiation. I know I have a lump in my lung and don't know what size. I can't take chemo because of heart and I have had many many ct scans. I just can't get myself to go to Dr. and ask for another ct scan. Scared.
In another post, I have asked if anyone might know what symptons I might have when the tumor in my lung gets quite large and starts interfering with things. I am so disappointed with Cancer Research. I feel they could come up with a cure or at least more stuff to slow Melanoma down. There is Ipilimumab and another one that the FDA is just sitting on. I have inquired about clinical trials and can't even get them to reply to my case. Cancer is such a big business that I don't think they dare find a cure. I am 79yr. male so have lived most of my life. What comes around comes around.
Good Luck to you. Retired in Nebraska
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- March 9, 2011 at 8:54 pm
Hi – I'm not sure what part of Nebraska you're in, or how close you are to Denver, but I started going to the University of Colorado Cancer Center last Fall. This is AFTER I'd been to Mayo and gotten the same type of "talks" you've been given. I completely agree with you. Yes, its ultimately our decision, and we're NOT doctors with all the tools under our belts. I've been frustrated about the lack of recommendations. I really like the 3 Melanoma Oncs at the University of Colorado. They see over 400 melanoma patients each year and have a very straightforward and agressive approach. If you can swing a trip to Denver, I recommend you get an opinion from them. Good Luck – Shari (I'm in Chadron, Nebraska).
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- March 9, 2011 at 8:54 pm
Hi – I'm not sure what part of Nebraska you're in, or how close you are to Denver, but I started going to the University of Colorado Cancer Center last Fall. This is AFTER I'd been to Mayo and gotten the same type of "talks" you've been given. I completely agree with you. Yes, its ultimately our decision, and we're NOT doctors with all the tools under our belts. I've been frustrated about the lack of recommendations. I really like the 3 Melanoma Oncs at the University of Colorado. They see over 400 melanoma patients each year and have a very straightforward and agressive approach. If you can swing a trip to Denver, I recommend you get an opinion from them. Good Luck – Shari (I'm in Chadron, Nebraska).
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- March 9, 2011 at 4:09 pm
Bob: I can't really give you any kind of answer but reading your article and the replies confirms what is happening to me. I have a hard time getting Oncologists to give me recommendations. They will give me options, then let me choose. I don't like that. I have heart disease (40+yrs.) and my Cardiologists have never hesitated to tell me what I should do. I just had radiation on my face and chest. Two lumps were about golf ball size. They are much smaller now. A nurse got me to go to radiation. I know I have a lump in my lung and don't know what size. I can't take chemo because of heart and I have had many many ct scans. I just can't get myself to go to Dr. and ask for another ct scan. Scared.
In another post, I have asked if anyone might know what symptons I might have when the tumor in my lung gets quite large and starts interfering with things. I am so disappointed with Cancer Research. I feel they could come up with a cure or at least more stuff to slow Melanoma down. There is Ipilimumab and another one that the FDA is just sitting on. I have inquired about clinical trials and can't even get them to reply to my case. Cancer is such a big business that I don't think they dare find a cure. I am 79yr. male so have lived most of my life. What comes around comes around.
Good Luck to you. Retired in Nebraska
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