› Forums › Ocular Melanoma Community › New to this forum– how did your doctors confirm OM?
- This topic has 30 replies, 4 voices, and was last updated 11 years, 1 month ago by
Sue33CT.
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- March 11, 2013 at 11:10 pm
My father was diagnosed with stage iv melanoma last November after a lump in his skull turned out to be melanoma. They could not find a primary on his skin. He has had a spot behind his retina for 20 years or more, which had undergone a very tiny change, but an eye specialist ruled out ocular melanoma on inspection. After his surgery to remove the skull met, his scans were clear. Fast forward to his latest scans from last week, and he has two spots on the right lobe of his liver, as well as apparent lesions on various bones. Today his oncologist, in combination with a different eye specialist who hasn't seen him for nine months, says that it's ocular melanoma, based solely on the fact that it has metastasized to the liver. I'm not convinced it's OM. He has good vision, so we would rather not have him lose an eye just to check on the OM status, when it's already spread anyway.
The doctor also said that the mets were progressing too rapidly for ipi or IL-2 to work. He is B-RAF negative. She recommends Temodar but says it isn't much use. We are collecting his records as quickly as possible to get a specialist's opinion. He is otherwise in pretty good health and is in no pain; sure ipi can take awhile to work, but don't some people respond within a month or two? I am also looking at clinicaltrials.gov. Any comments on treatment would also be appreciated. Thank you so much. I also cross-posted this to MPIP.
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- March 12, 2013 at 12:20 am
It sounds really odd that a doc would claim it's OM instead of cutaneous based solely on where it metastasized to. That's a conclusion a liver biopsy would find. OM such a rare bird, it's not unusual for many (most?) oncologists to be a bit off message on our little bug.
You need to consult with Dr. Takami Sato, the Guru of Ocular Melanoma. Here's the contact info:
Renee M. Zalinsky, RN, OCN
Senior Cancer Care Coordinator
Jefferson Kimmel Cancer Center Network
1015 Chestnut Street, Suite 622
Philadelphia, PA 19107
Direct 215-955-3158
Fax 215-955-1020
E-Mail: [email protected]–Tom
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- March 12, 2013 at 4:02 pm
I would think so. They are two different cancers. A doc that lumps them together might not be that up to speed on OM, which is not surprising given the patient ragte of 6 per million.
I'm guessing, in a comp[letely-non-medical-way-that-you-should-take-with-a-boulder-sized-grain-of-salt, that if the original biopsy said cutaneous melanoma, that the liver lesions would be the same. If there is no eye tumor, it's probably not OM.
Definitely probe further for the full story about their OM conclusion.
–Tom
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- March 12, 2013 at 4:02 pm
I would think so. They are two different cancers. A doc that lumps them together might not be that up to speed on OM, which is not surprising given the patient ragte of 6 per million.
I'm guessing, in a comp[letely-non-medical-way-that-you-should-take-with-a-boulder-sized-grain-of-salt, that if the original biopsy said cutaneous melanoma, that the liver lesions would be the same. If there is no eye tumor, it's probably not OM.
Definitely probe further for the full story about their OM conclusion.
–Tom
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- March 12, 2013 at 4:02 pm
I would think so. They are two different cancers. A doc that lumps them together might not be that up to speed on OM, which is not surprising given the patient ragte of 6 per million.
I'm guessing, in a comp[letely-non-medical-way-that-you-should-take-with-a-boulder-sized-grain-of-salt, that if the original biopsy said cutaneous melanoma, that the liver lesions would be the same. If there is no eye tumor, it's probably not OM.
Definitely probe further for the full story about their OM conclusion.
–Tom
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- March 12, 2013 at 6:09 pm
I am probing! We are going to see the Kaiser opthalmologist who thinks it's OM on Thursday, and are sending his full records up to UCSF today to get an appointment with a mel specialist there asap, who can hopefully coordinate with the UCSF ocular oncology specialist who thought it was not OM. I don't think they knew from the original biopsy what specific type of melanoma it was– maybe they should have been able to tell? In any event, UCSF is going to get pathology slides too, so they can re-run tests if they need to. Thanks, Tom. Love your occupation on your profile! My best wishes for your treatment; maybe we'll see you at Dr. Sato's offices one of these days.
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- March 12, 2013 at 6:09 pm
I am probing! We are going to see the Kaiser opthalmologist who thinks it's OM on Thursday, and are sending his full records up to UCSF today to get an appointment with a mel specialist there asap, who can hopefully coordinate with the UCSF ocular oncology specialist who thought it was not OM. I don't think they knew from the original biopsy what specific type of melanoma it was– maybe they should have been able to tell? In any event, UCSF is going to get pathology slides too, so they can re-run tests if they need to. Thanks, Tom. Love your occupation on your profile! My best wishes for your treatment; maybe we'll see you at Dr. Sato's offices one of these days.
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- March 12, 2013 at 6:09 pm
I am probing! We are going to see the Kaiser opthalmologist who thinks it's OM on Thursday, and are sending his full records up to UCSF today to get an appointment with a mel specialist there asap, who can hopefully coordinate with the UCSF ocular oncology specialist who thought it was not OM. I don't think they knew from the original biopsy what specific type of melanoma it was– maybe they should have been able to tell? In any event, UCSF is going to get pathology slides too, so they can re-run tests if they need to. Thanks, Tom. Love your occupation on your profile! My best wishes for your treatment; maybe we'll see you at Dr. Sato's offices one of these days.
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- March 13, 2013 at 9:47 pm
I was referred to the UCSF ocular oncologist, Dr. Paul Stewart, for a second opinion when my ocular melanoma was diagnosed a year and a half ago. (Apparently mine was a fairly straightforward diagnosis, but it's such a rare disease that my health plan wanted a second opinion.) I found him very knowledgeable and very personable, and everyone in his office professional, skillful, and caring.
I am also being followed at UCSF's melanoma clinic for mets – thankfully no mets have been found at this point! Although they don't have the volume of OM patients that Dr. Sato does, as his clinic is the main OM clinic in the country, they do have some smart, good, doctors who keep up on the current research on OM, and are aware of the differences between it and cutaneous melanoma.
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- March 13, 2013 at 9:47 pm
I was referred to the UCSF ocular oncologist, Dr. Paul Stewart, for a second opinion when my ocular melanoma was diagnosed a year and a half ago. (Apparently mine was a fairly straightforward diagnosis, but it's such a rare disease that my health plan wanted a second opinion.) I found him very knowledgeable and very personable, and everyone in his office professional, skillful, and caring.
I am also being followed at UCSF's melanoma clinic for mets – thankfully no mets have been found at this point! Although they don't have the volume of OM patients that Dr. Sato does, as his clinic is the main OM clinic in the country, they do have some smart, good, doctors who keep up on the current research on OM, and are aware of the differences between it and cutaneous melanoma.
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- March 26, 2013 at 8:03 pm
My father saw Dr. Stewart in December, who thought it was not OM at that time. We saw Dr. Phan, a very caring ocular oncology specialist, a few weeks ago, and she showed us photos of his eye taken last fall and just now. The small spot on his eye has spread just a bit in those months, so it does make sense to me now that they think it is OM. She said it was extremely, extremely rare that such a tiny spot as my dad had would be melanoma and would metastasize to the extent his has. He has had the spot followed by ophthalmologists for a good 20 years. Dr. Phan offered to refer us to Dr. Stewart again just to be absolutely sure… we believe her, but will be seeing Dr. Stewart again. We also have an appointment in two weeks with Dr. Daud at the melanoma center, who we hope can recommend a course of treatment.
My best wishes to you and hopes for continued absence of mets.
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- March 26, 2013 at 8:03 pm
My father saw Dr. Stewart in December, who thought it was not OM at that time. We saw Dr. Phan, a very caring ocular oncology specialist, a few weeks ago, and she showed us photos of his eye taken last fall and just now. The small spot on his eye has spread just a bit in those months, so it does make sense to me now that they think it is OM. She said it was extremely, extremely rare that such a tiny spot as my dad had would be melanoma and would metastasize to the extent his has. He has had the spot followed by ophthalmologists for a good 20 years. Dr. Phan offered to refer us to Dr. Stewart again just to be absolutely sure… we believe her, but will be seeing Dr. Stewart again. We also have an appointment in two weeks with Dr. Daud at the melanoma center, who we hope can recommend a course of treatment.
My best wishes to you and hopes for continued absence of mets.
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- March 26, 2013 at 8:03 pm
My father saw Dr. Stewart in December, who thought it was not OM at that time. We saw Dr. Phan, a very caring ocular oncology specialist, a few weeks ago, and she showed us photos of his eye taken last fall and just now. The small spot on his eye has spread just a bit in those months, so it does make sense to me now that they think it is OM. She said it was extremely, extremely rare that such a tiny spot as my dad had would be melanoma and would metastasize to the extent his has. He has had the spot followed by ophthalmologists for a good 20 years. Dr. Phan offered to refer us to Dr. Stewart again just to be absolutely sure… we believe her, but will be seeing Dr. Stewart again. We also have an appointment in two weeks with Dr. Daud at the melanoma center, who we hope can recommend a course of treatment.
My best wishes to you and hopes for continued absence of mets.
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- March 13, 2013 at 9:47 pm
I was referred to the UCSF ocular oncologist, Dr. Paul Stewart, for a second opinion when my ocular melanoma was diagnosed a year and a half ago. (Apparently mine was a fairly straightforward diagnosis, but it's such a rare disease that my health plan wanted a second opinion.) I found him very knowledgeable and very personable, and everyone in his office professional, skillful, and caring.
I am also being followed at UCSF's melanoma clinic for mets – thankfully no mets have been found at this point! Although they don't have the volume of OM patients that Dr. Sato does, as his clinic is the main OM clinic in the country, they do have some smart, good, doctors who keep up on the current research on OM, and are aware of the differences between it and cutaneous melanoma.
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- March 12, 2013 at 12:20 am
It sounds really odd that a doc would claim it's OM instead of cutaneous based solely on where it metastasized to. That's a conclusion a liver biopsy would find. OM such a rare bird, it's not unusual for many (most?) oncologists to be a bit off message on our little bug.
You need to consult with Dr. Takami Sato, the Guru of Ocular Melanoma. Here's the contact info:
Renee M. Zalinsky, RN, OCN
Senior Cancer Care Coordinator
Jefferson Kimmel Cancer Center Network
1015 Chestnut Street, Suite 622
Philadelphia, PA 19107
Direct 215-955-3158
Fax 215-955-1020
E-Mail: [email protected]–Tom
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- March 12, 2013 at 12:20 am
It sounds really odd that a doc would claim it's OM instead of cutaneous based solely on where it metastasized to. That's a conclusion a liver biopsy would find. OM such a rare bird, it's not unusual for many (most?) oncologists to be a bit off message on our little bug.
You need to consult with Dr. Takami Sato, the Guru of Ocular Melanoma. Here's the contact info:
Renee M. Zalinsky, RN, OCN
Senior Cancer Care Coordinator
Jefferson Kimmel Cancer Center Network
1015 Chestnut Street, Suite 622
Philadelphia, PA 19107
Direct 215-955-3158
Fax 215-955-1020
E-Mail: [email protected]–Tom
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- March 14, 2013 at 4:26 am
"He has good vision, so we would rather not have him lose an eye just to check on the OM status, when it's already spread anyway."
He will not have to lost his eye to diagnose OM – most people with OM do not lose their eye – to diagnosis or even to treatment for the cancer. The diagnosis is made by subjective tests like observation, ultrasound, and looking at photos of the tumor for certain telltale characteristics. Now the treatment for the cancer could mean removing the eye but that is only under certain circumstances. But if this is OM the eye tumor will need to be treated ASAP. As long as your Dad has the tumor in his eye – the cancer can continue to spread so that needs to be diagnosed by an OM specialist.
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- March 14, 2013 at 4:26 am
"He has good vision, so we would rather not have him lose an eye just to check on the OM status, when it's already spread anyway."
He will not have to lost his eye to diagnose OM – most people with OM do not lose their eye – to diagnosis or even to treatment for the cancer. The diagnosis is made by subjective tests like observation, ultrasound, and looking at photos of the tumor for certain telltale characteristics. Now the treatment for the cancer could mean removing the eye but that is only under certain circumstances. But if this is OM the eye tumor will need to be treated ASAP. As long as your Dad has the tumor in his eye – the cancer can continue to spread so that needs to be diagnosed by an OM specialist.
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- March 14, 2013 at 4:26 am
"He has good vision, so we would rather not have him lose an eye just to check on the OM status, when it's already spread anyway."
He will not have to lost his eye to diagnose OM – most people with OM do not lose their eye – to diagnosis or even to treatment for the cancer. The diagnosis is made by subjective tests like observation, ultrasound, and looking at photos of the tumor for certain telltale characteristics. Now the treatment for the cancer could mean removing the eye but that is only under certain circumstances. But if this is OM the eye tumor will need to be treated ASAP. As long as your Dad has the tumor in his eye – the cancer can continue to spread so that needs to be diagnosed by an OM specialist.
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- March 14, 2013 at 1:02 pm
Ditto — I didn't lose my eye. OM mets diagnosis was a liver biopsy for me.
Granted, I'm something like 20/200 in the treated eye, so you wouldn't want me flying a helicopter near your house, but my huge blind spot is an excuse to ignore people standing to my right, so it can come in handy.
This June, I'm having a cataract out of the same eye — induced by the rasiation, so we knew it was coming. Considering the other procedures I've had, this one should be no biggie. Kinda like I look forward to PET scans now as good naps.
–Tom
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- March 14, 2013 at 1:02 pm
Ditto — I didn't lose my eye. OM mets diagnosis was a liver biopsy for me.
Granted, I'm something like 20/200 in the treated eye, so you wouldn't want me flying a helicopter near your house, but my huge blind spot is an excuse to ignore people standing to my right, so it can come in handy.
This June, I'm having a cataract out of the same eye — induced by the rasiation, so we knew it was coming. Considering the other procedures I've had, this one should be no biggie. Kinda like I look forward to PET scans now as good naps.
–Tom
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- March 14, 2013 at 1:02 pm
Ditto — I didn't lose my eye. OM mets diagnosis was a liver biopsy for me.
Granted, I'm something like 20/200 in the treated eye, so you wouldn't want me flying a helicopter near your house, but my huge blind spot is an excuse to ignore people standing to my right, so it can come in handy.
This June, I'm having a cataract out of the same eye — induced by the rasiation, so we knew it was coming. Considering the other procedures I've had, this one should be no biggie. Kinda like I look forward to PET scans now as good naps.
–Tom
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- March 26, 2013 at 8:12 pm
I'm sorry about my ignorant post about necessarily losing an eye to test for OM… I hadn't studied up on OM since the doctors had said he didn't have it. The plan for my dad is to get some type of systemic treatment to reduce the tumors in his liver and bones, and then to treat the eye tumor when the more serious ones are under control. The eye tumor to date is growing very slowly and is not affecting his vision yet.
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- March 26, 2013 at 8:12 pm
I'm sorry about my ignorant post about necessarily losing an eye to test for OM… I hadn't studied up on OM since the doctors had said he didn't have it. The plan for my dad is to get some type of systemic treatment to reduce the tumors in his liver and bones, and then to treat the eye tumor when the more serious ones are under control. The eye tumor to date is growing very slowly and is not affecting his vision yet.
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- March 28, 2013 at 7:36 pm
I guess because most of us are diagnosed with the OM first, we have the eye treated first – since it is the primary source for the cancer. But I wonder why, since the eye tumor will continue to spread it's cancer cells…it is not being treated immediately THEN deal with the systemic issues. Have you considered a second opinion with an ocular melanoma cancer specialist in addition to a specialists such as Dr. Sato who deals with both high risk OM patients in addtion to those whose OM has spread?
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- March 28, 2013 at 7:36 pm
I guess because most of us are diagnosed with the OM first, we have the eye treated first – since it is the primary source for the cancer. But I wonder why, since the eye tumor will continue to spread it's cancer cells…it is not being treated immediately THEN deal with the systemic issues. Have you considered a second opinion with an ocular melanoma cancer specialist in addition to a specialists such as Dr. Sato who deals with both high risk OM patients in addtion to those whose OM has spread?
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- March 28, 2013 at 7:36 pm
I guess because most of us are diagnosed with the OM first, we have the eye treated first – since it is the primary source for the cancer. But I wonder why, since the eye tumor will continue to spread it's cancer cells…it is not being treated immediately THEN deal with the systemic issues. Have you considered a second opinion with an ocular melanoma cancer specialist in addition to a specialists such as Dr. Sato who deals with both high risk OM patients in addtion to those whose OM has spread?
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- March 26, 2013 at 8:12 pm
I'm sorry about my ignorant post about necessarily losing an eye to test for OM… I hadn't studied up on OM since the doctors had said he didn't have it. The plan for my dad is to get some type of systemic treatment to reduce the tumors in his liver and bones, and then to treat the eye tumor when the more serious ones are under control. The eye tumor to date is growing very slowly and is not affecting his vision yet.
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