› Forums › Cutaneous Melanoma Community › Help with Pathology
- This topic has 24 replies, 4 voices, and was last updated 10 years, 2 months ago by
KatB.
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- March 16, 2014 at 1:59 am
Hello Everyone,
I apologize in advance for the length of this initial post. I'm sad to be back at this website – the last time I was here was when it was the old-style forum –I see a lot has changed since then.
My husband (now age 65) was diagnosed Stage 2 back in 2008, 1.24mm ulcerated on his right arm. He had a WLE and SLNB, and a couple months later another WLE of the same location since the original had extended to margins. After that though, no further treatment was deemed required and we went about our life. He went to his 6 month appointments for scans and blood work which was eventually pushed out to yearly, with no problems at all. After his last visit in October 2013 with no new issues, we walked out and I felt relieved to have made it past the 5 year mark.
Early in February my husband began being less talkative to me. I had been working in another state since early January (we are moving there soon) and he had also started a new job, so I just attributed it to him being tired from his new job along with the stress of having to live apart for a little while. I asked many times and he insisted nothing was wrong, he just didn't feel like talking. This continued until February 20th when he finally admitted to me that he was having a problem speaking – he couldn’t get his words out – he would just lose his words and couldn't finish his sentences. (He had Expressive Aphasia, we later learned.) It took several more days to convince him to go to the doctor.
On February 24th, he went to his family doctor who immediately sent him to the hospital. He was admitted and I started the 5 hour drive home. Along the way, I received a call from his doctor telling me that he had a brain tumor, 3.1cm with swelling the size of a lemon around it. Two days later, he underwent surgery to remove the tumor, which we were told was in a location that was at least “easy” to get to. The surgery went very quickly and we were told the tumor came out in one whole piece. Scans (CT/MRI) did not find any other tumors in his body.
He was in the hospital for 7 days and rehab for 3 more and is now back home and almost back to “normal”, except for a variety of bad side effects from the Decadron that he still has to take (steroid which reduces the swelling in his brain) and the 8” scar on his newly bald head!
Pathology revealed that it is melanoma. It states the following (hopefully someone can help me interpret this):
GROSS DESCRIPTION:
A. Received for evaluation, labeled “Brain Tumor FS”, are fragments of pinkish-red tissue, measuring up to 5mm in aggregate dimensions. A portion of this is smeared and the remainder is frozen.
FROZEN SECTION DIAGNOSIS:
A. Brain Tissue, Surgical Biopsy: Cellular Spindle Cell Lesion Await Permanent Section Evaluation.
B. The second specimen, labeled “Brain Tumor/Permanent”, the second specimen on gross evaluation measures up to 40 x 32 x 15 mm in greatest dimensions. One is a more solid larger piece. This is cross sectioned and submitted for review in cassette “B1”. On sectioning, this has a grayish color. Multiple smaller fragments of gray appearing tissue are also received; remainder of the tissue is placed back in formalin solution.
MICROSCOPIC DESCRIPTION:
A. Examination of the previously prepared frozen section slides, and then the permanent section material demonstrates the presence of a spindle cell lesion, with limited epithelioid features, and without large numbers of visible mitotic figures. Scattered lymphoid cells are seen, becoming quite pronounced locally within adjacent connective tissue.
B. Examination of multiple sections of the additionally resected material reveals a similar pattern. In places, there is a relatively prominent number of chronic inflammatory cells seen in conjunction with the supporting stroma. In block “B1”, there appears to be dark brown pigment present in conjunction with tumor as well, some of which appears to be actually within neoplastic cells. This lesion has been evaluated by immunoperoxidase studies. It marks strongly for melan-A and HMB-45. Ki-67 reveals profound nuclear marking in portions of the neoplasm.
MICROSCOPIC DIAGNOSIS:
A. Brain Tissue, Left Frontal, Surgical Biopsy: Hypercellular Spindle and Limited Epithelioid Cell Neoplasm.
B. Brain Tissue, Left Frontal Lobe, Surgical Resection: Metastatic Melanoma.
COMMENT: This patient has a history of cutaneous melanoma removed from one arm several years ago. The entire lesion has a spindle/epithelioid appearance, with the epithelioid area occasionally showing prominent nucleoli. It marks strongly for melan-A and HMB-45, supporting the diagnosis of metastatic malignant melanoma. In part “B”, there are a significant number of mitotic figures identified.
(End of Pathology)
Any help understanding all of that would be appreciated! Is there any information there that that seems positive? Or negative? As hard as it is sometimes to research this topic, learning all I can is the best way I know how to cope, even the bad parts. My husband doesn’t use the internet at all so all he knows at this point is that it is a serious progression of the disease. He leaves the internet scouring/obsessing to me.
This surgery/pathology was done at our local hospital. He has an appointment on Thursday with his regular oncologist (a specialist at a comp. cancer center a little over an hour from where we live) to discuss all of this. I actually have his slides and will deliver them, along with all of the scans, on Monday so they can do their own review ahead of time.
So another question I have is what kind of treatment options (if any) might we expect he be given? I've been reading about the new drugs now available, but I'm not sure these are right for his situation since the entire tumor was removed. A family member who is an expert in (general) oncology said that he would probably need whole brain radiation.
Thank you all again for taking the time to read all of this!
- Replies
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- March 16, 2014 at 4:13 pm
Dear KatB,
I am so sorry for this turn of events, especially just after you thought you had reached the "magic" 5 year milestone. Melanoma often violates that rule. To adddress the brain met issue: It is good that the tumor is resected. Depending on the location, there can be return of some or all of function after the swelling subsides.The next concern is the occurence of relapse in the site of the initial tumor or at other (what are called "distant") brain sites. There is a strong possibility of both of those events. In the past whole brain radiation had been the usual treatment recommended. Unfortunately, it is not effective in melanoma. Currently there is strong evidence that Stereotactic Radiosurgery (SRS) is good at controlling local disease. Some of the new systemic treatments for melanoma also treat brain mets. This includes ipilimumab and dabrafenib. To know if dabrafenib (a BRAF inhibitor) will help, you need to know the BRAF status of the tumor. If they did not test it already they still can on the tissue they have. I would get that process started as quickly as possible. It is important to get treatment started while there is as little additional melanoma present as you can.
You need to know the status of the rest of the body. Has your husband had a full body CT and or PET/CT scan post discovery of the brain met? Seek out an oncolgist trained and experienced in the treatment of melanoma. Do not be shy about asking questions and seeking second opinions. Clinical trials are also a way to obtain access to melanoma experts and advanced treatments. It can be an arduous process but with the help of the melanoma community ( this forum, the Melanoma International Forum, and blogs) it can be done. One good blog with specific information on brain mets is http://chaoticallypreciselifeloveandmelanoma.blogspot.com/
There is good general information here as well as specific articles that may help you.
Good Luck. Keep posting.
-
- March 16, 2014 at 4:13 pm
Dear KatB,
I am so sorry for this turn of events, especially just after you thought you had reached the "magic" 5 year milestone. Melanoma often violates that rule. To adddress the brain met issue: It is good that the tumor is resected. Depending on the location, there can be return of some or all of function after the swelling subsides.The next concern is the occurence of relapse in the site of the initial tumor or at other (what are called "distant") brain sites. There is a strong possibility of both of those events. In the past whole brain radiation had been the usual treatment recommended. Unfortunately, it is not effective in melanoma. Currently there is strong evidence that Stereotactic Radiosurgery (SRS) is good at controlling local disease. Some of the new systemic treatments for melanoma also treat brain mets. This includes ipilimumab and dabrafenib. To know if dabrafenib (a BRAF inhibitor) will help, you need to know the BRAF status of the tumor. If they did not test it already they still can on the tissue they have. I would get that process started as quickly as possible. It is important to get treatment started while there is as little additional melanoma present as you can.
You need to know the status of the rest of the body. Has your husband had a full body CT and or PET/CT scan post discovery of the brain met? Seek out an oncolgist trained and experienced in the treatment of melanoma. Do not be shy about asking questions and seeking second opinions. Clinical trials are also a way to obtain access to melanoma experts and advanced treatments. It can be an arduous process but with the help of the melanoma community ( this forum, the Melanoma International Forum, and blogs) it can be done. One good blog with specific information on brain mets is http://chaoticallypreciselifeloveandmelanoma.blogspot.com/
There is good general information here as well as specific articles that may help you.
Good Luck. Keep posting.
-
- March 16, 2014 at 11:52 pm
Hi BMorris,
Thank you for your comments.
Everything I'm reading about SRS is that is it used when surgery is not an option. Since his tumor was removed, would this still be a useful treatment for him? Would they just direct it at the area where the tumor had been? Could this also help prevent distant brain sites from occurring?
On the same note, everything I read about ipi and dabrafenib seems like it is aimed at people who cannot have surgery. Would these drugs also help someone like my husband whose tumor was removed Would it help prevent new sites or relapse in the initial site?
Sorry for so many questions and if they are dumb. I just want to be prepared to discuss these options on Thursday!
His pathology report specifically mentioned that they did not yet test for BRAF. I will ask about this Thursday.
He did have a full body CT on the same day that the brain tumor was discovered (two days before the surgery). I really don't think that hospital has PET available, but where we are going Thursday does. I will ask about this if it isn't already brought up.
Thank you for the link to the blog – I will be checking it out!
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- March 17, 2014 at 3:03 am
Dear KatB,
If your husband has no other mets at this time, after the brain met was removed, then he is a Stage 4 NED-resected patient; meaning he has no other detectable disease. Some choose only observation at this point. The problem is that he remains at high risk for recurrence in the brain as well as other sites. To complicate the issue there are no approved preventative medicines in this circumstance.This is known as adjuvant therapy. You are left in a state of limbo. It is even hard to find clinical trials that will accept patients in this circumstance. I know of one at Moffitt Cancer Center in Tampa Florida: A phase 1 trial of a vaccine combining multiple class 1 peptides and montanide ISA 51 VG with escalating doses of anti-PD1 antibody BMS-936558 (now known as Nivolumab) for patients with resected stages IIIC/IV melanoma, NCI protocol P-8316). However, it is a new arm, recently added to that study in which no vaccines will be given and it is actually a combination of ipi and the anti-PD1 drug. Trials are changeable like that. There is another trial: Ipilimumab or High-Dose Interferon Alfa-2b in Treating patients with High Risk Stage III-IV Melanoma that has been Removed by Surgery. I am not sure of all the locations for this one. There may be others. It would be good to address the whole issue as well as the specifics with your consultant on Thursday. There is no queston too dumb to ask.
Yours
-
- March 17, 2014 at 4:03 am
I found information on the second trial you mentioned: http://www.cancer.gov/clinicaltrials/search/view?cdrid=692568&version=HealthProfessional
His cancer center is listed as a trial site for this one, so perhaps we will discuss this on Thursday as an option.
Is the interferon Alfa 2b in this trial the same interferon that most people around here seem to want to avoid these days?
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- March 17, 2014 at 4:25 am
Dear KatB
Sounds like you are learning a lot quickly. Your husband is lucky to have you on his side. Yes, the interferon is the drug that has little effect. The ipilimumab(yervoy) is the new immunotherapy for which there is some data showing good effect as an adjunvant. It is still worth investigating the clinical trial. In the event you are assigned to the interferon arm you can drop out of the trial if you wish to. The ipilimumab is available commercially, but may not be covered by insurance in this circumstance.
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- March 17, 2014 at 4:25 am
Dear KatB
Sounds like you are learning a lot quickly. Your husband is lucky to have you on his side. Yes, the interferon is the drug that has little effect. The ipilimumab(yervoy) is the new immunotherapy for which there is some data showing good effect as an adjunvant. It is still worth investigating the clinical trial. In the event you are assigned to the interferon arm you can drop out of the trial if you wish to. The ipilimumab is available commercially, but may not be covered by insurance in this circumstance.
-
- March 17, 2014 at 4:25 am
Dear KatB
Sounds like you are learning a lot quickly. Your husband is lucky to have you on his side. Yes, the interferon is the drug that has little effect. The ipilimumab(yervoy) is the new immunotherapy for which there is some data showing good effect as an adjunvant. It is still worth investigating the clinical trial. In the event you are assigned to the interferon arm you can drop out of the trial if you wish to. The ipilimumab is available commercially, but may not be covered by insurance in this circumstance.
-
- March 17, 2014 at 5:29 pm
Kat, as Brent suggested, being Stage IV NED (no evidence of disease) is a bitter-sweet place to be.
The "sweet" part is that you are delighted that there was only one tumor and that it was surgically removed. Hooray! And some people seem to go on that way forever– either no more tumors or one every few years that can be surgically removed.
The "bitter" part is that there are very few treatment options available to NED patients. Most clinical trials require the patient to have at least one sizeable tumor so that they can measure it to see if their treatment is working. In addition, most clinical trials eliminate people with active brain tumors or have a 4-week or 8-week waiting period if the brain tumors have been treated to make sure that the brain is stable.
If you search this forum for the word "finder" you will see a couple of recent threads talking about how to find clinical trials that are appropriate for you. It's not easy, but it can be done. When you have a couple of ideas, then you can discuss them with your husband's doctors and decide how to proceed.
It's great that you are going to a melanoma specialist this week. Your husband might qualify for Yervoy and he might qualify for one or more clinical trials. Of couse, you want the BRAF result as soon as possible, but a BRAF inhibitor would probably not be your first choice at this early point, anyway. That would be for the future. And whole brain radiation is seldom used as a first-line treatment anymore. Craniotomy (as your husband had) and/or SRS is usually preferred now. Many people get SRS 3 or more times to keep brain mets in check.
-
- March 17, 2014 at 5:29 pm
Kat, as Brent suggested, being Stage IV NED (no evidence of disease) is a bitter-sweet place to be.
The "sweet" part is that you are delighted that there was only one tumor and that it was surgically removed. Hooray! And some people seem to go on that way forever– either no more tumors or one every few years that can be surgically removed.
The "bitter" part is that there are very few treatment options available to NED patients. Most clinical trials require the patient to have at least one sizeable tumor so that they can measure it to see if their treatment is working. In addition, most clinical trials eliminate people with active brain tumors or have a 4-week or 8-week waiting period if the brain tumors have been treated to make sure that the brain is stable.
If you search this forum for the word "finder" you will see a couple of recent threads talking about how to find clinical trials that are appropriate for you. It's not easy, but it can be done. When you have a couple of ideas, then you can discuss them with your husband's doctors and decide how to proceed.
It's great that you are going to a melanoma specialist this week. Your husband might qualify for Yervoy and he might qualify for one or more clinical trials. Of couse, you want the BRAF result as soon as possible, but a BRAF inhibitor would probably not be your first choice at this early point, anyway. That would be for the future. And whole brain radiation is seldom used as a first-line treatment anymore. Craniotomy (as your husband had) and/or SRS is usually preferred now. Many people get SRS 3 or more times to keep brain mets in check.
-
- March 17, 2014 at 5:29 pm
Kat, as Brent suggested, being Stage IV NED (no evidence of disease) is a bitter-sweet place to be.
The "sweet" part is that you are delighted that there was only one tumor and that it was surgically removed. Hooray! And some people seem to go on that way forever– either no more tumors or one every few years that can be surgically removed.
The "bitter" part is that there are very few treatment options available to NED patients. Most clinical trials require the patient to have at least one sizeable tumor so that they can measure it to see if their treatment is working. In addition, most clinical trials eliminate people with active brain tumors or have a 4-week or 8-week waiting period if the brain tumors have been treated to make sure that the brain is stable.
If you search this forum for the word "finder" you will see a couple of recent threads talking about how to find clinical trials that are appropriate for you. It's not easy, but it can be done. When you have a couple of ideas, then you can discuss them with your husband's doctors and decide how to proceed.
It's great that you are going to a melanoma specialist this week. Your husband might qualify for Yervoy and he might qualify for one or more clinical trials. Of couse, you want the BRAF result as soon as possible, but a BRAF inhibitor would probably not be your first choice at this early point, anyway. That would be for the future. And whole brain radiation is seldom used as a first-line treatment anymore. Craniotomy (as your husband had) and/or SRS is usually preferred now. Many people get SRS 3 or more times to keep brain mets in check.
-
- March 17, 2014 at 4:03 am
I found information on the second trial you mentioned: http://www.cancer.gov/clinicaltrials/search/view?cdrid=692568&version=HealthProfessional
His cancer center is listed as a trial site for this one, so perhaps we will discuss this on Thursday as an option.
Is the interferon Alfa 2b in this trial the same interferon that most people around here seem to want to avoid these days?
-
- March 17, 2014 at 4:03 am
I found information on the second trial you mentioned: http://www.cancer.gov/clinicaltrials/search/view?cdrid=692568&version=HealthProfessional
His cancer center is listed as a trial site for this one, so perhaps we will discuss this on Thursday as an option.
Is the interferon Alfa 2b in this trial the same interferon that most people around here seem to want to avoid these days?
-
- March 17, 2014 at 7:10 pm
There have been recent discussions about the Interferon vs Ipi (for resected stage IIIB/ IIIC/ IV) trial. See Stage IIIB + lymph nodes what now discussion for some more information. .If you read through the Chaotically Precise blog you will find some discussion of the efficacy of Ipilimumab + radiation in Brain mets and some more info on the adjuvant arm of the Nivo trial at Moffit. It's a great blog!
Kate
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- March 17, 2014 at 7:10 pm
There have been recent discussions about the Interferon vs Ipi (for resected stage IIIB/ IIIC/ IV) trial. See Stage IIIB + lymph nodes what now discussion for some more information. .If you read through the Chaotically Precise blog you will find some discussion of the efficacy of Ipilimumab + radiation in Brain mets and some more info on the adjuvant arm of the Nivo trial at Moffit. It's a great blog!
Kate
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- March 18, 2014 at 3:53 pm
Thank you guys for your additional comments and recommendations!
I'll let you know what his oncologist says after our Thursday appointment. We are also fixing to move to South Carolina so we will get a second opinion from whoever his new oncologist will be over there.
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- March 18, 2014 at 3:53 pm
Thank you guys for your additional comments and recommendations!
I'll let you know what his oncologist says after our Thursday appointment. We are also fixing to move to South Carolina so we will get a second opinion from whoever his new oncologist will be over there.
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- March 18, 2014 at 3:53 pm
Thank you guys for your additional comments and recommendations!
I'll let you know what his oncologist says after our Thursday appointment. We are also fixing to move to South Carolina so we will get a second opinion from whoever his new oncologist will be over there.
-
- March 17, 2014 at 7:10 pm
There have been recent discussions about the Interferon vs Ipi (for resected stage IIIB/ IIIC/ IV) trial. See Stage IIIB + lymph nodes what now discussion for some more information. .If you read through the Chaotically Precise blog you will find some discussion of the efficacy of Ipilimumab + radiation in Brain mets and some more info on the adjuvant arm of the Nivo trial at Moffit. It's a great blog!
Kate
-
- March 17, 2014 at 3:03 am
Dear KatB,
If your husband has no other mets at this time, after the brain met was removed, then he is a Stage 4 NED-resected patient; meaning he has no other detectable disease. Some choose only observation at this point. The problem is that he remains at high risk for recurrence in the brain as well as other sites. To complicate the issue there are no approved preventative medicines in this circumstance.This is known as adjuvant therapy. You are left in a state of limbo. It is even hard to find clinical trials that will accept patients in this circumstance. I know of one at Moffitt Cancer Center in Tampa Florida: A phase 1 trial of a vaccine combining multiple class 1 peptides and montanide ISA 51 VG with escalating doses of anti-PD1 antibody BMS-936558 (now known as Nivolumab) for patients with resected stages IIIC/IV melanoma, NCI protocol P-8316). However, it is a new arm, recently added to that study in which no vaccines will be given and it is actually a combination of ipi and the anti-PD1 drug. Trials are changeable like that. There is another trial: Ipilimumab or High-Dose Interferon Alfa-2b in Treating patients with High Risk Stage III-IV Melanoma that has been Removed by Surgery. I am not sure of all the locations for this one. There may be others. It would be good to address the whole issue as well as the specifics with your consultant on Thursday. There is no queston too dumb to ask.
Yours
-
- March 17, 2014 at 3:03 am
Dear KatB,
If your husband has no other mets at this time, after the brain met was removed, then he is a Stage 4 NED-resected patient; meaning he has no other detectable disease. Some choose only observation at this point. The problem is that he remains at high risk for recurrence in the brain as well as other sites. To complicate the issue there are no approved preventative medicines in this circumstance.This is known as adjuvant therapy. You are left in a state of limbo. It is even hard to find clinical trials that will accept patients in this circumstance. I know of one at Moffitt Cancer Center in Tampa Florida: A phase 1 trial of a vaccine combining multiple class 1 peptides and montanide ISA 51 VG with escalating doses of anti-PD1 antibody BMS-936558 (now known as Nivolumab) for patients with resected stages IIIC/IV melanoma, NCI protocol P-8316). However, it is a new arm, recently added to that study in which no vaccines will be given and it is actually a combination of ipi and the anti-PD1 drug. Trials are changeable like that. There is another trial: Ipilimumab or High-Dose Interferon Alfa-2b in Treating patients with High Risk Stage III-IV Melanoma that has been Removed by Surgery. I am not sure of all the locations for this one. There may be others. It would be good to address the whole issue as well as the specifics with your consultant on Thursday. There is no queston too dumb to ask.
Yours
-
- March 16, 2014 at 11:52 pm
Hi BMorris,
Thank you for your comments.
Everything I'm reading about SRS is that is it used when surgery is not an option. Since his tumor was removed, would this still be a useful treatment for him? Would they just direct it at the area where the tumor had been? Could this also help prevent distant brain sites from occurring?
On the same note, everything I read about ipi and dabrafenib seems like it is aimed at people who cannot have surgery. Would these drugs also help someone like my husband whose tumor was removed Would it help prevent new sites or relapse in the initial site?
Sorry for so many questions and if they are dumb. I just want to be prepared to discuss these options on Thursday!
His pathology report specifically mentioned that they did not yet test for BRAF. I will ask about this Thursday.
He did have a full body CT on the same day that the brain tumor was discovered (two days before the surgery). I really don't think that hospital has PET available, but where we are going Thursday does. I will ask about this if it isn't already brought up.
Thank you for the link to the blog – I will be checking it out!
-
- March 16, 2014 at 11:52 pm
Hi BMorris,
Thank you for your comments.
Everything I'm reading about SRS is that is it used when surgery is not an option. Since his tumor was removed, would this still be a useful treatment for him? Would they just direct it at the area where the tumor had been? Could this also help prevent distant brain sites from occurring?
On the same note, everything I read about ipi and dabrafenib seems like it is aimed at people who cannot have surgery. Would these drugs also help someone like my husband whose tumor was removed Would it help prevent new sites or relapse in the initial site?
Sorry for so many questions and if they are dumb. I just want to be prepared to discuss these options on Thursday!
His pathology report specifically mentioned that they did not yet test for BRAF. I will ask about this Thursday.
He did have a full body CT on the same day that the brain tumor was discovered (two days before the surgery). I really don't think that hospital has PET available, but where we are going Thursday does. I will ask about this if it isn't already brought up.
Thank you for the link to the blog – I will be checking it out!
-
- March 16, 2014 at 4:13 pm
Dear KatB,
I am so sorry for this turn of events, especially just after you thought you had reached the "magic" 5 year milestone. Melanoma often violates that rule. To adddress the brain met issue: It is good that the tumor is resected. Depending on the location, there can be return of some or all of function after the swelling subsides.The next concern is the occurence of relapse in the site of the initial tumor or at other (what are called "distant") brain sites. There is a strong possibility of both of those events. In the past whole brain radiation had been the usual treatment recommended. Unfortunately, it is not effective in melanoma. Currently there is strong evidence that Stereotactic Radiosurgery (SRS) is good at controlling local disease. Some of the new systemic treatments for melanoma also treat brain mets. This includes ipilimumab and dabrafenib. To know if dabrafenib (a BRAF inhibitor) will help, you need to know the BRAF status of the tumor. If they did not test it already they still can on the tissue they have. I would get that process started as quickly as possible. It is important to get treatment started while there is as little additional melanoma present as you can.
You need to know the status of the rest of the body. Has your husband had a full body CT and or PET/CT scan post discovery of the brain met? Seek out an oncolgist trained and experienced in the treatment of melanoma. Do not be shy about asking questions and seeking second opinions. Clinical trials are also a way to obtain access to melanoma experts and advanced treatments. It can be an arduous process but with the help of the melanoma community ( this forum, the Melanoma International Forum, and blogs) it can be done. One good blog with specific information on brain mets is http://chaoticallypreciselifeloveandmelanoma.blogspot.com/
There is good general information here as well as specific articles that may help you.
Good Luck. Keep posting.
-
Tagged: cutaneous melanoma
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