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- This topic has 15 replies, 4 voices, and was last updated 7 years, 8 months ago by
Buddy0513.
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- September 14, 2016 at 1:09 am
Hello everyone!
I am new to this forum and am posting on behalf of my mom since she isn't a fan of computers!
Anyway, it is a long story so I appreciate anyone who reads this.
Back in July of 2015, my mom had a vaginal polyp that was discovered upon post-menopausal bleeding. When it was removed and tested, it was positive for melanoma (no stage was given), which is apparently very rare. She went through surgial procedures to remove this polyp and was OK.
Fast forward to July 2016/beginning of August 2016, she had become very sick with symptoms similar to food poisoning. After going to the hospital, scans etc…they discovered a grapefruit size tumor on her ovary and smaller tumors throughout her abdomen region, nothing on any other organs (which was determined by a PET scan).
We were referred to an oncologist who gave the options of either ovarian cancer or melanoma, depending on the test results and biopsy. He also stated how he didn't see any of this being life-threatening since it has not spread to vital organs regardless of diagnosis. If she was to wait and avoid treatment it would catch up with her, but he tried to assure us it would be ok. At this time also, her CA-125 levels were 10x normal (about 390) and LDH was high as well (I cannot recall this off the top of my head). When the biopsy was completed, the results turned out to be stage IV melanoma and it was BRAF-negative.
When speaking with this same doctor, he did not refer us to a specialist (the hospital we are seeing does not have one apparently), he basically gave us the side effects of Keytruda and how poor it has of a performance (30% compared to 70% for the pill if she was BRAF-positive), and would not even provide a prognosis or even fall back on anything he had said at the previous appointment! After mentioning Keytruda, he didn't talk about trials either should she not react to the drug. They have not provided any support and have submitted everything for insurance to approve, but we are still waiting to start treatment (this has been going on over a month now). This doctor also failed to write the correct place they took the biopsy due to the reasoning of "handwriting was too hard to read"…We honestly feel they just see $$$ rather than looking at my mom as a patient.
We have decided to go for a second opinion as I have read here often on the site (with a melanoma specialist!). I guess my main question for you all is, what can I do to bring her spirits up? This has sounded like a death sentence to her and she is very down. I basically took a semester off of school and stopped my entire life to come help her, I told her I am not here to bury here I want to help anyway I can! We have not had any support since she was diagnosed (I have been sharing many stories from people on this website, especially the Charlie Stage IV roll call thread!), which has helped to some extent. Has anyone else here had any experience with melanoma on the ovary either? I haven't been able to find many stories similar to hers, all of the doctors she had seen are baffled which hasn't exactly been a great help either.
Thank you for reading, I appreciate any advice and support during this tough time.
Melissa
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- September 14, 2016 at 1:57 am
Hi Melissa,
First, thanks or being there for your Mom. She no doubt needs emotional support dealing with this diagnosis. Second, this is not a death sentence. There are many options for treatment from surgery, to radiation, and drug therapies with encouraging response rates. Right now you need to dump the current doc and absolutely get to a melanoma specialist,. That is defined by an oncologist who ONLY treats melanoma, and is most likely found at a large research oriented institution. This is non-negotiable and if travel is necessary then so be it.. On a final note, a mel expert knows mel does not follow the rules, and there is no part of the body that is off-limits. I too have a grapefruit sized tumor in an organ that is very rarely effected. The good news for Mom is once in the hands of a specialist, they will devise a plan of action which will relieve much of the anxiety that is present now.
Gary
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- September 14, 2016 at 1:57 am
Hi Melissa,
First, thanks or being there for your Mom. She no doubt needs emotional support dealing with this diagnosis. Second, this is not a death sentence. There are many options for treatment from surgery, to radiation, and drug therapies with encouraging response rates. Right now you need to dump the current doc and absolutely get to a melanoma specialist,. That is defined by an oncologist who ONLY treats melanoma, and is most likely found at a large research oriented institution. This is non-negotiable and if travel is necessary then so be it.. On a final note, a mel expert knows mel does not follow the rules, and there is no part of the body that is off-limits. I too have a grapefruit sized tumor in an organ that is very rarely effected. The good news for Mom is once in the hands of a specialist, they will devise a plan of action which will relieve much of the anxiety that is present now.
Gary
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- September 14, 2016 at 1:57 am
Hi Melissa,
First, thanks or being there for your Mom. She no doubt needs emotional support dealing with this diagnosis. Second, this is not a death sentence. There are many options for treatment from surgery, to radiation, and drug therapies with encouraging response rates. Right now you need to dump the current doc and absolutely get to a melanoma specialist,. That is defined by an oncologist who ONLY treats melanoma, and is most likely found at a large research oriented institution. This is non-negotiable and if travel is necessary then so be it.. On a final note, a mel expert knows mel does not follow the rules, and there is no part of the body that is off-limits. I too have a grapefruit sized tumor in an organ that is very rarely effected. The good news for Mom is once in the hands of a specialist, they will devise a plan of action which will relieve much of the anxiety that is present now.
Gary
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- September 14, 2016 at 1:54 pm
Hi Melissa, wow I'm sorry your family has been through so much recently. It's amazing how you are standing by your Mom.
In terms of resources, maybe try checking out the #Gyncsm community. They are a community of gynecologic cancer survivors, patient advocates, caregivers and health care providers. They have lots of resources listed on their website and a very active helpful community that might be useful to tap into to ask questions and find support as things go along with your mom.
While ovarian melanomas are certainly more rare than other types, this group might be able to point you in the direction of some information and resources.
The fact that you're getting a second opinion is fantastic. Stay strong and keep us posted here.
-Melody
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- September 14, 2016 at 1:54 pm
Hi Melissa, wow I'm sorry your family has been through so much recently. It's amazing how you are standing by your Mom.
In terms of resources, maybe try checking out the #Gyncsm community. They are a community of gynecologic cancer survivors, patient advocates, caregivers and health care providers. They have lots of resources listed on their website and a very active helpful community that might be useful to tap into to ask questions and find support as things go along with your mom.
While ovarian melanomas are certainly more rare than other types, this group might be able to point you in the direction of some information and resources.
The fact that you're getting a second opinion is fantastic. Stay strong and keep us posted here.
-Melody
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- September 14, 2016 at 1:54 pm
Hi Melissa, wow I'm sorry your family has been through so much recently. It's amazing how you are standing by your Mom.
In terms of resources, maybe try checking out the #Gyncsm community. They are a community of gynecologic cancer survivors, patient advocates, caregivers and health care providers. They have lots of resources listed on their website and a very active helpful community that might be useful to tap into to ask questions and find support as things go along with your mom.
While ovarian melanomas are certainly more rare than other types, this group might be able to point you in the direction of some information and resources.
The fact that you're getting a second opinion is fantastic. Stay strong and keep us posted here.
-Melody
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- September 14, 2016 at 4:13 pm
Hi,
Totally agree. Gets specialist and if possible one on the cutting edge doing research.
When you have confidence that your med team is knowledgeable and expert in the field it is so much easier to take their advice and relax a little bit in that you know you are getting the best chance of a response.
Both you and your Mom may have looked at the melanoma survival stats.
This is not generally helpful as they reflect the outcomes from treatments used 5 or 10 years ago and the treatment landscape has changed beyond recognition in this time and deaths from any cause tend to be included. Also your response for your melanoma depends on personalised factors so the averages may not hold for your melanoma.
I ' m in the UK and our Nice guidelines for melanoma recommend managing vitamin d levels.
You might want to look at info from others with vulval/ mucosal melanoma as they may have experience your mum can identify with.
Finally, congratulations on being such a caring and suportive daughter. It is not easy navigating your way through the decisions and you mom is blessed to have your support. Diagnosis put me into a state of shock and initial disbelief…then I had surgery and grieved for the physical changes of lymphoedema and also for the loss of the false sense of security I had about it not being my turn for death for many years. But really, we all live with uncertain futures.
Hope all goies well for you and your mum
Am the best
Deb
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- September 14, 2016 at 4:13 pm
Hi,
Totally agree. Gets specialist and if possible one on the cutting edge doing research.
When you have confidence that your med team is knowledgeable and expert in the field it is so much easier to take their advice and relax a little bit in that you know you are getting the best chance of a response.
Both you and your Mom may have looked at the melanoma survival stats.
This is not generally helpful as they reflect the outcomes from treatments used 5 or 10 years ago and the treatment landscape has changed beyond recognition in this time and deaths from any cause tend to be included. Also your response for your melanoma depends on personalised factors so the averages may not hold for your melanoma.
I ' m in the UK and our Nice guidelines for melanoma recommend managing vitamin d levels.
You might want to look at info from others with vulval/ mucosal melanoma as they may have experience your mum can identify with.
Finally, congratulations on being such a caring and suportive daughter. It is not easy navigating your way through the decisions and you mom is blessed to have your support. Diagnosis put me into a state of shock and initial disbelief…then I had surgery and grieved for the physical changes of lymphoedema and also for the loss of the false sense of security I had about it not being my turn for death for many years. But really, we all live with uncertain futures.
Hope all goies well for you and your mum
Am the best
Deb
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- September 14, 2016 at 4:13 pm
Hi,
Totally agree. Gets specialist and if possible one on the cutting edge doing research.
When you have confidence that your med team is knowledgeable and expert in the field it is so much easier to take their advice and relax a little bit in that you know you are getting the best chance of a response.
Both you and your Mom may have looked at the melanoma survival stats.
This is not generally helpful as they reflect the outcomes from treatments used 5 or 10 years ago and the treatment landscape has changed beyond recognition in this time and deaths from any cause tend to be included. Also your response for your melanoma depends on personalised factors so the averages may not hold for your melanoma.
I ' m in the UK and our Nice guidelines for melanoma recommend managing vitamin d levels.
You might want to look at info from others with vulval/ mucosal melanoma as they may have experience your mum can identify with.
Finally, congratulations on being such a caring and suportive daughter. It is not easy navigating your way through the decisions and you mom is blessed to have your support. Diagnosis put me into a state of shock and initial disbelief…then I had surgery and grieved for the physical changes of lymphoedema and also for the loss of the false sense of security I had about it not being my turn for death for many years. But really, we all live with uncertain futures.
Hope all goies well for you and your mum
Am the best
Deb
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- September 17, 2016 at 10:51 pm
Thank you for the replies everyone! Sorry about the late response, has been hectic taking care of mom and now currently fighting with the first hospital we were at (they cancelled an appointment last minute on us, aren't sending papers to other Dr's etc..)
I really appreciate everyones response. I have been sharing this thread, as well as others with her to keep her spirits up. We are hoping to get more answers this coming week when we have our appointment with the second opinion Dr. We are just praying for a treatment to start/good news, she has been in such pain with the location of the tumor and we are always playing the waiting game which is no fun!
Again, thank you for the responses, the love, strength and support that is on this website is absolutely amazing and I know it will help my mom and I get through this.
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- September 17, 2016 at 10:51 pm
Thank you for the replies everyone! Sorry about the late response, has been hectic taking care of mom and now currently fighting with the first hospital we were at (they cancelled an appointment last minute on us, aren't sending papers to other Dr's etc..)
I really appreciate everyones response. I have been sharing this thread, as well as others with her to keep her spirits up. We are hoping to get more answers this coming week when we have our appointment with the second opinion Dr. We are just praying for a treatment to start/good news, she has been in such pain with the location of the tumor and we are always playing the waiting game which is no fun!
Again, thank you for the responses, the love, strength and support that is on this website is absolutely amazing and I know it will help my mom and I get through this.
-
- September 17, 2016 at 10:51 pm
Thank you for the replies everyone! Sorry about the late response, has been hectic taking care of mom and now currently fighting with the first hospital we were at (they cancelled an appointment last minute on us, aren't sending papers to other Dr's etc..)
I really appreciate everyones response. I have been sharing this thread, as well as others with her to keep her spirits up. We are hoping to get more answers this coming week when we have our appointment with the second opinion Dr. We are just praying for a treatment to start/good news, she has been in such pain with the location of the tumor and we are always playing the waiting game which is no fun!
Again, thank you for the responses, the love, strength and support that is on this website is absolutely amazing and I know it will help my mom and I get through this.
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