› Forums › General Melanoma Community › If your melanoma has metastasized
- This topic has 18 replies, 3 voices, and was last updated 10 years, 11 months ago by
arthurjedi007.
- Post
-
- July 2, 2014 at 10:45 pm
Hi,
As someone who's been dealing with vulvar melanoma since May of last year, told my prognosis is poor (though determined not to live my life in fear based on statistics), I sometimes wonder what the surgeon/oncologist mean when they say come in if you experience anything unusual. I wonder this because my own melanoma was essentially asymptomatic and hidden so well, I only noticed a small amount of itching, and by that time it had already grown to 2 x 3 cm. If your melanoma has metastasized, I was wondering today if you would mind sharing some of your experiences with this. If the metastasis is internal, ARE there unusual symptoms?
What stage was your original (primary) melanoma? Were lymph nodes involved? How long between the original diagnosis and the spread of the melanoma?
Most of all, I am wondering what kind of symptoms you had developed, if any, when the metastasis was discovered? If internal, were you symptom-free?
If not, did you develop pain in a certain area? Headaches, body aches, some other unusual symptoms?
Or was it found on routine PET-CT screening? Was it found accidentally on some other diagnostic test?
Based on my own experience, it is hard to imagine that if my melanoma progressed, I would have any recognizable symptoms at all, at least not right away. Or would I? It's kind of unnerving.
Cheri
- Replies
-
-
- July 2, 2014 at 11:00 pm
I had a large mole removed in Nov 2012 which was melanoma. It was ulcerated , so a sentinel node biopsy was done and everything was clear.
At 6 month appt, everything still looked good with normal bloodwork and no symptoms.
at 1 year point, I pulled a muscle in my back at work and had 3 weeks of therapy. I told the therapist that my back pain below the muscle injury was getting worse with therapy.
She sent me for an MRI where they found metastisis in the spine.
I may have had some fatigue previously, but not much else for symptoms. 3 months later, on second pet scan there were metastises on liver , lung , and pancreas. No symptoms for that either.
It seems that melanoma is a wild beast with stories of protective protein shields to protect it from the immune system. Other research shows the ability of the cancer to mutate and find different pathways to attack if inhibitors are successful at blocking one pathway.
It is like a horror movie I watched as a kid ! And its after me !
I think of a name for the monster though. Any ideas ?
shane
-
- July 2, 2014 at 11:00 pm
I had a large mole removed in Nov 2012 which was melanoma. It was ulcerated , so a sentinel node biopsy was done and everything was clear.
At 6 month appt, everything still looked good with normal bloodwork and no symptoms.
at 1 year point, I pulled a muscle in my back at work and had 3 weeks of therapy. I told the therapist that my back pain below the muscle injury was getting worse with therapy.
She sent me for an MRI where they found metastisis in the spine.
I may have had some fatigue previously, but not much else for symptoms. 3 months later, on second pet scan there were metastises on liver , lung , and pancreas. No symptoms for that either.
It seems that melanoma is a wild beast with stories of protective protein shields to protect it from the immune system. Other research shows the ability of the cancer to mutate and find different pathways to attack if inhibitors are successful at blocking one pathway.
It is like a horror movie I watched as a kid ! And its after me !
I think of a name for the monster though. Any ideas ?
shane
-
- July 2, 2014 at 11:00 pm
I had a large mole removed in Nov 2012 which was melanoma. It was ulcerated , so a sentinel node biopsy was done and everything was clear.
At 6 month appt, everything still looked good with normal bloodwork and no symptoms.
at 1 year point, I pulled a muscle in my back at work and had 3 weeks of therapy. I told the therapist that my back pain below the muscle injury was getting worse with therapy.
She sent me for an MRI where they found metastisis in the spine.
I may have had some fatigue previously, but not much else for symptoms. 3 months later, on second pet scan there were metastises on liver , lung , and pancreas. No symptoms for that either.
It seems that melanoma is a wild beast with stories of protective protein shields to protect it from the immune system. Other research shows the ability of the cancer to mutate and find different pathways to attack if inhibitors are successful at blocking one pathway.
It is like a horror movie I watched as a kid ! And its after me !
I think of a name for the monster though. Any ideas ?
shane
-
- July 2, 2014 at 11:01 pm
I had a large mole removed in Nov 2012 which was melanoma. It was ulcerated , so a sentinel node biopsy was done and everything was clear.
At 6 month appt, everything still looked good with normal bloodwork and no symptoms.
at 1 year point, I pulled a muscle in my back at work and had 3 weeks of therapy. I told the therapist that my back pain below the muscle injury was getting worse with therapy.
She sent me for an MRI where they found metastisis in the spine.
I may have had some fatigue previously, but not much else for symptoms. 3 months later, on second pet scan there were metastises on liver , lung , and pancreas. No symptoms for that either.
It seems that melanoma is a wild beast with stories of protective protein shields to protect it from the immune system. Other research shows the ability of the cancer to mutate and find different pathways to attack if inhibitors are successful at blocking one pathway.
It is like a horror movie I watched as a kid ! And its after me !
I cant think of a name for the monster though. Any ideas ?
shane
-
- July 2, 2014 at 11:01 pm
I had a large mole removed in Nov 2012 which was melanoma. It was ulcerated , so a sentinel node biopsy was done and everything was clear.
At 6 month appt, everything still looked good with normal bloodwork and no symptoms.
at 1 year point, I pulled a muscle in my back at work and had 3 weeks of therapy. I told the therapist that my back pain below the muscle injury was getting worse with therapy.
She sent me for an MRI where they found metastisis in the spine.
I may have had some fatigue previously, but not much else for symptoms. 3 months later, on second pet scan there were metastises on liver , lung , and pancreas. No symptoms for that either.
It seems that melanoma is a wild beast with stories of protective protein shields to protect it from the immune system. Other research shows the ability of the cancer to mutate and find different pathways to attack if inhibitors are successful at blocking one pathway.
It is like a horror movie I watched as a kid ! And its after me !
I cant think of a name for the monster though. Any ideas ?
shane
-
- July 2, 2014 at 11:01 pm
I had a large mole removed in Nov 2012 which was melanoma. It was ulcerated , so a sentinel node biopsy was done and everything was clear.
At 6 month appt, everything still looked good with normal bloodwork and no symptoms.
at 1 year point, I pulled a muscle in my back at work and had 3 weeks of therapy. I told the therapist that my back pain below the muscle injury was getting worse with therapy.
She sent me for an MRI where they found metastisis in the spine.
I may have had some fatigue previously, but not much else for symptoms. 3 months later, on second pet scan there were metastises on liver , lung , and pancreas. No symptoms for that either.
It seems that melanoma is a wild beast with stories of protective protein shields to protect it from the immune system. Other research shows the ability of the cancer to mutate and find different pathways to attack if inhibitors are successful at blocking one pathway.
It is like a horror movie I watched as a kid ! And its after me !
I cant think of a name for the monster though. Any ideas ?
shane
-
- July 3, 2014 at 1:33 am
Shane, it really does seem like a monster.
Teochasse, my melanoma was approx 1 mm and showed signs of regression. It could have been there for a long time too. I had no symptoms until the last few weeks before I finally discovered it, and that was just a very slight itching. My treatment was a right-sided hemivulvectomy, and then 5 months later we found that I had melanoma in situ on the other side, so in total I have had 3 vulvar surgeries since May 2013, with bilateral sentinel lymph nodes biopsied, which were clear.
Thanks both of you!
Cheri
-
- July 3, 2014 at 1:33 am
Shane, it really does seem like a monster.
Teochasse, my melanoma was approx 1 mm and showed signs of regression. It could have been there for a long time too. I had no symptoms until the last few weeks before I finally discovered it, and that was just a very slight itching. My treatment was a right-sided hemivulvectomy, and then 5 months later we found that I had melanoma in situ on the other side, so in total I have had 3 vulvar surgeries since May 2013, with bilateral sentinel lymph nodes biopsied, which were clear.
Thanks both of you!
Cheri
-
- July 3, 2014 at 1:33 am
Shane, it really does seem like a monster.
Teochasse, my melanoma was approx 1 mm and showed signs of regression. It could have been there for a long time too. I had no symptoms until the last few weeks before I finally discovered it, and that was just a very slight itching. My treatment was a right-sided hemivulvectomy, and then 5 months later we found that I had melanoma in situ on the other side, so in total I have had 3 vulvar surgeries since May 2013, with bilateral sentinel lymph nodes biopsied, which were clear.
Thanks both of you!
Cheri
-
- July 4, 2014 at 8:03 pm
I had 2 months of very bad back pain they thought was muscle issues. I had off and on back pain for 20 years but nothing like that. Then 5 months of almost no pain except what there was was constant but otherwise thought I was normal and passed the annual physical ok. Then wham. I woke up one morning with a large bulge on my side. That was diagnosed as a seperated right external oblique muscle. I had a CT done anyway which barely showed something bad with my spine. I say barely because it was barely at the top of the scan cause they were scanning lower. MRI then biopsy of t10 vertebrae and this nightmare. Now when the tumors get bigger I usually don't have much pain unless they are getting crazy fast bigger. I think it might be because the nerves in those areas have been destroyed but I and the docs are not sure.
Artie
-
- July 4, 2014 at 8:03 pm
I had 2 months of very bad back pain they thought was muscle issues. I had off and on back pain for 20 years but nothing like that. Then 5 months of almost no pain except what there was was constant but otherwise thought I was normal and passed the annual physical ok. Then wham. I woke up one morning with a large bulge on my side. That was diagnosed as a seperated right external oblique muscle. I had a CT done anyway which barely showed something bad with my spine. I say barely because it was barely at the top of the scan cause they were scanning lower. MRI then biopsy of t10 vertebrae and this nightmare. Now when the tumors get bigger I usually don't have much pain unless they are getting crazy fast bigger. I think it might be because the nerves in those areas have been destroyed but I and the docs are not sure.
Artie
-
- July 5, 2014 at 2:22 am
Artie, my first thought was how painful of a nightmare that would be. I'm glad you don't have much pain, or at least not all the time, even if it is damaged nerves, although it still must be painful.
Where did your melanoma first start? Do you remember what stage it was? Was it many years before the melanoma in your back or did it actually start there?
Cheri
-
- July 5, 2014 at 2:22 am
Artie, my first thought was how painful of a nightmare that would be. I'm glad you don't have much pain, or at least not all the time, even if it is damaged nerves, although it still must be painful.
Where did your melanoma first start? Do you remember what stage it was? Was it many years before the melanoma in your back or did it actually start there?
Cheri
-
- July 5, 2014 at 4:29 pm
As far as I know I was stage 4 with it in my T10 vertebrae starting there. That diagnosis was June 21 2013 and the first I knew about it. Then a few days later they did a pet scan which showed it in some other bones. It has grown and spread ever since. Best I can figure I must have got the melanoma on my skin probably my back in the summer of 2012. Then the pain and stuff that nov and dec. Then finally the seperated muscle in may 2013 and diagnosis in june. But they never found anything on my skin.
-
- July 5, 2014 at 4:29 pm
As far as I know I was stage 4 with it in my T10 vertebrae starting there. That diagnosis was June 21 2013 and the first I knew about it. Then a few days later they did a pet scan which showed it in some other bones. It has grown and spread ever since. Best I can figure I must have got the melanoma on my skin probably my back in the summer of 2012. Then the pain and stuff that nov and dec. Then finally the seperated muscle in may 2013 and diagnosis in june. But they never found anything on my skin.
-
- July 5, 2014 at 4:29 pm
As far as I know I was stage 4 with it in my T10 vertebrae starting there. That diagnosis was June 21 2013 and the first I knew about it. Then a few days later they did a pet scan which showed it in some other bones. It has grown and spread ever since. Best I can figure I must have got the melanoma on my skin probably my back in the summer of 2012. Then the pain and stuff that nov and dec. Then finally the seperated muscle in may 2013 and diagnosis in june. But they never found anything on my skin.
-
- July 5, 2014 at 2:22 am
Artie, my first thought was how painful of a nightmare that would be. I'm glad you don't have much pain, or at least not all the time, even if it is damaged nerves, although it still must be painful.
Where did your melanoma first start? Do you remember what stage it was? Was it many years before the melanoma in your back or did it actually start there?
Cheri
-
- July 4, 2014 at 8:03 pm
I had 2 months of very bad back pain they thought was muscle issues. I had off and on back pain for 20 years but nothing like that. Then 5 months of almost no pain except what there was was constant but otherwise thought I was normal and passed the annual physical ok. Then wham. I woke up one morning with a large bulge on my side. That was diagnosed as a seperated right external oblique muscle. I had a CT done anyway which barely showed something bad with my spine. I say barely because it was barely at the top of the scan cause they were scanning lower. MRI then biopsy of t10 vertebrae and this nightmare. Now when the tumors get bigger I usually don't have much pain unless they are getting crazy fast bigger. I think it might be because the nerves in those areas have been destroyed but I and the docs are not sure.
Artie
-
- You must be logged in to reply to this topic.