› Forums › General Melanoma Community › Fiance just diagnosed
- This topic has 18 replies, 5 voices, and was last updated 7 years, 3 months ago by
mjanssentx.
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- January 25, 2017 at 7:37 pm
My fiance had a dark mole on his arm that grew in size and width and changed colors one day he showered and scrubed it off and it bled pretty nast but was gone with in about 3 months he developed a large hard tumor like growth about 2 months after that he developed a large lump under his arm pit which i imagined was his lympyh node and i made him go to the doctor. She thought it was nothing to be concerned about and sent him to surgeon for removal. He had the lump by elbow area removed abd lump under arm removed. The beggining of this week he went in to have staples removed and sugeon told him that biopsy came back positive for malignant melanoma. We are scheduled to see an oncologist on tuesday for more info and treatment options we have no clue what stage we are in or how bad it is. Im am very scarred for him and our kids our financials and everything and i am unable to work because our youngest daughter has an immune deficiency that causes her to be sick constantly. Any advice or help? The area under his armpit seems to still have some kind of growth which makes ne think surgeon didnt remove it all
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- January 26, 2017 at 2:27 am
Which biopsy came back positive for melanoma? The one on the arm or the one under the armpit or both?
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- January 26, 2017 at 6:34 am
I believe both did. Unfortunately i had to drop and pick him up for surgery and dodnt get to talk to doc after. And he went alone to get staples removed. I will be going with him to oncologist though and all appointments here on out. Im very good at understanding all things medical and always do lots of research so i am educated on what is going on and know what to ask. As far as if both were positive for melanoma im not sure. My fiance did tell me they showed him the first one they removed that was by his elbow that was tumored underhis skin where the mole used to be before he scrubbed it off and ge said it was completely black and the size of a golf ball maybe a little bigger. And tpniggt i was rubbing his nech and noticed that his lymph node located under is neck has swelled now. Im getting worried and trying not to freak h out with all info i find. -
- January 26, 2017 at 6:34 am
I believe both did. Unfortunately i had to drop and pick him up for surgery and dodnt get to talk to doc after. And he went alone to get staples removed. I will be going with him to oncologist though and all appointments here on out. Im very good at understanding all things medical and always do lots of research so i am educated on what is going on and know what to ask. As far as if both were positive for melanoma im not sure. My fiance did tell me they showed him the first one they removed that was by his elbow that was tumored underhis skin where the mole used to be before he scrubbed it off and ge said it was completely black and the size of a golf ball maybe a little bigger. And tpniggt i was rubbing his nech and noticed that his lymph node located under is neck has swelled now. Im getting worried and trying not to freak h out with all info i find. -
- January 26, 2017 at 6:34 am
I believe both did. Unfortunately i had to drop and pick him up for surgery and dodnt get to talk to doc after. And he went alone to get staples removed. I will be going with him to oncologist though and all appointments here on out. Im very good at understanding all things medical and always do lots of research so i am educated on what is going on and know what to ask. As far as if both were positive for melanoma im not sure. My fiance did tell me they showed him the first one they removed that was by his elbow that was tumored underhis skin where the mole used to be before he scrubbed it off and ge said it was completely black and the size of a golf ball maybe a little bigger. And tpniggt i was rubbing his nech and noticed that his lymph node located under is neck has swelled now. Im getting worried and trying not to freak h out with all info i find. -
- January 26, 2017 at 6:42 am
Surgeon said swelling of lymphnode under arm was do to the melanoma from his forarm spreading. And they did run blood work before surgery and said it came back clean. The oncologist were going to is at the center for oncology and hematology in dover ohio. I think after that everything else is handled at Cleveland clinic but not positive yet. -
- January 26, 2017 at 6:42 am
Surgeon said swelling of lymphnode under arm was do to the melanoma from his forarm spreading. And they did run blood work before surgery and said it came back clean. The oncologist were going to is at the center for oncology and hematology in dover ohio. I think after that everything else is handled at Cleveland clinic but not positive yet. -
- January 26, 2017 at 6:42 am
Surgeon said swelling of lymphnode under arm was do to the melanoma from his forarm spreading. And they did run blood work before surgery and said it came back clean. The oncologist were going to is at the center for oncology and hematology in dover ohio. I think after that everything else is handled at Cleveland clinic but not positive yet.
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- January 26, 2017 at 5:34 am
Yes, this is very scaring time, other times are scaring too…we are all going through this, unfrotunatelly. But I read many stories of succesful treatments too. Stay positive!
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- January 26, 2017 at 5:34 am
Yes, this is very scaring time, other times are scaring too…we are all going through this, unfrotunatelly. But I read many stories of succesful treatments too. Stay positive!
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- January 26, 2017 at 5:34 am
Yes, this is very scaring time, other times are scaring too…we are all going through this, unfrotunatelly. But I read many stories of succesful treatments too. Stay positive!
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- January 26, 2017 at 5:54 am
Random order…
1) Get hard copies of his reports and CDs. You want to have your own copies of everything.
2) Make sure you get a second opinion and that both opinions are from melanoma specialists. You do not want to see an oncologist that treats a few melanoma patients. – Education facilities are good places to start, but ask for recommendations here. Just tell everyone where you are located.
3) Find out if he is BRAF +.
4) Make the doctors look at the scans and show you where things are, IF there is anything.
5) Make sure your husband gets a brain MRI. Regular scans are needed even if he is not positive now for brain mets. 40% of melanoma patients get brain mets. – If he has a brain me now or later you do not want whole brain radiation. You want gamma knife radiation with an immunotherapy, if possible. Combos are best.
6) Take a recorder if you think you will miss something when you talk to the doctor. It will help you when you are trying to recall what happened. Have a list of questions about staging, options, any information from the biopsy, PET scan, CT scans or brain MRI. Ask how many melanoma patients the oncologist has now that he or she sees weekly. Asking about his or her experience with immunotherapies. Information on clinical trials.
7) Find someone who can be his advocate. You need someone who is curious, asks questions and can understand or "get" the studies out there on melanoma and undrestand what is going on with your husbands case.
8) Ask people here for help or information.
9) Things with melanoma have changed radically over the last few years. Don't get freaked out with the information you find online. There are a lot of people who are living with Stage IV. Including my 80 year old Mom who is Stage IV with 28 brain mets. (She's fine.) Some are NED. Some are stable. And some need a few different medications before something works.
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- January 26, 2017 at 5:54 am
Random order…
1) Get hard copies of his reports and CDs. You want to have your own copies of everything.
2) Make sure you get a second opinion and that both opinions are from melanoma specialists. You do not want to see an oncologist that treats a few melanoma patients. – Education facilities are good places to start, but ask for recommendations here. Just tell everyone where you are located.
3) Find out if he is BRAF +.
4) Make the doctors look at the scans and show you where things are, IF there is anything.
5) Make sure your husband gets a brain MRI. Regular scans are needed even if he is not positive now for brain mets. 40% of melanoma patients get brain mets. – If he has a brain me now or later you do not want whole brain radiation. You want gamma knife radiation with an immunotherapy, if possible. Combos are best.
6) Take a recorder if you think you will miss something when you talk to the doctor. It will help you when you are trying to recall what happened. Have a list of questions about staging, options, any information from the biopsy, PET scan, CT scans or brain MRI. Ask how many melanoma patients the oncologist has now that he or she sees weekly. Asking about his or her experience with immunotherapies. Information on clinical trials.
7) Find someone who can be his advocate. You need someone who is curious, asks questions and can understand or "get" the studies out there on melanoma and undrestand what is going on with your husbands case.
8) Ask people here for help or information.
9) Things with melanoma have changed radically over the last few years. Don't get freaked out with the information you find online. There are a lot of people who are living with Stage IV. Including my 80 year old Mom who is Stage IV with 28 brain mets. (She's fine.) Some are NED. Some are stable. And some need a few different medications before something works.
-
- January 26, 2017 at 5:54 am
Random order…
1) Get hard copies of his reports and CDs. You want to have your own copies of everything.
2) Make sure you get a second opinion and that both opinions are from melanoma specialists. You do not want to see an oncologist that treats a few melanoma patients. – Education facilities are good places to start, but ask for recommendations here. Just tell everyone where you are located.
3) Find out if he is BRAF +.
4) Make the doctors look at the scans and show you where things are, IF there is anything.
5) Make sure your husband gets a brain MRI. Regular scans are needed even if he is not positive now for brain mets. 40% of melanoma patients get brain mets. – If he has a brain me now or later you do not want whole brain radiation. You want gamma knife radiation with an immunotherapy, if possible. Combos are best.
6) Take a recorder if you think you will miss something when you talk to the doctor. It will help you when you are trying to recall what happened. Have a list of questions about staging, options, any information from the biopsy, PET scan, CT scans or brain MRI. Ask how many melanoma patients the oncologist has now that he or she sees weekly. Asking about his or her experience with immunotherapies. Information on clinical trials.
7) Find someone who can be his advocate. You need someone who is curious, asks questions and can understand or "get" the studies out there on melanoma and undrestand what is going on with your husbands case.
8) Ask people here for help or information.
9) Things with melanoma have changed radically over the last few years. Don't get freaked out with the information you find online. There are a lot of people who are living with Stage IV. Including my 80 year old Mom who is Stage IV with 28 brain mets. (She's fine.) Some are NED. Some are stable. And some need a few different medications before something works.
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- January 27, 2017 at 10:25 pm
Bmine – I agree with Patina's list and reemphasize seeing a real melanoma specialist. He is most likely going to be stage 4 based upon what you said. I am sure you have seen the stats for Stage 4 patients by now….and they still apply IF you don't do anything. The very good news is that those stats are NOT relevant in today's world with active care.
The other good news is that it sounds like you are "on the case". One other thing that you can't under play from Patina's list in the need to be your own advocate. Our medical system can produce miracles (especially in the rapid advances in melanoma treatments today) BUT our system of medicine requires the patient/family to be their own advocate. Getting educated, following through on appointments, asking questions, getting copies of everything, playing the insurance game have now all become a new full contact sport that you need to be aggressive with.
The folks on this forum will help you…we all bring different experiences and can contribute in different ways….just ask. Sorry that you are here but welcome
Best wishes
Michel
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- January 27, 2017 at 10:25 pm
Bmine – I agree with Patina's list and reemphasize seeing a real melanoma specialist. He is most likely going to be stage 4 based upon what you said. I am sure you have seen the stats for Stage 4 patients by now….and they still apply IF you don't do anything. The very good news is that those stats are NOT relevant in today's world with active care.
The other good news is that it sounds like you are "on the case". One other thing that you can't under play from Patina's list in the need to be your own advocate. Our medical system can produce miracles (especially in the rapid advances in melanoma treatments today) BUT our system of medicine requires the patient/family to be their own advocate. Getting educated, following through on appointments, asking questions, getting copies of everything, playing the insurance game have now all become a new full contact sport that you need to be aggressive with.
The folks on this forum will help you…we all bring different experiences and can contribute in different ways….just ask. Sorry that you are here but welcome
Best wishes
Michel
-
- January 27, 2017 at 10:25 pm
Bmine – I agree with Patina's list and reemphasize seeing a real melanoma specialist. He is most likely going to be stage 4 based upon what you said. I am sure you have seen the stats for Stage 4 patients by now….and they still apply IF you don't do anything. The very good news is that those stats are NOT relevant in today's world with active care.
The other good news is that it sounds like you are "on the case". One other thing that you can't under play from Patina's list in the need to be your own advocate. Our medical system can produce miracles (especially in the rapid advances in melanoma treatments today) BUT our system of medicine requires the patient/family to be their own advocate. Getting educated, following through on appointments, asking questions, getting copies of everything, playing the insurance game have now all become a new full contact sport that you need to be aggressive with.
The folks on this forum will help you…we all bring different experiences and can contribute in different ways….just ask. Sorry that you are here but welcome
Best wishes
Michel
Tagged: cutaneous melanoma
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