› Forums › General Melanoma Community › Confirmation on appropriate Stage I follow up
- This topic has 9 replies, 3 voices, and was last updated 10 years, 7 months ago by
brooke.
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- October 4, 2013 at 5:46 pm
Hello again!
I am very relieved to be on the forum with my husband's revised diagnosis from Stage III b to Stage I a.
I am so thankful for all the help and support I received when I thought we were dealing with a more advanced stage of the disease. My heart goes out to all those suffering from this disease.
Since my husband's misdiagnosis, I feel we have been written off by the doctors at Kaiser Permanente.
I understand the need for an oncologist may no longer be necessary, but I know proper follow up is.
If it wasn't for my medical background and this site, I may not have know what proper follow up entails.
I want to confirm with those of you who know more and care more than the docs at Kaiser that I am doing the right thing.
I have him scheduled every 3 months for a dermatoogy visit. I assume they'll do lymph node checks at that time.
On my husband's PET/CT scan, a few small nodules showed up in his lungs. At the time it concerned them a bit, but since the new diagnosis, they've said nothing about it.
I emailed his PCP who checked with oncology who said yes, follow up with a chest CT in 6 months. Hmm.. glad I asked! I don't think anyone would have told us.
Also on his PET scan, an area behind his tongue lit up. An ENT did a scope an said it was inflammation. No info on follow up.
After talking with his PCP, he said yes, they want follow up in 3 months. Thanks.
I certainly am aware that after reading everyone elses stories that Stage I is not nearly as frightening and hopefully even curable with the wide excision. But I still worry. I now have real trust issues with these docs and feel if I don't take action, no one will!
I would love to have him see a melanoma specialist, but it is $600 out of pocket. We will certainly do that if necessary.
I guess I'm looking for a little guidance!
Thank you all again!
Brooke
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- October 5, 2013 at 3:29 am
[I hope this is not a duplicate post. I'm having trouble tonight with the MPIP server not accepting my posts.]
Brooke,
I understand how disquieting it can be to not have trust in your doctors. I don't think your husband's doctors have done anything wrong, but they don't seem to be reassuring you or being as proactive as you would like. Unfortunately, I find that is very often the case no matter what kind of doctor I am seeing. I always do my research, write down my questions, and refuse to accept any answer that sounds like a brush-off. Most of the time my doctors do a double-take at my sophisticated questions but then they respond respectfully and well. Once or twice I have had a doctor refuse to listen to me, so I fired the doctor. This is all part of being "your own best health advocate" whether or not you have melanoma. So don't get too rattled. Just keep doing what you are doing.
As for consulting a melanoma specialist, there probably isn't much he/she could say about your husband's case right now. You have a good plan for the next 6 months. After the 6-month CT scan, if anything is changing or looks suspicious, that would be the time to consult a specialist.
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- October 5, 2013 at 3:29 am
[I hope this is not a duplicate post. I'm having trouble tonight with the MPIP server not accepting my posts.]
Brooke,
I understand how disquieting it can be to not have trust in your doctors. I don't think your husband's doctors have done anything wrong, but they don't seem to be reassuring you or being as proactive as you would like. Unfortunately, I find that is very often the case no matter what kind of doctor I am seeing. I always do my research, write down my questions, and refuse to accept any answer that sounds like a brush-off. Most of the time my doctors do a double-take at my sophisticated questions but then they respond respectfully and well. Once or twice I have had a doctor refuse to listen to me, so I fired the doctor. This is all part of being "your own best health advocate" whether or not you have melanoma. So don't get too rattled. Just keep doing what you are doing.
As for consulting a melanoma specialist, there probably isn't much he/she could say about your husband's case right now. You have a good plan for the next 6 months. After the 6-month CT scan, if anything is changing or looks suspicious, that would be the time to consult a specialist.
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- October 5, 2013 at 3:29 am
[I hope this is not a duplicate post. I'm having trouble tonight with the MPIP server not accepting my posts.]
Brooke,
I understand how disquieting it can be to not have trust in your doctors. I don't think your husband's doctors have done anything wrong, but they don't seem to be reassuring you or being as proactive as you would like. Unfortunately, I find that is very often the case no matter what kind of doctor I am seeing. I always do my research, write down my questions, and refuse to accept any answer that sounds like a brush-off. Most of the time my doctors do a double-take at my sophisticated questions but then they respond respectfully and well. Once or twice I have had a doctor refuse to listen to me, so I fired the doctor. This is all part of being "your own best health advocate" whether or not you have melanoma. So don't get too rattled. Just keep doing what you are doing.
As for consulting a melanoma specialist, there probably isn't much he/she could say about your husband's case right now. You have a good plan for the next 6 months. After the 6-month CT scan, if anything is changing or looks suspicious, that would be the time to consult a specialist.
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