› Forums › Cutaneous Melanoma Community › Who Specifies Your Stage?
- This topic has 51 replies, 6 voices, and was last updated 9 years, 6 months ago by Girl52.
- Post
-
- October 27, 2014 at 10:44 pm
My brother-in-law had followup visit today with general surgeon who did his WLE and SNB recently; like PET scan, nodes clean. Path report had said, "Diagnosis: metastatic melanoma" of the lesion on his arm. BIL has no plans to see an oncologist, much less a melanoma specialist, though folks here and other research indicate that he's a Stage III.
If staging information isn't cited specifically on your pathology report — and neither your dermatologist nor surgeon use this precise language — how do you know you're a Stage III? How do patients normally get this information. Can it happen that no one ever specifies this…that any/all doctors a patient sees assume that someone else has given him or her this info, or that he or she will arrive at this conclusion on their own?
Surgeon didn't refer BIL to an oncologist, but did say he needed to be very alert for ANY skin changes, and any pain, fatigue, or other body signs that might indicate cancer spread. If they tell you this much, can't they come out and say, "Stage III?"
- Replies
-
-
- October 27, 2014 at 11:06 pm
Hi Girl52,
I asked my surgeon directly for my stage, he did not offer it. None of my 5 docs have offered it. The second opinion doc in NYC pointedly chose not to say stage IIIA, preferring to say T1bN1a. When I said, "So 3a?" he said "T1bN1a". I don't understand the reluctance.
Elaine
-
- October 27, 2014 at 11:06 pm
Hi Girl52,
I asked my surgeon directly for my stage, he did not offer it. None of my 5 docs have offered it. The second opinion doc in NYC pointedly chose not to say stage IIIA, preferring to say T1bN1a. When I said, "So 3a?" he said "T1bN1a". I don't understand the reluctance.
Elaine
-
- October 27, 2014 at 11:06 pm
Hi Girl52,
I asked my surgeon directly for my stage, he did not offer it. None of my 5 docs have offered it. The second opinion doc in NYC pointedly chose not to say stage IIIA, preferring to say T1bN1a. When I said, "So 3a?" he said "T1bN1a". I don't understand the reluctance.
Elaine
-
- October 28, 2014 at 12:22 am
Do you really think the doc saying he was stage 3 would have changed your BIL's mind? The surgeon might have already figured out his type. If someone doesn't want to know, why tell them?
Especially with all the new treatments, docs might not bring up staging. Survival rates by stage are out of date now. I think most docs are optimistic and by not discussing staging, they have more flexibility. It truthfully only matters for insurance and clinical trials… and if you have a "need to know" personality. Since BIL isn't planning on doing treatment or followups, he doesn't really need to know.
-
- October 28, 2014 at 1:06 am
Interesting range of answers to this question. I'd think insurance and clinical trials — cost coverage and treatment access issues — are huge for many patients and would prompt the question at some point if the info weren't offered. Flexibility on doctors' parts is good, though, especially if attaching a stage label on paper can bar someone from participating in a potentially beneficial trial, etc.
Almost everyone who posts to this board cites their stage. I don't know if folks here are a representative sample of the "diagnosed with melanoma" population (maybe most of us are "need to know" types). And Web material on melanoma is often organized by stage. In general, it seems to be an organizing principle for patient understanding and decision-making. "How serious is this?"
I do think hearing "Stage III" might help BIL. It's an oft-used cancer-related term that elicits focus and attention. A clear, consistent vocabulary — from the path report to the surgery followup — might help. The world would be a better place if we had greater numbers of professional "dot connectors" in the world of healthcare, wouldn't it? I appreciate all responses.
-
- October 28, 2014 at 1:06 am
Interesting range of answers to this question. I'd think insurance and clinical trials — cost coverage and treatment access issues — are huge for many patients and would prompt the question at some point if the info weren't offered. Flexibility on doctors' parts is good, though, especially if attaching a stage label on paper can bar someone from participating in a potentially beneficial trial, etc.
Almost everyone who posts to this board cites their stage. I don't know if folks here are a representative sample of the "diagnosed with melanoma" population (maybe most of us are "need to know" types). And Web material on melanoma is often organized by stage. In general, it seems to be an organizing principle for patient understanding and decision-making. "How serious is this?"
I do think hearing "Stage III" might help BIL. It's an oft-used cancer-related term that elicits focus and attention. A clear, consistent vocabulary — from the path report to the surgery followup — might help. The world would be a better place if we had greater numbers of professional "dot connectors" in the world of healthcare, wouldn't it? I appreciate all responses.
-
- October 28, 2014 at 1:29 am
Unless you want to know, I'm not sure stage III means much to anyone who isn't intimately familiar with cancer. Some people have no clue that stage IV is the last stage. It's just a phrase without real impact to the uninformed on cancer. I know quite a few early stagers that really have no clue – I found out they had melanoma by talking to them, NOT by finding them online. I think if you really don't research online, then staging doesn't have the same impact. You aren't relating your circumstances with someone else, or comparing notes.
If you really think stage III would have impact, maybe that is where you step in and ask "do you know your stage"?
-
- October 28, 2014 at 1:29 am
Unless you want to know, I'm not sure stage III means much to anyone who isn't intimately familiar with cancer. Some people have no clue that stage IV is the last stage. It's just a phrase without real impact to the uninformed on cancer. I know quite a few early stagers that really have no clue – I found out they had melanoma by talking to them, NOT by finding them online. I think if you really don't research online, then staging doesn't have the same impact. You aren't relating your circumstances with someone else, or comparing notes.
If you really think stage III would have impact, maybe that is where you step in and ask "do you know your stage"?
-
- October 28, 2014 at 1:39 am
Jan: If I step in at all, this would be a good question to pose, you're right.
My original question has most to do with the definition of Stage III, and not the term itself: a serious, often aggressive, potentially highly recurrent situation that could benefit from the counsel of an oncologist. Why didn't the surgeon say that clearly? Rhetorical question. The derm said it a month ago!
-
- October 28, 2014 at 1:39 am
Jan: If I step in at all, this would be a good question to pose, you're right.
My original question has most to do with the definition of Stage III, and not the term itself: a serious, often aggressive, potentially highly recurrent situation that could benefit from the counsel of an oncologist. Why didn't the surgeon say that clearly? Rhetorical question. The derm said it a month ago!
-
- October 28, 2014 at 1:39 am
Jan: If I step in at all, this would be a good question to pose, you're right.
My original question has most to do with the definition of Stage III, and not the term itself: a serious, often aggressive, potentially highly recurrent situation that could benefit from the counsel of an oncologist. Why didn't the surgeon say that clearly? Rhetorical question. The derm said it a month ago!
-
- October 28, 2014 at 1:29 am
Unless you want to know, I'm not sure stage III means much to anyone who isn't intimately familiar with cancer. Some people have no clue that stage IV is the last stage. It's just a phrase without real impact to the uninformed on cancer. I know quite a few early stagers that really have no clue – I found out they had melanoma by talking to them, NOT by finding them online. I think if you really don't research online, then staging doesn't have the same impact. You aren't relating your circumstances with someone else, or comparing notes.
If you really think stage III would have impact, maybe that is where you step in and ask "do you know your stage"?
-
- October 28, 2014 at 1:06 am
Interesting range of answers to this question. I'd think insurance and clinical trials — cost coverage and treatment access issues — are huge for many patients and would prompt the question at some point if the info weren't offered. Flexibility on doctors' parts is good, though, especially if attaching a stage label on paper can bar someone from participating in a potentially beneficial trial, etc.
Almost everyone who posts to this board cites their stage. I don't know if folks here are a representative sample of the "diagnosed with melanoma" population (maybe most of us are "need to know" types). And Web material on melanoma is often organized by stage. In general, it seems to be an organizing principle for patient understanding and decision-making. "How serious is this?"
I do think hearing "Stage III" might help BIL. It's an oft-used cancer-related term that elicits focus and attention. A clear, consistent vocabulary — from the path report to the surgery followup — might help. The world would be a better place if we had greater numbers of professional "dot connectors" in the world of healthcare, wouldn't it? I appreciate all responses.
-
- October 28, 2014 at 12:22 am
Do you really think the doc saying he was stage 3 would have changed your BIL's mind? The surgeon might have already figured out his type. If someone doesn't want to know, why tell them?
Especially with all the new treatments, docs might not bring up staging. Survival rates by stage are out of date now. I think most docs are optimistic and by not discussing staging, they have more flexibility. It truthfully only matters for insurance and clinical trials… and if you have a "need to know" personality. Since BIL isn't planning on doing treatment or followups, he doesn't really need to know.
-
- October 28, 2014 at 12:22 am
Do you really think the doc saying he was stage 3 would have changed your BIL's mind? The surgeon might have already figured out his type. If someone doesn't want to know, why tell them?
Especially with all the new treatments, docs might not bring up staging. Survival rates by stage are out of date now. I think most docs are optimistic and by not discussing staging, they have more flexibility. It truthfully only matters for insurance and clinical trials… and if you have a "need to know" personality. Since BIL isn't planning on doing treatment or followups, he doesn't really need to know.
-
- October 28, 2014 at 12:58 am
Janner makes a good point. Right after (stubbornly) repeating T1bN1a, the doc reminded me that statistics by stage are no longer fully accurate because of new treatments. I had forgotten about that until I saw Janner's post.
Thanks, Janner.
-
- October 28, 2014 at 1:09 am
5Dives: Good point. I understand the fully accurate part. Guess I'm just reflecting the reality that, for less informed or less curious patients, something like "T1bN1a" is pretty obscure, where "stage III" has teeth. Not everyone needs motivating as much as my BIL, LOL.
-
- October 28, 2014 at 1:09 am
5Dives: Good point. I understand the fully accurate part. Guess I'm just reflecting the reality that, for less informed or less curious patients, something like "T1bN1a" is pretty obscure, where "stage III" has teeth. Not everyone needs motivating as much as my BIL, LOL.
-
- October 28, 2014 at 1:09 am
5Dives: Good point. I understand the fully accurate part. Guess I'm just reflecting the reality that, for less informed or less curious patients, something like "T1bN1a" is pretty obscure, where "stage III" has teeth. Not everyone needs motivating as much as my BIL, LOL.
-
- October 28, 2014 at 4:11 am
When doing some research in preparing a reply to this thread I found a bit of interesting/confusing bit of information on the American Cancer Society website—
A cancer’s stage does not change
http://www.cancer.org/treatment/understandingyourdiagnosis/staging
at the bottom of the page.
any one have comments??
As to my reply I would think medical professionals would think TNM staging to be most accurate.
Girl52 have you looked up the staging I-IV that applies from MRF website or others?
http://www.melanoma.org/understand-melanoma/diagnosing-melanoma/stages-of-diagnosis
Sorry if I missed that you had.
Janner- Might I suggest that some have suggested that cancers final stage is stage V and we often comment to others lightheartedly, that Adriana is not Stage V yet
Best wishes
Rob, Adriana's Boyfriend
-
- October 28, 2014 at 4:11 am
When doing some research in preparing a reply to this thread I found a bit of interesting/confusing bit of information on the American Cancer Society website—
A cancer’s stage does not change
http://www.cancer.org/treatment/understandingyourdiagnosis/staging
at the bottom of the page.
any one have comments??
As to my reply I would think medical professionals would think TNM staging to be most accurate.
Girl52 have you looked up the staging I-IV that applies from MRF website or others?
http://www.melanoma.org/understand-melanoma/diagnosing-melanoma/stages-of-diagnosis
Sorry if I missed that you had.
Janner- Might I suggest that some have suggested that cancers final stage is stage V and we often comment to others lightheartedly, that Adriana is not Stage V yet
Best wishes
Rob, Adriana's Boyfriend
-
- October 28, 2014 at 4:27 am
I've used the stage V reference before, my Dad is stage V this year. Maybe that actually sounds better?
As for the staging not changing, that might be how some statistics are gathered, but that is not how most people refer to themselves. They may have originally been stage 0/1/2, but they are now stage III/IV. Most refer to their current spread i.e. lymph/local mets or distant/organ mets. Interesting concept, but maybe used more for statistics (which makes sense) than actual patient use.
-
- October 28, 2014 at 4:27 am
I've used the stage V reference before, my Dad is stage V this year. Maybe that actually sounds better?
As for the staging not changing, that might be how some statistics are gathered, but that is not how most people refer to themselves. They may have originally been stage 0/1/2, but they are now stage III/IV. Most refer to their current spread i.e. lymph/local mets or distant/organ mets. Interesting concept, but maybe used more for statistics (which makes sense) than actual patient use.
-
- October 28, 2014 at 4:27 am
I've used the stage V reference before, my Dad is stage V this year. Maybe that actually sounds better?
As for the staging not changing, that might be how some statistics are gathered, but that is not how most people refer to themselves. They may have originally been stage 0/1/2, but they are now stage III/IV. Most refer to their current spread i.e. lymph/local mets or distant/organ mets. Interesting concept, but maybe used more for statistics (which makes sense) than actual patient use.
-
- October 28, 2014 at 4:11 am
When doing some research in preparing a reply to this thread I found a bit of interesting/confusing bit of information on the American Cancer Society website—
A cancer’s stage does not change
http://www.cancer.org/treatment/understandingyourdiagnosis/staging
at the bottom of the page.
any one have comments??
As to my reply I would think medical professionals would think TNM staging to be most accurate.
Girl52 have you looked up the staging I-IV that applies from MRF website or others?
http://www.melanoma.org/understand-melanoma/diagnosing-melanoma/stages-of-diagnosis
Sorry if I missed that you had.
Janner- Might I suggest that some have suggested that cancers final stage is stage V and we often comment to others lightheartedly, that Adriana is not Stage V yet
Best wishes
Rob, Adriana's Boyfriend
-
- October 28, 2014 at 9:22 am
When my dad was first seen at UCSF at the beginning of this year, we were given a little booklet that had all the different stages, their characteristics and the standards of care. The doctor never said it aloud to us, but he had circled 3C in the booklet, which he gave to me. Once the next PET/CT showed the melanoma had spread to the lungs and hip, there was no talk about staging, just treatment options. Dad never cared to know his stage; he just knows he has big ole tumors on his leg and wants to get better.
G52, please don't take offense because I mean this kindly, but having read several of your posts, do you think your brother-in-law might be feeling a bit bullied and harassed? If sounds like you're a fixer by nature, but perhaps he needs to hide in his cave and figure this out for himself. My mom refused my whole life to go to the doctor, and when I started to see obvious signs of heart disease, I begged her, sobbing, to see the doctor, and my father did as well. She wouldn't, though, and she passed away in her sleep, the way she had always wanted to, several weeks later. Likewise, my uncle (Mom's brother) was told he had advanced prostate cancer and wouldn't last six months without surgery and treatment. He told the doctor, "F- you" (literally), walked out, and lived an active, healthy life for nine more years. Could my mom and uncle have lived longer with medical intervention? Probably. But they chose the paths they wanted to take, and I'm certain neither one regretted it.
Sure, the rest of us want our parents, spouses and loved ones to be with us as long as possible, but our lives are ultimately our own and health decisions are very personal and only ours to make. Is he handling it wrong? Maybe. But he's handling it the way he wants to, which is entirely his prerogative. I'd just suggest that you tread very gently because I'm sure he is battling his own demons privately.
Life is delicate and precious, and death is always there waiting to snatch it from us, whether after a long battle with illness or in the blink of an eye, like it did my friend's husband a few days ago when some psycho on a cross-county shooting rampage killed him and another sheriff's deputy on a day they thought would be like any other. I guess what I'm trying to say is that if he's living his life right now the way he wants to live it, then let him be. He can put off the battle until he's ready as long as he's happy right now because 'right now' is all any of us are guaranteed.
Elaine
-
- October 28, 2014 at 9:22 am
When my dad was first seen at UCSF at the beginning of this year, we were given a little booklet that had all the different stages, their characteristics and the standards of care. The doctor never said it aloud to us, but he had circled 3C in the booklet, which he gave to me. Once the next PET/CT showed the melanoma had spread to the lungs and hip, there was no talk about staging, just treatment options. Dad never cared to know his stage; he just knows he has big ole tumors on his leg and wants to get better.
G52, please don't take offense because I mean this kindly, but having read several of your posts, do you think your brother-in-law might be feeling a bit bullied and harassed? If sounds like you're a fixer by nature, but perhaps he needs to hide in his cave and figure this out for himself. My mom refused my whole life to go to the doctor, and when I started to see obvious signs of heart disease, I begged her, sobbing, to see the doctor, and my father did as well. She wouldn't, though, and she passed away in her sleep, the way she had always wanted to, several weeks later. Likewise, my uncle (Mom's brother) was told he had advanced prostate cancer and wouldn't last six months without surgery and treatment. He told the doctor, "F- you" (literally), walked out, and lived an active, healthy life for nine more years. Could my mom and uncle have lived longer with medical intervention? Probably. But they chose the paths they wanted to take, and I'm certain neither one regretted it.
Sure, the rest of us want our parents, spouses and loved ones to be with us as long as possible, but our lives are ultimately our own and health decisions are very personal and only ours to make. Is he handling it wrong? Maybe. But he's handling it the way he wants to, which is entirely his prerogative. I'd just suggest that you tread very gently because I'm sure he is battling his own demons privately.
Life is delicate and precious, and death is always there waiting to snatch it from us, whether after a long battle with illness or in the blink of an eye, like it did my friend's husband a few days ago when some psycho on a cross-county shooting rampage killed him and another sheriff's deputy on a day they thought would be like any other. I guess what I'm trying to say is that if he's living his life right now the way he wants to live it, then let him be. He can put off the battle until he's ready as long as he's happy right now because 'right now' is all any of us are guaranteed.
Elaine
-
- October 28, 2014 at 2:09 pm
Elaine: Thanks for your thoughtful reply; I haven't been sharing my deep concerns with BIL….only here, precisely because I don't want him to feel bullied and harassed. I have said here repeatedly that I feel so very stressed about this because I watched my own husband die. Yes, I am a fixer by nature. But I am not imposing this on BIL. I am well aware that we are each on our own….at times this is for the good, and at times it is for the sad. I am working on it accepting that reality in this case as I gather info for my personal insight. Thanks again for your reply.
-
- October 28, 2014 at 2:09 pm
Elaine: Thanks for your thoughtful reply; I haven't been sharing my deep concerns with BIL….only here, precisely because I don't want him to feel bullied and harassed. I have said here repeatedly that I feel so very stressed about this because I watched my own husband die. Yes, I am a fixer by nature. But I am not imposing this on BIL. I am well aware that we are each on our own….at times this is for the good, and at times it is for the sad. I am working on it accepting that reality in this case as I gather info for my personal insight. Thanks again for your reply.
-
- October 28, 2014 at 2:09 pm
Elaine: Thanks for your thoughtful reply; I haven't been sharing my deep concerns with BIL….only here, precisely because I don't want him to feel bullied and harassed. I have said here repeatedly that I feel so very stressed about this because I watched my own husband die. Yes, I am a fixer by nature. But I am not imposing this on BIL. I am well aware that we are each on our own….at times this is for the good, and at times it is for the sad. I am working on it accepting that reality in this case as I gather info for my personal insight. Thanks again for your reply.
-
- October 28, 2014 at 5:41 pm
Elaine: I didn't mean to be curt earlier….was running to work. Thanks again for your thoughtful and kind reply. Am sorry to hear about your friend's husband.
I probably sound defensive, because that's how I feel. As may have been guessed from this entire thread, I am seeking information and feeling lots of painful things in the context of an overall relationship with a difficult person. My BIL's decision-making has been self-destructive, hurtful, and costly to family over decades. My sister often turns to me for help, then re-resolves to let it be. Periodically, I worry about her emotional and financial wellbeing as she copes with consequences of her husband's denial and avoidance. Of course, I realize it's not my responsibility, and that it's our loved one's prerogative to do as he chooses.
Was reading a site last night about handling a cancer diagnosis…material had helpful counsel for the patient about willingness to be open with loved ones, and asking for help and support. It also mentioned others' respecting the patient's wishes. This can be a delicate balance, when in family relationships our self-care choices can affect others so profoundly.
Now, I need to work on taking good care of myself so I can be of support in case it's needed. Thanks a lot.
-
- October 28, 2014 at 5:41 pm
Elaine: I didn't mean to be curt earlier….was running to work. Thanks again for your thoughtful and kind reply. Am sorry to hear about your friend's husband.
I probably sound defensive, because that's how I feel. As may have been guessed from this entire thread, I am seeking information and feeling lots of painful things in the context of an overall relationship with a difficult person. My BIL's decision-making has been self-destructive, hurtful, and costly to family over decades. My sister often turns to me for help, then re-resolves to let it be. Periodically, I worry about her emotional and financial wellbeing as she copes with consequences of her husband's denial and avoidance. Of course, I realize it's not my responsibility, and that it's our loved one's prerogative to do as he chooses.
Was reading a site last night about handling a cancer diagnosis…material had helpful counsel for the patient about willingness to be open with loved ones, and asking for help and support. It also mentioned others' respecting the patient's wishes. This can be a delicate balance, when in family relationships our self-care choices can affect others so profoundly.
Now, I need to work on taking good care of myself so I can be of support in case it's needed. Thanks a lot.
-
- October 28, 2014 at 5:41 pm
Elaine: I didn't mean to be curt earlier….was running to work. Thanks again for your thoughtful and kind reply. Am sorry to hear about your friend's husband.
I probably sound defensive, because that's how I feel. As may have been guessed from this entire thread, I am seeking information and feeling lots of painful things in the context of an overall relationship with a difficult person. My BIL's decision-making has been self-destructive, hurtful, and costly to family over decades. My sister often turns to me for help, then re-resolves to let it be. Periodically, I worry about her emotional and financial wellbeing as she copes with consequences of her husband's denial and avoidance. Of course, I realize it's not my responsibility, and that it's our loved one's prerogative to do as he chooses.
Was reading a site last night about handling a cancer diagnosis…material had helpful counsel for the patient about willingness to be open with loved ones, and asking for help and support. It also mentioned others' respecting the patient's wishes. This can be a delicate balance, when in family relationships our self-care choices can affect others so profoundly.
Now, I need to work on taking good care of myself so I can be of support in case it's needed. Thanks a lot.
-
- October 29, 2014 at 7:06 am
You didn't sound curt at all! I can understand that your concern would be primarily based on the effects all of this would have on your sister, and it's completely understandable that you feel protective of her. Perhaps a better and more productive focus would be on her: how she can deal with the situation as it exists today and how she might be able to handle anything that comes up in the future. To paraphrase the saying, we can't control what others do, but we can control how we react to what they do. It might help her to feel less powerless if she had her own plan in place, but it sounds like she's also very accustomed to acceding to her husband's wishes. Don't let yourself get bogged down in worry if they are not. You may just have to accept that you'll need to be there to pick up the pieces someday.
-
- October 29, 2014 at 5:42 pm
Elaine: You hit the nail on the head. When I've tried, gently, to suggest to her that some thinking/planning ahead in light of her husband's behavior (since they basically live on his income) would be good idea, she has said that she can't let herself think too much about future because it's upsetting…that she wants to trust that things will work out. I understand and admire this, but it's concerning on a practical level.
While she's dealing pretty well emotionally with letting go of control of his lack of self-care, it's these practical aspects that worry me most. I and other family members have been there in past, in other intense situations, and I dread a repeat. While my sister, who I adore, says she is ready for anything, I'm not sure she realizes what this might mean.
My info seeking on this forum is my own all-out effort to help avert another crisis than requires extensive family support. I am starting to see this isn't in my power. I guess all I can do is make my own decision about what I'm willing to do if a serious recurrence — and all its implications — happens.
Thanks again for suggestion about shift in focus…That's exactly what's called for. How easy it is to lose perspective in a firestorm of anxiety about the latest in a long string of poor decisions and resulting troubles, by a loved one. Again, hope something about this thread helps another member in a similar situation.
-
- October 30, 2014 at 8:03 am
Much luck to you. I know how hard it is to want to help someone who doesn't really want to take certain types of advice. I know it's also hard on her part to change years of habit. Hopefully, she working through it at her own pace, and hopefully, her husband will go many years with no recurrence.
-
- October 30, 2014 at 8:03 am
Much luck to you. I know how hard it is to want to help someone who doesn't really want to take certain types of advice. I know it's also hard on her part to change years of habit. Hopefully, she working through it at her own pace, and hopefully, her husband will go many years with no recurrence.
-
- October 30, 2014 at 8:03 am
Much luck to you. I know how hard it is to want to help someone who doesn't really want to take certain types of advice. I know it's also hard on her part to change years of habit. Hopefully, she working through it at her own pace, and hopefully, her husband will go many years with no recurrence.
-
- November 1, 2014 at 3:52 pm
I've been trying to catch up on what's been going on with your BIL and I'm sorry to hear that his surgeon didn't give him the reality check he needed.
From your posts it does sound like he is in denial about his health situation, the melanoma, the a-fib, etc. He doesn't seem like the type who will follow up with regular skin screenings, either.
As I mentioned in an earlier post, you can't help anyone who refuses to or doesn't want to help themselves. As painful as it is, you have to let go. You've done the right thing by learning as much about melanoma and unknown primaries as you can. Hopefully you'll never have to use what you've learned but at least you have it in your arsenal in case it's needed.
-
- November 3, 2014 at 11:28 pm
Linny: Thanks so much for checking in. I haven't been on the board in a few days because, as you point out, there's nothing else I can do for BIL now. Am hoping he'll be good about the regular skin checks, although his history wouldn't suggest this LOL. I'm trying to laugh, including at myself for assuming that any other reasonable human being would see the situation as I do.
Am grateful to you and others here for sharing knowledge and caring. What a great place to be able to return to if needed. I wish you the best in all aspects of your journey.
-
- November 3, 2014 at 11:28 pm
Linny: Thanks so much for checking in. I haven't been on the board in a few days because, as you point out, there's nothing else I can do for BIL now. Am hoping he'll be good about the regular skin checks, although his history wouldn't suggest this LOL. I'm trying to laugh, including at myself for assuming that any other reasonable human being would see the situation as I do.
Am grateful to you and others here for sharing knowledge and caring. What a great place to be able to return to if needed. I wish you the best in all aspects of your journey.
-
- November 3, 2014 at 11:28 pm
Linny: Thanks so much for checking in. I haven't been on the board in a few days because, as you point out, there's nothing else I can do for BIL now. Am hoping he'll be good about the regular skin checks, although his history wouldn't suggest this LOL. I'm trying to laugh, including at myself for assuming that any other reasonable human being would see the situation as I do.
Am grateful to you and others here for sharing knowledge and caring. What a great place to be able to return to if needed. I wish you the best in all aspects of your journey.
-
- November 1, 2014 at 3:52 pm
I've been trying to catch up on what's been going on with your BIL and I'm sorry to hear that his surgeon didn't give him the reality check he needed.
From your posts it does sound like he is in denial about his health situation, the melanoma, the a-fib, etc. He doesn't seem like the type who will follow up with regular skin screenings, either.
As I mentioned in an earlier post, you can't help anyone who refuses to or doesn't want to help themselves. As painful as it is, you have to let go. You've done the right thing by learning as much about melanoma and unknown primaries as you can. Hopefully you'll never have to use what you've learned but at least you have it in your arsenal in case it's needed.
-
- November 1, 2014 at 3:52 pm
I've been trying to catch up on what's been going on with your BIL and I'm sorry to hear that his surgeon didn't give him the reality check he needed.
From your posts it does sound like he is in denial about his health situation, the melanoma, the a-fib, etc. He doesn't seem like the type who will follow up with regular skin screenings, either.
As I mentioned in an earlier post, you can't help anyone who refuses to or doesn't want to help themselves. As painful as it is, you have to let go. You've done the right thing by learning as much about melanoma and unknown primaries as you can. Hopefully you'll never have to use what you've learned but at least you have it in your arsenal in case it's needed.
-
- October 29, 2014 at 5:42 pm
Elaine: You hit the nail on the head. When I've tried, gently, to suggest to her that some thinking/planning ahead in light of her husband's behavior (since they basically live on his income) would be good idea, she has said that she can't let herself think too much about future because it's upsetting…that she wants to trust that things will work out. I understand and admire this, but it's concerning on a practical level.
While she's dealing pretty well emotionally with letting go of control of his lack of self-care, it's these practical aspects that worry me most. I and other family members have been there in past, in other intense situations, and I dread a repeat. While my sister, who I adore, says she is ready for anything, I'm not sure she realizes what this might mean.
My info seeking on this forum is my own all-out effort to help avert another crisis than requires extensive family support. I am starting to see this isn't in my power. I guess all I can do is make my own decision about what I'm willing to do if a serious recurrence — and all its implications — happens.
Thanks again for suggestion about shift in focus…That's exactly what's called for. How easy it is to lose perspective in a firestorm of anxiety about the latest in a long string of poor decisions and resulting troubles, by a loved one. Again, hope something about this thread helps another member in a similar situation.
-
- October 29, 2014 at 5:42 pm
Elaine: You hit the nail on the head. When I've tried, gently, to suggest to her that some thinking/planning ahead in light of her husband's behavior (since they basically live on his income) would be good idea, she has said that she can't let herself think too much about future because it's upsetting…that she wants to trust that things will work out. I understand and admire this, but it's concerning on a practical level.
While she's dealing pretty well emotionally with letting go of control of his lack of self-care, it's these practical aspects that worry me most. I and other family members have been there in past, in other intense situations, and I dread a repeat. While my sister, who I adore, says she is ready for anything, I'm not sure she realizes what this might mean.
My info seeking on this forum is my own all-out effort to help avert another crisis than requires extensive family support. I am starting to see this isn't in my power. I guess all I can do is make my own decision about what I'm willing to do if a serious recurrence — and all its implications — happens.
Thanks again for suggestion about shift in focus…That's exactly what's called for. How easy it is to lose perspective in a firestorm of anxiety about the latest in a long string of poor decisions and resulting troubles, by a loved one. Again, hope something about this thread helps another member in a similar situation.
-
- October 29, 2014 at 7:06 am
You didn't sound curt at all! I can understand that your concern would be primarily based on the effects all of this would have on your sister, and it's completely understandable that you feel protective of her. Perhaps a better and more productive focus would be on her: how she can deal with the situation as it exists today and how she might be able to handle anything that comes up in the future. To paraphrase the saying, we can't control what others do, but we can control how we react to what they do. It might help her to feel less powerless if she had her own plan in place, but it sounds like she's also very accustomed to acceding to her husband's wishes. Don't let yourself get bogged down in worry if they are not. You may just have to accept that you'll need to be there to pick up the pieces someday.
-
- October 29, 2014 at 7:06 am
You didn't sound curt at all! I can understand that your concern would be primarily based on the effects all of this would have on your sister, and it's completely understandable that you feel protective of her. Perhaps a better and more productive focus would be on her: how she can deal with the situation as it exists today and how she might be able to handle anything that comes up in the future. To paraphrase the saying, we can't control what others do, but we can control how we react to what they do. It might help her to feel less powerless if she had her own plan in place, but it sounds like she's also very accustomed to acceding to her husband's wishes. Don't let yourself get bogged down in worry if they are not. You may just have to accept that you'll need to be there to pick up the pieces someday.
-
- October 28, 2014 at 9:22 am
When my dad was first seen at UCSF at the beginning of this year, we were given a little booklet that had all the different stages, their characteristics and the standards of care. The doctor never said it aloud to us, but he had circled 3C in the booklet, which he gave to me. Once the next PET/CT showed the melanoma had spread to the lungs and hip, there was no talk about staging, just treatment options. Dad never cared to know his stage; he just knows he has big ole tumors on his leg and wants to get better.
G52, please don't take offense because I mean this kindly, but having read several of your posts, do you think your brother-in-law might be feeling a bit bullied and harassed? If sounds like you're a fixer by nature, but perhaps he needs to hide in his cave and figure this out for himself. My mom refused my whole life to go to the doctor, and when I started to see obvious signs of heart disease, I begged her, sobbing, to see the doctor, and my father did as well. She wouldn't, though, and she passed away in her sleep, the way she had always wanted to, several weeks later. Likewise, my uncle (Mom's brother) was told he had advanced prostate cancer and wouldn't last six months without surgery and treatment. He told the doctor, "F- you" (literally), walked out, and lived an active, healthy life for nine more years. Could my mom and uncle have lived longer with medical intervention? Probably. But they chose the paths they wanted to take, and I'm certain neither one regretted it.
Sure, the rest of us want our parents, spouses and loved ones to be with us as long as possible, but our lives are ultimately our own and health decisions are very personal and only ours to make. Is he handling it wrong? Maybe. But he's handling it the way he wants to, which is entirely his prerogative. I'd just suggest that you tread very gently because I'm sure he is battling his own demons privately.
Life is delicate and precious, and death is always there waiting to snatch it from us, whether after a long battle with illness or in the blink of an eye, like it did my friend's husband a few days ago when some psycho on a cross-county shooting rampage killed him and another sheriff's deputy on a day they thought would be like any other. I guess what I'm trying to say is that if he's living his life right now the way he wants to live it, then let him be. He can put off the battle until he's ready as long as he's happy right now because 'right now' is all any of us are guaranteed.
Elaine
-
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.