Addressing Long-Term Side Effects After Treatment for Anal Cancer - Support Meeting
Comments
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great surgeon, lachLaCh said:what happened
No, as I said, I had bleeding, it was evaluated, diagnosed as a hemorroid and treated (ablated) and the bleeding stopped. It started again several months later and was ablated again. Each time the location of the 'roid was different, just as the site of the tumor was different from both hemorroid sites. The bleeding stopped and resumed six months after the second ablation and the third event of bleeding was the tumor. Each episode was independent of the others, was evaluated and treated independently of the others. To say that the hemorroids were misdiagnosed is not the case; they were diagnosed correctly and treated appropriately. Even a layman can see the difference between the two, so to say that a board certified gastroenterologist would mistake them upon visual exam stretches credibility. When an anal tumor is misdiagnosed as a hemorroid, it's generally because someone didn't look, didn't evaluate it, didn't do anything beyond take a history of rectal bleeding. In other words, it's often (not always, but often) not because something was done poorly, it's because nothing was done at all. That's not what happened to me. When I returned for what I assumed was another hemorroid ablation, the tumor was palpated under anesthesia (as I'm told) and then visualized with the scope, and it was immediately evident (to the gastroenterologist) that contrary to what we both assumed, this wasn't another hemorroid. A biopsy was performed and the diagnosis made. What I had was a gastroenterologist who was willing to treat a third incidence of rectal bleeding, despite the potential of being lulled into a false sense of complacency based on a previous history of two hemorroids, was astute enough to recognize that the third time was something all together different from the first two, who had pulled strings to make it possible for me to even go there a third time (remember, there were rules at that time that demanded someone to accompany home anyone receiving anesthesia, and I had no one; without those rules being lifted by her, I'd either be dead by now or well on my way. ) So I've been crazy lucky in many ways, but as far as being misdiagnosed... no. Not in this. As a matter of fact, ironically, I have been misdiagnosed in my life, so I know the immeasurable frustration involved in that, but this wasn't one of those times. When I really needed someone to get it right, she did. Spot on. Luck is hard to fathom, good luck and bad; I've been very lucky in many ways in my life, and not a day goes by that I don't know it. Don't know why.... just know that I am. It was an adventure, a bump in the road, I saw it, passed it and now it's behind me, and in that, I'm lucky as well. Not everyone is able to say that, and I'm aware of that too.
wow.... you found a very intelligent colorectal surgeon.... so , if you do not mind, put her name of here for others......you might have already said he name but i feel that it might help others to get to someone who is astute enough to know what this cancer is..... thx....sephie
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not a surgeonsephie said:great surgeon, lach
wow.... you found a very intelligent colorectal surgeon.... so , if you do not mind, put her name of here for others......you might have already said he name but i feel that it might help others to get to someone who is astute enough to know what this cancer is..... thx....sephie
She's not a surgeon; I've not had surgery. She's a gastroenterologist who dx'd my internal 'roids, ablated them and then found, biposied and diagnosed the anal squamous c carcinoma; she's the best of the best of the best, but she isn't a surgeon. I have no recommendations for a colorectal surgeon; I decided early on that I'd not go that route (an ostomy) if it were ever recommended. Fortunately, it wasn't.
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Luck......LaCh said:what happened
No, as I said, I had bleeding, it was evaluated, diagnosed as a hemorroid and treated (ablated) and the bleeding stopped. It started again several months later and was ablated again. Each time the location of the 'roid was different, just as the site of the tumor was different from both hemorroid sites. The bleeding stopped and resumed six months after the second ablation and the third event of bleeding was the tumor. Each episode was independent of the others, was evaluated and treated independently of the others. To say that the hemorroids were misdiagnosed is not the case; they were diagnosed correctly and treated appropriately. Even a layman can see the difference between the two, so to say that a board certified gastroenterologist would mistake them upon visual exam stretches credibility. When an anal tumor is misdiagnosed as a hemorroid, it's generally because someone didn't look, didn't evaluate it, didn't do anything beyond take a history of rectal bleeding. In other words, it's often (not always, but often) not because something was done poorly, it's because nothing was done at all. That's not what happened to me. When I returned for what I assumed was another hemorroid ablation, the tumor was palpated under anesthesia (as I'm told) and then visualized with the scope, and it was immediately evident (to the gastroenterologist) that contrary to what we both assumed, this wasn't another hemorroid. A biopsy was performed and the diagnosis made. What I had was a gastroenterologist who was willing to treat a third incidence of rectal bleeding, despite the potential of being lulled into a false sense of complacency based on a previous history of two hemorroids, was astute enough to recognize that the third time was something all together different from the first two, who had pulled strings to make it possible for me to even go there a third time (remember, there were rules at that time that demanded someone to accompany home anyone receiving anesthesia, and I had no one; without those rules being lifted by her, I'd either be dead by now or well on my way. ) So I've been crazy lucky in many ways, but as far as being misdiagnosed... no. Not in this. As a matter of fact, ironically, I have been misdiagnosed in my life, so I know the immeasurable frustration involved in that, but this wasn't one of those times. When I really needed someone to get it right, she did. Spot on. Luck is hard to fathom, good luck and bad; I've been very lucky in many ways in my life, and not a day goes by that I don't know it. Don't know why.... just know that I am. It was an adventure, a bump in the road, I saw it, passed it and now it's behind me, and in that, I'm lucky as well. Not everyone is able to say that, and I'm aware of that too.
Its often a matter of perspective. I was "lucky" enough to be raised by a family of people who also thought themselves to be mostly lucky in life........and so it continues. The reality is that I too AM really lucky in many many ways.
As far as being diagnosed correctly, I did have symptoms for a long time but never myself suspected anal cancer and was not at all in a high risk group. The day I went in I believed I would be told I needed a hysterectomy, possible some rectal prolapse treatment, and a small pelvic hernia (that was a lymph node). I saw a recommended gyn who after a brief examination stated he thought it may be an anal tumor and immediately got the ball rolling with more tests.......that day! I was lucky!! Only months after my accurate diagnosis, that doctor died of a heart attack while traveling in Ireland, kind of ironic in a discussion on luck.
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Educating doctorseihtak said:Luck......
Its often a matter of perspective. I was "lucky" enough to be raised by a family of people who also thought themselves to be mostly lucky in life........and so it continues. The reality is that I too AM really lucky in many many ways.
As far as being diagnosed correctly, I did have symptoms for a long time but never myself suspected anal cancer and was not at all in a high risk group. The day I went in I believed I would be told I needed a hysterectomy, possible some rectal prolapse treatment, and a small pelvic hernia (that was a lymph node). I saw a recommended gyn who after a brief examination stated he thought it may be an anal tumor and immediately got the ball rolling with more tests.......that day! I was lucky!! Only months after my accurate diagnosis, that doctor died of a heart attack while traveling in Ireland, kind of ironic in a discussion on luck.
Yes, luck certainly plays a role in life! Clearly, some here feel lucky to have had a doctor who correctly diagnosed the anal cancer right away. Sadly, it may be the exception, not the rule. This has to change.
My only point in this whole discussion is that anal cancer patients should not need to rely on being lucky enough to be going to a doctor who recognizes the symptoms right away so lives can be saved. Doctors and the public need to be educated about the symptoms of anal cancer so that treatment can be given in the earliest stage of the disease. I hope that someone can launch a public awareness campaign. That is the only way more lives can be saved!0 -
her nameMarynb said:Educating doctors
Yes, luck certainly plays a role in life! Clearly, some here feel lucky to have had a doctor who correctly diagnosed the anal cancer right away. Sadly, it may be the exception, not the rule. This has to change.
My only point in this whole discussion is that anal cancer patients should not need to rely on being lucky enough to be going to a doctor who recognizes the symptoms right away so lives can be saved. Doctors and the public need to be educated about the symptoms of anal cancer so that treatment can be given in the earliest stage of the disease. I hope that someone can launch a public awareness campaign. That is the only way more lives can be saved!The name of my gastroenterologist is Dr.Julie Foont, of Gotham Gastroenterology, 1317 Third Avenue, NY NY 10021. (212) 570 2075.
Compassionate. Smart. Thinks inside and outside the box. On top of her game. The absolute best.
She's a gastroenterologist, not a surgeon, but most people see a gastroenterologist before they see a surgeon. If the gastroenterologist doesn't see a problem, the patient who requires it (and not all do) never makes it to part two: a surgeon.
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thx , lachLaCh said:her name
The name of my gastroenterologist is Dr.Julie Foont, of Gotham Gastroenterology, 1317 Third Avenue, NY NY 10021. (212) 570 2075.
Compassionate. Smart. Thinks inside and outside the box. On top of her game. The absolute best.
She's a gastroenterologist, not a surgeon, but most people see a gastroenterologist before they see a surgeon. If the gastroenterologist doesn't see a problem, the patient who requires it (and not all do) never makes it to part two: a surgeon.
lach, in my case , even tho we do have gastroenterologists here, i went first to proctologist ( out of yellow pages ) thinking that he could help me.... i thought it was a hemmy....but i am not a doc so depended on him for help .....no help....then went to another town for colorectal surgeon just for second opinion... he told me he could help and put me in hospital and tried to surgically remove the entire tissue that he thought was a tumor but stopped when he determinded that it would damage anal spincter .....i was cut and stitiched from the outside of my anus up into the inside......unbelievable pain for 12 weeks....when biopsy came back scc anal cancer, i went to MD anderson.... at MDA , colorectal surgeon did initial proctoscope and while inside of me looking with the scope ( no anesthesia) asked very loudly "what did they do to you????? " all i could answer was, i think they took biopsy.....he scared me and sort of let me know that he would have done it differently so we now call it the largest biopsy that he has seen... it left lots of scar tissue and inflammation....... i wish i had known about this type of cancer to make better choices of docs...... i really admire your doc.... compassion and intelligence....wow......i am rambling now ...... sephie
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ramble awaysephie said:thx , lach
lach, in my case , even tho we do have gastroenterologists here, i went first to proctologist ( out of yellow pages ) thinking that he could help me.... i thought it was a hemmy....but i am not a doc so depended on him for help .....no help....then went to another town for colorectal surgeon just for second opinion... he told me he could help and put me in hospital and tried to surgically remove the entire tissue that he thought was a tumor but stopped when he determinded that it would damage anal spincter .....i was cut and stitiched from the outside of my anus up into the inside......unbelievable pain for 12 weeks....when biopsy came back scc anal cancer, i went to MD anderson.... at MDA , colorectal surgeon did initial proctoscope and while inside of me looking with the scope ( no anesthesia) asked very loudly "what did they do to you????? " all i could answer was, i think they took biopsy.....he scared me and sort of let me know that he would have done it differently so we now call it the largest biopsy that he has seen... it left lots of scar tissue and inflammation....... i wish i had known about this type of cancer to make better choices of docs...... i really admire your doc.... compassion and intelligence....wow......i am rambling now ...... sephie
ramble away, feel free. it's a bad story for sure. doctors are no different from teachers, from bus drivers, from sanitation men, firemen, cops or zookeepers; some are good, some are bad and some are very good...or very bad. It sounds like you found one of those who...well, I dunno. I can only tell my story; I let other people tell theirs, and more importantly, I let them draw their own conclusions about their own stories. I had two oncologists from hell, really, the both of them, from hell (that's why I fired them both when treatments were finished) but then I had my gastroenterologist, who, really, once the diagnosis was made, had no role in the treatment. That said, she's an angel with whom I'm still in touch. Right now, my issues aren't with the disease; that's gone. My issues are with the cure, which has now become the disease. I'll probably wonder for the rest of my life if I made the right decision in treating the cancer; eight months post treatment, I still don't know. I wish you luck, sephie, I sincerely do. It sounds like you have a real "situation," to be sure. I do wish you luck, better luck than you've had so far.
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lach, well saidLaCh said:ramble away
ramble away, feel free. it's a bad story for sure. doctors are no different from teachers, from bus drivers, from sanitation men, firemen, cops or zookeepers; some are good, some are bad and some are very good...or very bad. It sounds like you found one of those who...well, I dunno. I can only tell my story; I let other people tell theirs, and more importantly, I let them draw their own conclusions about their own stories. I had two oncologists from hell, really, the both of them, from hell (that's why I fired them both when treatments were finished) but then I had my gastroenterologist, who, really, once the diagnosis was made, had no role in the treatment. That said, she's an angel with whom I'm still in touch. Right now, my issues aren't with the disease; that's gone. My issues are with the cure, which has now become the disease. I'll probably wonder for the rest of my life if I made the right decision in treating the cancer; eight months post treatment, I still don't know. I wish you luck, sephie, I sincerely do. It sounds like you have a real "situation," to be sure. I do wish you luck, better luck than you've had so far.
thx for your well wishes.... i totally agree.... my issues are also , now, with the cure which is now the disease----absolutely well said by you............ thx so much for your input..... good luck to you also and to your dog.........hope you decide to go to that forum.... you can stay anonymous.....just listen and give us back what you feel is good info.....sephie
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hey sephiesephie said:lach, well said
thx for your well wishes.... i totally agree.... my issues are also , now, with the cure which is now the disease----absolutely well said by you............ thx so much for your input..... good luck to you also and to your dog.........hope you decide to go to that forum.... you can stay anonymous.....just listen and give us back what you feel is good info.....sephie
You know, I realized for the first time tonight that I'm not the person to ask about stuff.... I put my name on a list for one-on-one peer support (as a mentor to help someone else, since I've already finished tx) but I realized during the talk that I'm definitely not the person to do it. I guess I'm just as strange as I always suspected I was. I'm different. Odd, different. I didn't freak out when I got the diagnosis, I wasn't afraid that I was going to die, I didn't get angry, I don't have ptsd, I don't live in fear that it'll come back, I didn't have people knocking on my door asking me what I needed, (" I never could have gotten through it without the love and support of my friends and family" is what you hear over and over, but I didn't have anyone knocking on my door), I don't have the need or desire to talk about the experience, I don't feel alone with this heavy burden of going through it... I don't share any of the experiences that seemingly, the majority of other people have. Maybe I'm missing a crucial ingredient of something-or-other, I dunno. You've been very kind to me and I really appreciate it. I do hope that your issues resolve, or that you find a way to resolve them, or, barring either of those two things, tthat hey at least become more bearable. The one concrete take-away that I can give you came from a question that I asked after the talk broke up. It was about digestion, since I have almost no ability to digest food anymore, and the info that I got was that 5FU can, in fact, cause motility problems, which is what I have. I want to say thanks again; your kindness to me is a real gift.
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your experience is very valuable to others---LaCh said:hey sephie
You know, I realized for the first time tonight that I'm not the person to ask about stuff.... I put my name on a list for one-on-one peer support (as a mentor to help someone else, since I've already finished tx) but I realized during the talk that I'm definitely not the person to do it. I guess I'm just as strange as I always suspected I was. I'm different. Odd, different. I didn't freak out when I got the diagnosis, I wasn't afraid that I was going to die, I didn't get angry, I don't have ptsd, I don't live in fear that it'll come back, I didn't have people knocking on my door asking me what I needed, (" I never could have gotten through it without the love and support of my friends and family" is what you hear over and over, but I didn't have anyone knocking on my door), I don't have the need or desire to talk about the experience, I don't feel alone with this heavy burden of going through it... I don't share any of the experiences that seemingly, the majority of other people have. Maybe I'm missing a crucial ingredient of something-or-other, I dunno. You've been very kind to me and I really appreciate it. I do hope that your issues resolve, or that you find a way to resolve them, or, barring either of those two things, tthat hey at least become more bearable. The one concrete take-away that I can give you came from a question that I asked after the talk broke up. It was about digestion, since I have almost no ability to digest food anymore, and the info that I got was that 5FU can, in fact, cause motility problems, which is what I have. I want to say thanks again; your kindness to me is a real gift.
lach, even tho it is the majority, not everyone has the love of friends and family to help them---- you just hear about those.... i guarantee that there are some who travel this road by themselves.... they will need you to let them know that it is doable without others helping ( only if you want to).....i think that it is GREAT that you do not worry about it coming back.....i ,also, did not freak out when i got the diagnosis , i was not afraid that i was going to die, I did not get angry.... i really did not have but one person knocking on my door to help for whom, i am grateful....i was left alone at MD anderson monday - friday but did have the hubby the other 2 days ( he was there on some weekends which is not the tx days).....you are not missing any crucial ingredient..... you have gone thru it the right way for your life circumstances....you made it.... you did it.....i still think you will be valuable as one on one peer....i, actually, was disappointed by one friend who did not really help at all--- i expected too much....that if my mistake, .i hope your digestion gets better...... and thanks again to you ,,, you are a gift to me also,,,,,,, sephie
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Well said Sephie.. I didsephie said:your experience is very valuable to others---
lach, even tho it is the majority, not everyone has the love of friends and family to help them---- you just hear about those.... i guarantee that there are some who travel this road by themselves.... they will need you to let them know that it is doable without others helping ( only if you want to).....i think that it is GREAT that you do not worry about it coming back.....i ,also, did not freak out when i got the diagnosis , i was not afraid that i was going to die, I did not get angry.... i really did not have but one person knocking on my door to help for whom, i am grateful....i was left alone at MD anderson monday - friday but did have the hubby the other 2 days ( he was there on some weekends which is not the tx days).....you are not missing any crucial ingredient..... you have gone thru it the right way for your life circumstances....you made it.... you did it.....i still think you will be valuable as one on one peer....i, actually, was disappointed by one friend who did not really help at all--- i expected too much....that if my mistake, .i hope your digestion gets better...... and thanks again to you ,,, you are a gift to me also,,,,,,, sephie
Well said Sephie.. I did have my husband with me for the three months of txs.. And know how blessed I am... However I go for check ups every three months by myself. It gets way too expensive with two plane tickets, etc, etc. and truth be known, all I want is to be is left alone, a pitcher of iced tea and my thoughts and a book. Not worrying that someone is ok, or not bored... truly, a great deal of that summers memories have faded. Thank you Lord!
Lacha, different is not a bad thing. Not being afraid to take care of yourself is awesome, and being able to share the fact that you can do that ON YOUR OWN is wonderful knowledge to share with others. There are many, many people who, as they get older, need other people less.. I'm 62 now and enjoy my own company. 10 years ago I felt as though every day had to be filled with people and activities... Now? Not so much.... Still like my friends and family with which I am blessed (at least most of the time).. Well in too many words I said "variety is a good thing"!
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LaChLaCh said:hey sephie
You know, I realized for the first time tonight that I'm not the person to ask about stuff.... I put my name on a list for one-on-one peer support (as a mentor to help someone else, since I've already finished tx) but I realized during the talk that I'm definitely not the person to do it. I guess I'm just as strange as I always suspected I was. I'm different. Odd, different. I didn't freak out when I got the diagnosis, I wasn't afraid that I was going to die, I didn't get angry, I don't have ptsd, I don't live in fear that it'll come back, I didn't have people knocking on my door asking me what I needed, (" I never could have gotten through it without the love and support of my friends and family" is what you hear over and over, but I didn't have anyone knocking on my door), I don't have the need or desire to talk about the experience, I don't feel alone with this heavy burden of going through it... I don't share any of the experiences that seemingly, the majority of other people have. Maybe I'm missing a crucial ingredient of something-or-other, I dunno. You've been very kind to me and I really appreciate it. I do hope that your issues resolve, or that you find a way to resolve them, or, barring either of those two things, tthat hey at least become more bearable. The one concrete take-away that I can give you came from a question that I asked after the talk broke up. It was about digestion, since I have almost no ability to digest food anymore, and the info that I got was that 5FU can, in fact, cause motility problems, which is what I have. I want to say thanks again; your kindness to me is a real gift.
I live alone too! Many people go through cancer treatments alone. We are all different, really. Thank God for that! I am sure you could be a good match for someone going through cancer treatments alone in the city. That is really kind of you to do that!0 -
LaChMarynb said:LaCh
I live alone too! Many people go through cancer treatments alone. We are all different, really. Thank God for that! I am sure you could be a good match for someone going through cancer treatments alone in the city. That is really kind of you to do that!Going through treatment with friends & family around is complex, or was for me. They wanted to be supportive, & were to an extent, but also my very close family had their own difficulties at the time. It meant that I had to be supportive for them too, & worrying about them was maybe not the best, but it was what it was, & I am thankful that they love me enough to want tobe there for me.
We are all different. Our journeys through life are all different, & we all have our own 'oddness'.
Doubting your appropriateness to be a support is understandable, only from the point of maybe, you not knowing what help another person wants or needs. As someone who appears to strongly need to protect their independence, you might very well be the most appropriate person to give that support to another likeminded individual. Someone who won't 'ooh & aah', but give factual advice. You have strengths that are to be admired. There is a reason we are not all the same!
Vive le difference
Liz
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Lachpializ said:LaCh
Going through treatment with friends & family around is complex, or was for me. They wanted to be supportive, & were to an extent, but also my very close family had their own difficulties at the time. It meant that I had to be supportive for them too, & worrying about them was maybe not the best, but it was what it was, & I am thankful that they love me enough to want tobe there for me.
We are all different. Our journeys through life are all different, & we all have our own 'oddness'.
Doubting your appropriateness to be a support is understandable, only from the point of maybe, you not knowing what help another person wants or needs. As someone who appears to strongly need to protect their independence, you might very well be the most appropriate person to give that support to another likeminded individual. Someone who won't 'ooh & aah', but give factual advice. You have strengths that are to be admired. There is a reason we are not all the same!
Vive le difference
Liz
Thanks for the info on motility and 5 fu. Now I know what's wrong. Did they give you any info whether it could improve?
This was not the case for the first two years. It will be 1 year 11/1 for the motility issues. I mention that because maybe it will change for you in the future. Everything is so unpredictable .
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motility and 5 FUPhoebesnow said:Lach
Thanks for the info on motility and 5 fu. Now I know what's wrong. Did they give you any info whether it could improve?
This was not the case for the first two years. It will be 1 year 11/1 for the motility issues. I mention that because maybe it will change for you in the future. Everything is so unpredictable .
Man, I wish there were something to offer. This wasn't even addressed during the talk, I asked it afterwards, and even after the group Q&A, in a face-to-face with the presenter. She said that there are drugs that can increase motility, one of which was Reglan, I believe, whose side effects include tardive dyskinesia. Great, I thought, yet another brilliant solution that solves one problem and gives me a new one. I also have cognitive issues...the list goes on. My cure has now become my disease.
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marynbMarynb said:LaCh
I live alone too! Many people go through cancer treatments alone. We are all different, really. Thank God for that! I am sure you could be a good match for someone going through cancer treatments alone in the city. That is really kind of you to do that!It's more than just living alone. I have an outlook so vastly different from others' that I'd be more detrimental than helpful. During the talk, things like anger, ptsd, fear of recurrence, fear of death, anxiety, all manner of things that I didn't feel were mentioned. I'd do more harm than good for another person going through the dx and tx. I'd already put my name on the list, but when they call, if they call, I'll tell them that I don't feel that I'd be well-suited for something like that. To be honest, I went to the talk as a way to get information for the problems that I'm having, but have no desire or need to talk about my cancer experience or hang out with people who've been through this cancer with this treatment any more than I want to talk about the two years that followed my bout with pertissis (whopping cough) or my emergency appendectomy. I just don't have the interest or the need. I don't know how to put it without seeming unappreciative but... it's like, here are these kind people (the doctors and support staff at the presentation) who were extending a hand of loving support for issues that I don't have. For those who feel alone, for those who want to talk about it or need to talk about it, I think those acts of selfless generosity are like gold... I just don't have the need. For me (except for the problems from the cure) it's over. I don't dwell on it, and the truth is, I hardly even remember it.
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pializpializ said:LaCh
Going through treatment with friends & family around is complex, or was for me. They wanted to be supportive, & were to an extent, but also my very close family had their own difficulties at the time. It meant that I had to be supportive for them too, & worrying about them was maybe not the best, but it was what it was, & I am thankful that they love me enough to want tobe there for me.
We are all different. Our journeys through life are all different, & we all have our own 'oddness'.
Doubting your appropriateness to be a support is understandable, only from the point of maybe, you not knowing what help another person wants or needs. As someone who appears to strongly need to protect their independence, you might very well be the most appropriate person to give that support to another likeminded individual. Someone who won't 'ooh & aah', but give factual advice. You have strengths that are to be admired. There is a reason we are not all the same!
Vive le difference
Liz
Going through treatment with friends & family around is complex, or was for me.
<<<<<<<<<< there's no doubt about that. I was glad to be alone. Very soon after the treatments started, I started having pain going to the bathroom and that quickly escalated to the point of having to cover my mouth with a towel so the neighbors wouldn't hear me scream. (I had a tear inside). I SURE didn't want anyone in the house with me.
They wanted to be supportive, & were to an extent, but also my very close family had their own difficulties at the time. It meant that I had to be supportive for them too, & worrying about them was maybe not the best, but it was what it was, & I am thankful that they love me enough to want tobe there for me.
>>>>>>>>>> Well, yes, it's nice to know that people care and for many, the way to "care" is to "do". I remember feeling lucky that I was alone, although it did present some challenges, especially towards the end.
We are all different. Our journeys through life are all different, & we all have our own 'oddness'.
>>>>>>> ja ja ja well, I suppose. But there's odd and then there's ODD. I think I probably fall into the latter category.
Doubting your appropriateness to be a support is understandable, only from the point of maybe, you not knowing what help another person wants or needs. As someone who appears to strongly need to protect their independence, you might very well be the most appropriate person to give that support to another likeminded individual. Someone who won't 'ooh & aah', but give factual advice. You have strengths that are to be admired. There is a reason we are not all the same.
<<<<<<<<<<That's very kind... really, very kind. I suppose... I dunno. I think that the majority want ... well, I dunno what the majority wants... I just have a feeling that the way that i did it... 5th floor walk-up, alone, with a dog to walk... required the suck-it-up method, and that's in general, how I operate. That's not very helpful to other people. I'd have to be very very sure that I wouldn't do more harm than good to someone going through this experience. Even if it's saying, "Hey, as bad as this is, it could be worse..." or something like that, well, that's not real helpful. And while I could certainly restrain myself from saying something like that, I'm not the ooo and ahh type or person. I can certainly emphathize, and do, but in my own way, in my own style. I'm practical. Not without empathy. Just practical. Sometimes people don't want practical. I dunno. There's nothing to decide today.
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Anal PAPLaCh said:need to clarify
I need to clarify: I was never misdiagnosed. I had internal hemmoriods that were ablated by my gastroenterologist, they returned, she ablated them again, and the bleeding returned six months after the second ablation. I let it go another few months due to new rules that required someone to accompaiy me home after the anesthetic proceedure; since there was no one, I was the one who figured, "This can wait." When the rule was lifted (when my gastroenterologist insisted that it be lifted) I went back for what we both thought was a third ablation of internal hemmoroids; as soon as I was anesthetized, she looked, knew it was cancer, did a biopsy to confirm and the rest is history. But at no time was I blown off or misdiagnosed.
i just want to take a step back to. "At risk or risk factors " for anal cancer. Any sexually active person is at risk for anal cancer. Every woman who is sexually active is recommended to have and receive a cervical PAP ... Usually a dual test to also screen for high risk HPV strains. I am a proponent of anal PAP screening for all sexually active men and women. Early identification is key, when there is dysplasia or atypical cells which can be a treated and destroyed. Rectal Bleeding ... Bright red blood, is actually a later symptom of cancer and could be related to so many different causes clouding early diagnosis: hemorrhoids, fissure, solitary ulcer, etc. Unfortunately, insurance companies may not pay for an additional preventive study. Sadly.
And I demanded the tumor be tested for HPV ... Even tho I NEVER tested positive for HPV in the 25 years I had PAPs with the HPV dual test (When that came available). The tumor was strongly positive for HPV 16 .... and I'd been monogamous and my hubby too for over 20 years. So ... "Never " positive for HPV may not mean anything ... Request the tumor be tested .... Insurance paid and it may be good for you if you have a need to know. And it was important for me to know. And ... ongoing recent cervical PAP tests are still negative. Okay ... Long story short ... I support anal pap for all sexually active people. And, anal sex is not a necessary part of sexual life to inoculate the anus with HPV ... It migrates in secretions and menstruation, toys and hands. Things to think about .... Remember , most squamous cell cervical cancer is related to HPV ....
I also support the HPV vaccine . I also want to say this is my opinion after reading and researching anal cancer , oral cancer and cervical cancer. That being said, your cancer care team is your best resource re; questions about anal cancer.
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Paps7243 said:Anal PAP
i just want to take a step back to. "At risk or risk factors " for anal cancer. Any sexually active person is at risk for anal cancer. Every woman who is sexually active is recommended to have and receive a cervical PAP ... Usually a dual test to also screen for high risk HPV strains. I am a proponent of anal PAP screening for all sexually active men and women. Early identification is key, when there is dysplasia or atypical cells which can be a treated and destroyed. Rectal Bleeding ... Bright red blood, is actually a later symptom of cancer and could be related to so many different causes clouding early diagnosis: hemorrhoids, fissure, solitary ulcer, etc. Unfortunately, insurance companies may not pay for an additional preventive study. Sadly.
And I demanded the tumor be tested for HPV ... Even tho I NEVER tested positive for HPV in the 25 years I had PAPs with the HPV dual test (When that came available). The tumor was strongly positive for HPV 16 .... and I'd been monogamous and my hubby too for over 20 years. So ... "Never " positive for HPV may not mean anything ... Request the tumor be tested .... Insurance paid and it may be good for you if you have a need to know. And it was important for me to know. And ... ongoing recent cervical PAP tests are still negative. Okay ... Long story short ... I support anal pap for all sexually active people. And, anal sex is not a necessary part of sexual life to inoculate the anus with HPV ... It migrates in secretions and menstruation, toys and hands. Things to think about .... Remember , most squamous cell cervical cancer is related to HPV ....
I also support the HPV vaccine . I also want to say this is my opinion after reading and researching anal cancer , oral cancer and cervical cancer. That being said, your cancer care team is your best resource re; questions about anal cancer.
Hi 7243. Thanks for this. I have been wondering whether a person who had HPV related anal cancer is also at risk for HPV related cancers in other parts of the body, like throat, uterine, etc.? As far as I know, I am not being monitored for HPV at this time.0 -
PapMarynb said:Paps
Hi 7243. Thanks for this. I have been wondering whether a person who had HPV related anal cancer is also at risk for HPV related cancers in other parts of the body, like throat, uterine, etc.? As far as I know, I am not being monitored for HPV at this time.Hi marynb!
after treatment we're followed closely re; for recurrence of cancer. Anal PAP not something they do ... However, if u still have your uterus you should have PAPs. Generally they do a combined pap and hi risk HPV as part if that test. Perhaps ask your Gyn practitioner about this. There are differing opinions re; anal cancer. Keep in mind it is a "rare" cancer, low volume and not a lot if money goes toward it for research ... Unlike other cancers. But there is good info on the UCSF site and this physician has done much work with dysplasia and HPV ...
read more about the work if dr Joel palefsky at UCSF.
http://www.ucsfhealth.org/joel.palefsky
as always, each of our medical circumstances are unique ... Good to hear from you!
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