Husband just diagnosed - with perineural invasion
Hello Everyone,
I write in sadness but with gratitude, for having found my way to this network. The posts that I have seen here so far have been so helpful and heartfelt.... So first and foremost, I want to send out good vibes and best wishes to all of you on your individual and shared journeys with this illness.
In short- I am here not for myself, but for my husband. His biopsy has just come back positive for anal cancer. I was given the biopsy results yesterday through a friend of a friend at the hospital, which I thought was so cool at first... until I realized that I had a bunch of scientific gobbledeeguk in my hands without much guidance as to what it means. My husband's doctor has not reviewed the report yet, and I can already see that I'll be spending most of this Thanksgiving holiday ruminating, re-reading, researching, (and therefore suffering over) the results myself.
To that end, anyone here have experience with perineural invasion? Any clear sense of whether it means that the cancer will spread more aggressively? My sense from what I have read is that it can be a sign of how invasive the cancer is, but not necessarily how diffuse or spread out it might be. The biopsy report says that there was no vascular invasion, for what it is worth. Biopsy also says the cells are "moderately/poorly differentiated." Not sure what to think about that either.... Any guidance?
As for treatment, it seems my husband will start the process within the next few weeks. We've had only the biopsy. Some people say I'm supposed to have the scan done first for him at our regular hospital. Some say wait until Sloan can do the scan. So, i guess a second area of concern I have is the sequencing of this whole process. So it it biopsy-then meeting with the oncologist- then the radiologist-then scan? Or is it biopsy-then scan-then oncologist?
Please forgive the emphasis on the minutae. Focusing on the details has really helped keep me in the here and now, and not look too far in the future at that vast mountain range that awaits....
Carolyn A.
Comments
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Carolyn
First of all, I am sorry that you and your husband had to find this site due to your circumstances, but happy that you did because you will find that the people here are very caring and helpful. I have not heard of perineural relative to anal cancer. From what I know, it has been associated with rectal cancer. Since anal cancer is very rare compared to many other cancers, my first question to the doctors would be to ask if they are absolutely sure it is anal versus rectal. I myself was misdiagonsed 6 plus years ago as having rectal versus anal cancer. I then went to MD Anderson in Texas and it was confirmed that I had stage III squamous cell anal cancer. I too had poorly differentiated cells. I also had perirectal lymph node involvement. The initial diagnosis is frightening and all consuming. If you are already dealing with Sloan, then it is likely they will follow up with additional scans. I can't imagine that they would send you back to your local hospital for that. Your husband will most likely undergo a PET and/or CT scan, different "scopes", blood work, check x-rays or a chest CT scan. When you meet with the doctor, also ask them to clarify that if it is anal cancer, is it squamous cell, basil cell or andeocarcinoma. (likely I misspelled the latter).
If it is in fact anal cancer, please know that there is hope. The treatment is rough, but we get through it. Everyone here will be available to support you and your husband through the process. If you can, try to write down all your questions before you meet with the doctors.
Please keep us posted as you learn more. In the meantime, God be with you and grant you strength.
Liz
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Carolyn
I am sorry that your husband's diagnosis has brought you here, but I welcome you and hope that you'll find this site both supportive and informative. It's great that you are already seeking as much information as you can early on.
As regards the biopsy report, it would be helpful to know what type of cancer cells were identied. Most anal cancers are squamous cell, a type of skin cancer. However, there are other types, including adenocarcinoma, which usually is found in the glands that surround the anal canal, and melanoma. Squamous cell has the highest rate of successful treatment.
I do not know anything about perineural invasion, but that sounds to me like cancer cells were found in the nerves in the area. I would definitely seek explanation from your husband's doctor(s). No vascular invasion would seem to me to be a reference to the blood vessels in the area of the biopsy, which sounds like good news to me. That the cells are noted to be "moderately/poorly differentiated" refers to how much they have invaded or "mingled with," if you will, the surrounding good cells. The lines of demarcation between the good cells and the bad cells are essentially blurred, making it difficult to "differentiate" between the two.
I was treated in 2008 and had very little knowledge about anal cancer at that time. I basically turned it all over to my doctors. Luckily, I was blessed with a great colorectal doctor, medical oncologist and radiation oncologist. My medical oncologist was the ring leader, so to speak. I was diagnosed in June by my colorectal doctor and she made the referral to the medical oncologist, who was the doctor in charge of my treatment. I saw him in early July, at which time he ordered my PET scan for staging. If your husband's medical oncologist is going to be located at Sloan, he/she will probably prefer to have your husband get the scan at that facility. Doctors at a particular facility are more familiar with the other doctors there, such as the radiologists who regularly read scans on their patients. Do you have an appointment secured with an oncologist at Sloan? A good question to ask them when scheduling the appointment is if that doctor will want to order the staging scan there. My guess is yes. So, I guess to answer your question, in my case, it was first the biopsy (by the colorectal surgeon), then initial appointment with the medical oncologist (who then ordered the scan), followed by initial appointment with the radiation oncologist. I was officially diagnosed on June 22, 2008, as per the biopsy results, and did not begin treatment until July 28. It took some time to get all the appointments scheduled, the scan and simulation at the radiation center prior to beginning treatment.
I will touch on the subject of time for a second. I so remember getting quite impatient about how long it was taking to get treatment under way. However, now I know that the process of correct diagnosis, staging and set-up for radiation treatment takes some time. It was about 5 weeks for me and it seemed like an eternity. If this happens to be the case for you and your husband, keep in mind that his healthcare team needs to get everything right with the treatment plan, as there are no do-overs.
I am going to list some websites for you to check out for some good information.
www.NCCN.org This website will require a brief registration, which will then allow you to access the latest treatment guidelines for anal cancer, along with lots of good information about the disease, staging, etc. It really is a good source of information that will allow you to be more informed when you go to the appointments with the doctors.
www.analcancerhelp.info This website was started by a friend of mine on another site. She has compiled lots of good information about how to deal with side effects of treatment, etc. It is a great source of information from the patient's side. I believe she also has some good links posted on there for additional resources. You will find that sometimes we know more than the doctors do about handling the various possible side effects.
Your husband will get through this, especially since he has such a supportive spouse! My husband did no research of any kind and still does not know much about this disease after all these years. But he held my hand when I was sick and cleaned up after me when I needed him to. You will be of great help to your husband, but do not forget to take care of yourself during this time. If you get frustrated and need to vent, come here and let it out. We will listen and try our best to comfort you. Sometimes the caregivers get little or no attention, but we will lift you up as much as is virtually possible.
I wish you both the very best and hope you'll keep us posted as things move toward your husband's treatment. You will both get through this!
Martha
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For Liz and Martha- My sincerest thanksmp327 said:Carolyn
I am sorry that your husband's diagnosis has brought you here, but I welcome you and hope that you'll find this site both supportive and informative. It's great that you are already seeking as much information as you can early on.
As regards the biopsy report, it would be helpful to know what type of cancer cells were identied. Most anal cancers are squamous cell, a type of skin cancer. However, there are other types, including adenocarcinoma, which usually is found in the glands that surround the anal canal, and melanoma. Squamous cell has the highest rate of successful treatment.
I do not know anything about perineural invasion, but that sounds to me like cancer cells were found in the nerves in the area. I would definitely seek explanation from your husband's doctor(s). No vascular invasion would seem to me to be a reference to the blood vessels in the area of the biopsy, which sounds like good news to me. That the cells are noted to be "moderately/poorly differentiated" refers to how much they have invaded or "mingled with," if you will, the surrounding good cells. The lines of demarcation between the good cells and the bad cells are essentially blurred, making it difficult to "differentiate" between the two.
I was treated in 2008 and had very little knowledge about anal cancer at that time. I basically turned it all over to my doctors. Luckily, I was blessed with a great colorectal doctor, medical oncologist and radiation oncologist. My medical oncologist was the ring leader, so to speak. I was diagnosed in June by my colorectal doctor and she made the referral to the medical oncologist, who was the doctor in charge of my treatment. I saw him in early July, at which time he ordered my PET scan for staging. If your husband's medical oncologist is going to be located at Sloan, he/she will probably prefer to have your husband get the scan at that facility. Doctors at a particular facility are more familiar with the other doctors there, such as the radiologists who regularly read scans on their patients. Do you have an appointment secured with an oncologist at Sloan? A good question to ask them when scheduling the appointment is if that doctor will want to order the staging scan there. My guess is yes. So, I guess to answer your question, in my case, it was first the biopsy (by the colorectal surgeon), then initial appointment with the medical oncologist (who then ordered the scan), followed by initial appointment with the radiation oncologist. I was officially diagnosed on June 22, 2008, as per the biopsy results, and did not begin treatment until July 28. It took some time to get all the appointments scheduled, the scan and simulation at the radiation center prior to beginning treatment.
I will touch on the subject of time for a second. I so remember getting quite impatient about how long it was taking to get treatment under way. However, now I know that the process of correct diagnosis, staging and set-up for radiation treatment takes some time. It was about 5 weeks for me and it seemed like an eternity. If this happens to be the case for you and your husband, keep in mind that his healthcare team needs to get everything right with the treatment plan, as there are no do-overs.
I am going to list some websites for you to check out for some good information.
www.NCCN.org This website will require a brief registration, which will then allow you to access the latest treatment guidelines for anal cancer, along with lots of good information about the disease, staging, etc. It really is a good source of information that will allow you to be more informed when you go to the appointments with the doctors.
www.analcancerhelp.info This website was started by a friend of mine on another site. She has compiled lots of good information about how to deal with side effects of treatment, etc. It is a great source of information from the patient's side. I believe she also has some good links posted on there for additional resources. You will find that sometimes we know more than the doctors do about handling the various possible side effects.
Your husband will get through this, especially since he has such a supportive spouse! My husband did no research of any kind and still does not know much about this disease after all these years. But he held my hand when I was sick and cleaned up after me when I needed him to. You will be of great help to your husband, but do not forget to take care of yourself during this time. If you get frustrated and need to vent, come here and let it out. We will listen and try our best to comfort you. Sometimes the caregivers get little or no attention, but we will lift you up as much as is virtually possible.
I wish you both the very best and hope you'll keep us posted as things move toward your husband's treatment. You will both get through this!
Martha
Liz and Martha-
Thank you for your speedy and informative posts, and most especially for your words of comfort. My husband has the "invasive squamous cell carcinoma" variety of anal cancer. Jeez, it is still so surreal to type those words, and to realize how this disease...this uninvited guest... has intruded on our happy home. We have little kids, we have wacky pets, we have laughter, and we now have what feels like a horrendous black cloud hovering over it all. But I'm trying to keep it together. Trying not to let the kids catch me getting teary as I watch my usually energetic husband take his third nap of the day... The pain from the biopsy site is really intense, and I think he said he's getting nerve pain up and down his legs from this. I told him to just take the painkillers and sleep through the anxiety and pain of this limbo time prior to our oncology appointment. That's what the surgeon told him to do (gave him 60 oxycodone tablets- I guess that was the first clue that this would be a painful time) so that's probably the best approach.
Anyway, thank you for listening/reading. Oncologist appointment will be within a week or so. I've been told that things move pretty quickly after that. Any sense of whether my husband will be able to work and exercise through the chemo/radiation regimen that is typically recommended for this type of cancer? If you work outside the home, were you able to continue more or less with your usual schedule? Since the radiation will not be given over the weekends, should we expect that he will feel better at least on Saturdays and Sundays as opposed to the rest of the week?
Thanks again....
Carolyn
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CarolynTheNewNormal said:For Liz and Martha- My sincerest thanks
Liz and Martha-
Thank you for your speedy and informative posts, and most especially for your words of comfort. My husband has the "invasive squamous cell carcinoma" variety of anal cancer. Jeez, it is still so surreal to type those words, and to realize how this disease...this uninvited guest... has intruded on our happy home. We have little kids, we have wacky pets, we have laughter, and we now have what feels like a horrendous black cloud hovering over it all. But I'm trying to keep it together. Trying not to let the kids catch me getting teary as I watch my usually energetic husband take his third nap of the day... The pain from the biopsy site is really intense, and I think he said he's getting nerve pain up and down his legs from this. I told him to just take the painkillers and sleep through the anxiety and pain of this limbo time prior to our oncology appointment. That's what the surgeon told him to do (gave him 60 oxycodone tablets- I guess that was the first clue that this would be a painful time) so that's probably the best approach.
Anyway, thank you for listening/reading. Oncologist appointment will be within a week or so. I've been told that things move pretty quickly after that. Any sense of whether my husband will be able to work and exercise through the chemo/radiation regimen that is typically recommended for this type of cancer? If you work outside the home, were you able to continue more or less with your usual schedule? Since the radiation will not be given over the weekends, should we expect that he will feel better at least on Saturdays and Sundays as opposed to the rest of the week?
Thanks again....
Carolyn
Carolyn,
It is hard to say if your husband will be able to work while in treatment. I coudn't, but everyone is different. I had radiation every day for almost seven weeks, plus a chemo pump 24X7 and then another chemo infusion every Monday for the same duration. But others have had different treatment and the chemo and radiation were spread out. Either way, the treatment is tough. They have come a long way in helping with the nausea from chemo and I'm sure your husband's doctor will discuss that with you both. The radiation can cause discomfort - burns and bowel issues. In the beginning it's not to bad, but then it get's more challenging as it progresses. It also can cause extreme fatigue. While going through chemo, avoiding infection is very important as well. I don't write this to scare you or to be callous in any way, I just want to be honest with you. When I was diagonosed, I didn't know anyone who had had anal cancer, this support group didn't exist and I didn't know what to expect.
It would be worth exploring short term disability if your husband is employed by a company that provides it. Just to know your options. Focusing on getting through treatment will be a priority and it may be difficult to work at the same time.
I know this is a scary journey for you both. Taking it "one day at a time" may be a cliche, but honestly that is what it comes down to right now. The people on this board are a testament that this dreaded disease can be tackled, although it can be a roller coaster ride. I'm so sorry that your husband is in pain and I will keep you all in my prayers.
Everyone here is great and I hope you will stay in touch so that we can help support you along the way.
Wishing you strength,
Liz
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CarolynTheNewNormal said:For Liz and Martha- My sincerest thanks
Liz and Martha-
Thank you for your speedy and informative posts, and most especially for your words of comfort. My husband has the "invasive squamous cell carcinoma" variety of anal cancer. Jeez, it is still so surreal to type those words, and to realize how this disease...this uninvited guest... has intruded on our happy home. We have little kids, we have wacky pets, we have laughter, and we now have what feels like a horrendous black cloud hovering over it all. But I'm trying to keep it together. Trying not to let the kids catch me getting teary as I watch my usually energetic husband take his third nap of the day... The pain from the biopsy site is really intense, and I think he said he's getting nerve pain up and down his legs from this. I told him to just take the painkillers and sleep through the anxiety and pain of this limbo time prior to our oncology appointment. That's what the surgeon told him to do (gave him 60 oxycodone tablets- I guess that was the first clue that this would be a painful time) so that's probably the best approach.
Anyway, thank you for listening/reading. Oncologist appointment will be within a week or so. I've been told that things move pretty quickly after that. Any sense of whether my husband will be able to work and exercise through the chemo/radiation regimen that is typically recommended for this type of cancer? If you work outside the home, were you able to continue more or less with your usual schedule? Since the radiation will not be given over the weekends, should we expect that he will feel better at least on Saturdays and Sundays as opposed to the rest of the week?
Thanks again....
Carolyn
To respond to your question about your husband continuing to work through treatment, some people report that they are able. I was not employed at the time I got treatment, but had I been, I would have been unable to continue after perhaps the second week, and that may be stretching it. I was very fatigued and had diarrhea so bad. But my experience will not be the same as your husband's. As Liz said, it requires a person to take it one day at a time. The effects of treatment are cumulative, so as he gets further into it, the side effects will probably worsen. That's the way it is for most of us, but degree of severity varies from person to person. I would suggest, as Liz has, that he look into short-term disability benefits just in case.
Having two days off over the weekends didn't make much difference in the way I felt during treatment. The main perk with weekends was not having to get cleaned up and dressed to go to treatment and being able to just sleep all day. I got very fatigued and just getting ready to go to treatment was exhausting, especially in the last weeks.
I'm glad he is already prescribed pain medication for the biopsy pain. I would advise him to make sure he gets pain medication for use during treatment and to not do what I did--try to gut it out. I do not recommend that and I so wish I had medicated myself enough to lessen the pain.
Please keep us posted.
Martha
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Managing expectationsmp327 said:Carolyn
To respond to your question about your husband continuing to work through treatment, some people report that they are able. I was not employed at the time I got treatment, but had I been, I would have been unable to continue after perhaps the second week, and that may be stretching it. I was very fatigued and had diarrhea so bad. But my experience will not be the same as your husband's. As Liz said, it requires a person to take it one day at a time. The effects of treatment are cumulative, so as he gets further into it, the side effects will probably worsen. That's the way it is for most of us, but degree of severity varies from person to person. I would suggest, as Liz has, that he look into short-term disability benefits just in case.
Having two days off over the weekends didn't make much difference in the way I felt during treatment. The main perk with weekends was not having to get cleaned up and dressed to go to treatment and being able to just sleep all day. I got very fatigued and just getting ready to go to treatment was exhausting, especially in the last weeks.
I'm glad he is already prescribed pain medication for the biopsy pain. I would advise him to make sure he gets pain medication for use during treatment and to not do what I did--try to gut it out. I do not recommend that and I so wish I had medicated myself enough to lessen the pain.
Please keep us posted.
Martha
Thanks so much for the responses. The honesty is exactly what I need, and your experiences have given me a good sense for what lies ahead. We have a few cancer survivors in the family, but as they had different kinds of cancer, I can now see that the experiences they had with chemo/radiation are simply not going to serve as good comparisons for this one. Given that, I will use the next few weeks to get things in order, such as playdates for the kids, extra housekeeping help, etc. I will also talk to my husband about curtailing his work schedule during (and following) treatment. It's going to be so hard, especially because we are both such hyperactive, type A personalities...
He says the pain from the site is really bad today. It's already a fistula with pus, etc., so I cannot even fathom how that's going to feel during radiation. MD says he may need some sort of surgery following the treatment to repair the site. In the meantime, I've been reading the posts about soothing creams and balms with close attention.... Sigh.
In the meantime, thanks for all of the thoughts and prayers. For all of the negatives that have come with this diagnosis, I am starting to see many positives too. Almost as a protective mechanism, your brain adjusts from typical "long range thinking" to very much "here and now thinking." I didn't really do much to affirmatively change my worldview in that way. it just spontaneously happened a few mornings ago, and the change has stuck with me. Here and now. Not a bad thing...eh?
Sending good vibes out to all of you...
More soon.
Carolyn
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CarolynTheNewNormal said:Managing expectations
Thanks so much for the responses. The honesty is exactly what I need, and your experiences have given me a good sense for what lies ahead. We have a few cancer survivors in the family, but as they had different kinds of cancer, I can now see that the experiences they had with chemo/radiation are simply not going to serve as good comparisons for this one. Given that, I will use the next few weeks to get things in order, such as playdates for the kids, extra housekeeping help, etc. I will also talk to my husband about curtailing his work schedule during (and following) treatment. It's going to be so hard, especially because we are both such hyperactive, type A personalities...
He says the pain from the site is really bad today. It's already a fistula with pus, etc., so I cannot even fathom how that's going to feel during radiation. MD says he may need some sort of surgery following the treatment to repair the site. In the meantime, I've been reading the posts about soothing creams and balms with close attention.... Sigh.
In the meantime, thanks for all of the thoughts and prayers. For all of the negatives that have come with this diagnosis, I am starting to see many positives too. Almost as a protective mechanism, your brain adjusts from typical "long range thinking" to very much "here and now thinking." I didn't really do much to affirmatively change my worldview in that way. it just spontaneously happened a few mornings ago, and the change has stuck with me. Here and now. Not a bad thing...eh?
Sending good vibes out to all of you...
More soon.
Carolyn
I think you have the right perspective, taking things as they come and trying not to think too far ahead right now. Neither of you know how your husband will tolerate treatment and perhaps he will be one of those who has few side effects, especially if he was in good physical condition prior to his diagnosis. I am a runner and also lift weights, which I was doing before I found out about my cancer. I think my degree of fitness was a benefit and I was back on my treadmill 10 days after treatment, albeit at a much slower pace! Your husband will get through this and so will you!
Martha
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I had he exact treatment LizTheNewNormal said:For Liz and Martha- My sincerest thanks
Liz and Martha-
Thank you for your speedy and informative posts, and most especially for your words of comfort. My husband has the "invasive squamous cell carcinoma" variety of anal cancer. Jeez, it is still so surreal to type those words, and to realize how this disease...this uninvited guest... has intruded on our happy home. We have little kids, we have wacky pets, we have laughter, and we now have what feels like a horrendous black cloud hovering over it all. But I'm trying to keep it together. Trying not to let the kids catch me getting teary as I watch my usually energetic husband take his third nap of the day... The pain from the biopsy site is really intense, and I think he said he's getting nerve pain up and down his legs from this. I told him to just take the painkillers and sleep through the anxiety and pain of this limbo time prior to our oncology appointment. That's what the surgeon told him to do (gave him 60 oxycodone tablets- I guess that was the first clue that this would be a painful time) so that's probably the best approach.
Anyway, thank you for listening/reading. Oncologist appointment will be within a week or so. I've been told that things move pretty quickly after that. Any sense of whether my husband will be able to work and exercise through the chemo/radiation regimen that is typically recommended for this type of cancer? If you work outside the home, were you able to continue more or less with your usual schedule? Since the radiation will not be given over the weekends, should we expect that he will feel better at least on Saturdays and Sundays as opposed to the rest of the week?
Thanks again....
Carolyn
I had he exact treatment Liz had with the same Doctors so will not repeat. And no I could not have worked through treatment either. repeating one more time, every one is different.. Wishing y'all good luck..
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Carolyn
An unfortunate welcome to you. As always, the others have given a good overview.
I was fortunate to be able to be off work from the time of tumor removal/biopsy was done unitl a few weeks post treatment. I was grateful to be able to concentrate on healing and not have to worry about going to work. Honestly, I'm nost sure I would have been able to but I know others have and some people need that "normalcy."
I would suggest sitz bathes or at least sitting in a tub of warm water for your husband right now. I had a lot of pain post surgery too and believe it or not, the sitz bath post BM's and when the pain got bad really helped. There is also a Lidocaine ointment that can be percribed to help with the localized pain.
Some of the best advise I was given in the beginnig was to stay focused on the here and now. The "what if's" will get you no where. (I know that's easier said than done.) I kept a notebook with every procedure or test that I had done and what I'd been told by the doctors and all my questions.
Well Wishes,
Tracey
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Thanks Tracey and LoriKatTraceyUSA said:Carolyn
An unfortunate welcome to you. As always, the others have given a good overview.
I was fortunate to be able to be off work from the time of tumor removal/biopsy was done unitl a few weeks post treatment. I was grateful to be able to concentrate on healing and not have to worry about going to work. Honestly, I'm nost sure I would have been able to but I know others have and some people need that "normalcy."
I would suggest sitz bathes or at least sitting in a tub of warm water for your husband right now. I had a lot of pain post surgery too and believe it or not, the sitz bath post BM's and when the pain got bad really helped. There is also a Lidocaine ointment that can be percribed to help with the localized pain.
Some of the best advise I was given in the beginnig was to stay focused on the here and now. The "what if's" will get you no where. (I know that's easier said than done.) I kept a notebook with every procedure or test that I had done and what I'd been told by the doctors and all my questions.
Well Wishes,
Tracey
Thanks for your replies-- Tracey and LoriKat-- You are right, it is all about the here and now (with or without cancer). Rather than looking too far ahead (which never fails to make me feel like i'm sliding into a giant hole in the floor), I'm going to use the time productively whenever possible. For one thing, I intend to use this pre-treatment time to get as many anti-cancer foods into his system as I can. I was always the "food Nazi" in the house, and now I have added motivation! And now, I don't even tell anyone that I am throwing out their sugary purchases from the fridge; I just do it...joyfully, actually. Garlic and tumeric sandwich, anyone?
More soon, Wishing all of you health,
Carolyn
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husband just diagnosed
Why not try to kill it before operation?Have a read f ph kills cancer.It maynot work?What if it does?
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Carolyn....
Hi, and I just want to welcome you and say that I am so very sorry for your need to be here. I will not repeat the great advice already given, but know that we are here as questions arise during the course of treatment. Nothing is off limits as you have seen, our bodily functions become serious topics of conversation, but I have been so thankful to have this place to feel safe in discussing such things....you will too.
I too was prescribed pain meds early on and continued them until about a month after treatment. Not everyone seems to need them, but if he does thats ok....this is not the time to say "I'll tough it out." I did take regular stool softeners to prevent constipation from the pain meds, that is important.
I remember my sister telling me as I began treatment to look ahead to something fun you or your family plan to be doing in 6 months and focus on that.....it will go quicker than you think and in a couple months he will be on the road to recovery!
I will keep your husband, yourself, and family in my thoughts and prayers for peace as you move forward.
katheryn
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Slight updateeihtak said:Carolyn....
Hi, and I just want to welcome you and say that I am so very sorry for your need to be here. I will not repeat the great advice already given, but know that we are here as questions arise during the course of treatment. Nothing is off limits as you have seen, our bodily functions become serious topics of conversation, but I have been so thankful to have this place to feel safe in discussing such things....you will too.
I too was prescribed pain meds early on and continued them until about a month after treatment. Not everyone seems to need them, but if he does thats ok....this is not the time to say "I'll tough it out." I did take regular stool softeners to prevent constipation from the pain meds, that is important.
I remember my sister telling me as I began treatment to look ahead to something fun you or your family plan to be doing in 6 months and focus on that.....it will go quicker than you think and in a couple months he will be on the road to recovery!
I will keep your husband, yourself, and family in my thoughts and prayers for peace as you move forward.
katheryn
Thanks to everyone for the continued support and interest in this...saga/ordeal. Thank you Katheryn for your words of comfort to me. I appreciate all of the support more than I could ever express. (And YES to the comment about non-traditional methods of healing while we wait for chemo. I am loading this poor guy up on more tumeric, vitamin E, and kale than he has ever seen in his life- we'll try anything).
So, my husband is scheduled for his first scan this upcoming Saturday, and they will have the results for us on Wednesday morning. He is really scared, because he says he feels the lymph nodes in his groin are sore, and he has a pain in his back....therefore, he is convinced that the cancer has spread everywhere. Oddly enough, they have determined that he is HPV NEGATIVE, which was a tremendous surprise to the oncologist. Given that puzzling fact, the MD scratched her head as to how someone with no real risk factors, chief among them being HPV, could have gotten this. Then again, leaving a wound unattended to, over time, is a risk factor, and I assume that is what happened here.
So we remain in the anxiety ridden holding pattern until Wednesday, and I am trying to kill time in any positive way that I can. I'm researching faith healers, going to the gym, working at the office with more focus and gusto than usual.... I even scheduled a facial for myself with my favorite facialist, who works her magic while playing relaxation music in the background (featuring songbirds and piano... I have never heard anything as beautiful in my life). Meanwhile, my husband has been very detached and quiet. Does not want to talk much at all. Once in a while he will come out of his shell and try to guess which of my old high school boyfriends I'll call first after his funeral... It's his awful attempt at humor, but I play along and we do have a few chuckles about it. I'm guessing that he'll feel much better once we have Wednesday behind us. Then we can say that we know everything knowable about this illness. There will be a comfort in that, whatever the scan shows.
Wishing you good things -- Martha did you mention something in a recent post about a kidney issue? I hope you are doing okay, and I hope that when my current crisis stage of this is over, I can give back as much comfort to you all as you have given to me.
With anxiety and appreciation,
Carolyn
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CarolynTheNewNormal said:Slight update
Thanks to everyone for the continued support and interest in this...saga/ordeal. Thank you Katheryn for your words of comfort to me. I appreciate all of the support more than I could ever express. (And YES to the comment about non-traditional methods of healing while we wait for chemo. I am loading this poor guy up on more tumeric, vitamin E, and kale than he has ever seen in his life- we'll try anything).
So, my husband is scheduled for his first scan this upcoming Saturday, and they will have the results for us on Wednesday morning. He is really scared, because he says he feels the lymph nodes in his groin are sore, and he has a pain in his back....therefore, he is convinced that the cancer has spread everywhere. Oddly enough, they have determined that he is HPV NEGATIVE, which was a tremendous surprise to the oncologist. Given that puzzling fact, the MD scratched her head as to how someone with no real risk factors, chief among them being HPV, could have gotten this. Then again, leaving a wound unattended to, over time, is a risk factor, and I assume that is what happened here.
So we remain in the anxiety ridden holding pattern until Wednesday, and I am trying to kill time in any positive way that I can. I'm researching faith healers, going to the gym, working at the office with more focus and gusto than usual.... I even scheduled a facial for myself with my favorite facialist, who works her magic while playing relaxation music in the background (featuring songbirds and piano... I have never heard anything as beautiful in my life). Meanwhile, my husband has been very detached and quiet. Does not want to talk much at all. Once in a while he will come out of his shell and try to guess which of my old high school boyfriends I'll call first after his funeral... It's his awful attempt at humor, but I play along and we do have a few chuckles about it. I'm guessing that he'll feel much better once we have Wednesday behind us. Then we can say that we know everything knowable about this illness. There will be a comfort in that, whatever the scan shows.
Wishing you good things -- Martha did you mention something in a recent post about a kidney issue? I hope you are doing okay, and I hope that when my current crisis stage of this is over, I can give back as much comfort to you all as you have given to me.
With anxiety and appreciation,
Carolyn
Thank you for the update, and also for your kind words of concern and support for my current issues.
My tumor was never tested for HPV and I wish it had been, however, chances are that it would have tested positive. Most cases of anal cancer are HPV-mediated, but there is a small percentage that are not.
I am glad you are keeping busy as a distraction from all of this. I can totally relate to how your husband is dealing with this, though. I was the same way--very much detached. What bothered me the most was having to wait almost 6 weeks from the time of diagnosis to the beginning of treatment--it was a time of anxiety and anxiousness. I do hope that your husband will feel better once you get all the answers to your questions and a date firmed up for the beginning of treatment.
Both of you are in my thoughts and prayers.
Martha
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HPVmp327 said:Carolyn
Thank you for the update, and also for your kind words of concern and support for my current issues.
My tumor was never tested for HPV and I wish it had been, however, chances are that it would have tested positive. Most cases of anal cancer are HPV-mediated, but there is a small percentage that are not.
I am glad you are keeping busy as a distraction from all of this. I can totally relate to how your husband is dealing with this, though. I was the same way--very much detached. What bothered me the most was having to wait almost 6 weeks from the time of diagnosis to the beginning of treatment--it was a time of anxiety and anxiousness. I do hope that your husband will feel better once you get all the answers to your questions and a date firmed up for the beginning of treatment.
Both of you are in my thoughts and prayers.
Martha
Carolyn
My tumor tested negative for HPV and every test I had always came back negative for HPV. I remained baffled as to how I got anal cancer. But I guess what matters is that it was treated successfully.
Liz
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about being a food police
about being a food police woman! I was surprised when I was told that I should eat everything..".now is the time to indulge your forbidden foods! " and the emphasis is on protein and fluids. It is critical to keep oneself well hydrated and to try to maintain your weight.
I didn't have nausea . but I had no appetite and zero interest in any kind of food; I even got tired of drinking water. I lost some weight (actually muscle from lying around and vegetating) and became dehydrated.
It should be helpful to have a consultation with the nutrition/dietician at MSKCC...to help you sort out foods, and maybe nutritional supplements like Ensure(the dark chocolate drink in ok.
What I mean to say is I wouldn't load up on lots of vitamins and supplements until I talked iwith the docs as some things may possibly interfere with the chemo.
I had proton radiation and i was told not to eat alot of beans, broccoli and other things that cause gas,because gas in the gi tract distorted the raiation beams! I never heard of that and maybe it just related to proton radiation
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TestingTheNewNormal said:Slight update
Thanks to everyone for the continued support and interest in this...saga/ordeal. Thank you Katheryn for your words of comfort to me. I appreciate all of the support more than I could ever express. (And YES to the comment about non-traditional methods of healing while we wait for chemo. I am loading this poor guy up on more tumeric, vitamin E, and kale than he has ever seen in his life- we'll try anything).
So, my husband is scheduled for his first scan this upcoming Saturday, and they will have the results for us on Wednesday morning. He is really scared, because he says he feels the lymph nodes in his groin are sore, and he has a pain in his back....therefore, he is convinced that the cancer has spread everywhere. Oddly enough, they have determined that he is HPV NEGATIVE, which was a tremendous surprise to the oncologist. Given that puzzling fact, the MD scratched her head as to how someone with no real risk factors, chief among them being HPV, could have gotten this. Then again, leaving a wound unattended to, over time, is a risk factor, and I assume that is what happened here.
So we remain in the anxiety ridden holding pattern until Wednesday, and I am trying to kill time in any positive way that I can. I'm researching faith healers, going to the gym, working at the office with more focus and gusto than usual.... I even scheduled a facial for myself with my favorite facialist, who works her magic while playing relaxation music in the background (featuring songbirds and piano... I have never heard anything as beautiful in my life). Meanwhile, my husband has been very detached and quiet. Does not want to talk much at all. Once in a while he will come out of his shell and try to guess which of my old high school boyfriends I'll call first after his funeral... It's his awful attempt at humor, but I play along and we do have a few chuckles about it. I'm guessing that he'll feel much better once we have Wednesday behind us. Then we can say that we know everything knowable about this illness. There will be a comfort in that, whatever the scan shows.
Wishing you good things -- Martha did you mention something in a recent post about a kidney issue? I hope you are doing okay, and I hope that when my current crisis stage of this is over, I can give back as much comfort to you all as you have given to me.
With anxiety and appreciation,
Carolyn
Just wondering if the doctors have tested your husbad for HIV. They did this test to me. As it ended up I am HIV negative. This was in 2008. I do not know if they tested for HPV. If they did the doctor did not share this with me. I do recall reading online some doctors at that time thought HPV might be a contributing factor but they did not have any conclusive evidence. Hang in there it will get better once all the testing is complete. The testing and waiting was definitely the worst part for me even though the testing and diagonis was only three weeks it seemed like an eternity. Once the treaments started my anxiety went way down. I looked at my treatments as a daily job.
Mike
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Note on Food & Supplementstanda said:about being a food police
about being a food police woman! I was surprised when I was told that I should eat everything..".now is the time to indulge your forbidden foods! " and the emphasis is on protein and fluids. It is critical to keep oneself well hydrated and to try to maintain your weight.
I didn't have nausea . but I had no appetite and zero interest in any kind of food; I even got tired of drinking water. I lost some weight (actually muscle from lying around and vegetating) and became dehydrated.
It should be helpful to have a consultation with the nutrition/dietician at MSKCC...to help you sort out foods, and maybe nutritional supplements like Ensure(the dark chocolate drink in ok.
What I mean to say is I wouldn't load up on lots of vitamins and supplements until I talked iwith the docs as some things may possibly interfere with the chemo.
I had proton radiation and i was told not to eat alot of beans, broccoli and other things that cause gas,because gas in the gi tract distorted the raiation beams! I never heard of that and maybe it just related to proton radiation
I have always tried to eat healthy (lots of vegi's) and took quite a few vitamins/supplements prior to beginning treatment.
I ask if it was ok to continue the vitamins during treatment. My radiation oncologist said all were fine but he didn't see why I needed to take them and my medical oncologist said it'd be best to not take them because some (esp. folic acid) could interfere with the chemo. So, I stopped all and only resumed a multi-vitamin and Caltrate post treatment.
As for diet, I was put on a low-residue diet by my radiation oncologist during treatment. It was in total contrast (low fiber, minimal fruits & vegi's) to how I was used to eating but I think it helped somewhat with the side effects of treatment and I also how well I'm able to tolerate my normal diet (fruits & vegi's especially) now. You need to eat as much as you can during treatment (easier said than done) because your body is working overtime to fight. And drink LOTS of water.
0
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