Back to the OR

sandysp

qv62 said:

sandysp

Yes "angry" is the word, went back to work yesterday and started out good but by the afternoon yes the area was "angry" when I got home I actually fell asleep on the couch, heading out to work again now and have a feeling I may have another date with the couch when I get home. She usually cauterizes when she takes a biopsy so I am hoping on past tradition that I'll be feeling better by the weekend, I am booked with my second job this Sa and there is no down time then. They wanted to see me this week for follow up and next week for the pain management doc but I had them put me in with both next week so I don't have to take 2 days off. When is your next appt in the city ?

I'm at MSK a lot for the next 12 weeks

I am in the city all day tomorrow, at MSK and at Mt. Sinai (for the neuro-otologist).

I have to be in the city twice a week for twelve weeks due to a flare up of the lymphedema since I stopped being as careful taking care of myself while I got so involved with my hearing and vertigo issues. I have been doing hot yoga and convinced myself that I didn't need to do the 45 minute MLD treatment every day. I was wrong:-(

I went to a lymphedema forum though, and it was a real eye opener. I am lucky to be stage 1 and need to be very vigilent. I think people need to be much more aware of pelvic lymphedema, especially if they had cancer in their lymph nodes. It is not good to let symptoms go untreated.

Anyway, I would love to see you again. Surely if you are coming into the city for appointments we will be able to hook up.

By the way, I still think you need to rethink how much you are doing. Your body needs real rest.

Fondly,

Sandy

qv62

sandysp said:

I'm at MSK a lot for the next 12 weeks

I am in the city all day tomorrow, at MSK and at Mt. Sinai (for the neuro-otologist).

I have to be in the city twice a week for twelve weeks due to a flare up of the lymphedema since I stopped being as careful taking care of myself while I got so involved with my hearing and vertigo issues. I have been doing hot yoga and convinced myself that I didn't need to do the 45 minute MLD treatment every day. I was wrong:-(

I went to a lymphedema forum though, and it was a real eye opener. I am lucky to be stage 1 and need to be very vigilent. I think people need to be much more aware of pelvic lymphedema, especially if they had cancer in their lymph nodes. It is not good to let symptoms go untreated.

Anyway, I would love to see you again. Surely if you are coming into the city for appointments we will be able to hook up.

By the way, I still think you need to rethink how much you are doing. Your body needs real rest.

Fondly,

Sandy

sandysp

Oh Sandy, I'm so sorry to hear you are having this trouble, I have been meaning to send you a message and see how you are doing.  We should all take a lesson from your book and take better care of ourselves, so much easier said than done ! I have 2 appts this Wed, pain management over at the main hospital, and follow up from the biopsy over on 53rd, are you in the city this Wed ? If so let's make a plan.

qv62

biopsy results

I met with the doc on Wednesday, based on the exam "ouch" I am healing well, however the biopsy results are inconclusive, they show fragments of carcinoma but not sure of invasion, this has become so frustrating to be in this gray area. This is like a replay of what I went through in June, the first biopsy in June came back inconclusive and I had to have a second one which showed invasion suspected ? As for now doc doesn't know what to do with me, she doesn't really want to bring me back to the OR again this time since we keep compromising the sphincter, she has rquested extra cuts and looks at the pathology but no more info than what she originally got, she has spoken to the chief of staff of colocrectal oncology and of course the radiologist, still now answers, needless to say I went home Wed with not only a sore butt but a whopping headache, the bottom line now is that my case will once again go before the tumor board on Monday and I will have a phone conference with the doc on Tuesday. I am thankful my first appt with pain management went well and I can get my discomfort under contrlol. now just waiting....the biopsy was done on the 24th so needless to say my head has been wrapped around this for weeks

TraceyUSA

qv62 said:

biopsy results

I met with the doc on Wednesday, based on the exam "ouch" I am healing well, however the biopsy results are inconclusive, they show fragments of carcinoma but not sure of invasion, this has become so frustrating to be in this gray area. This is like a replay of what I went through in June, the first biopsy in June came back inconclusive and I had to have a second one which showed invasion suspected ? As for now doc doesn't know what to do with me, she doesn't really want to bring me back to the OR again this time since we keep compromising the sphincter, she has rquested extra cuts and looks at the pathology but no more info than what she originally got, she has spoken to the chief of staff of colocrectal oncology and of course the radiologist, still now answers, needless to say I went home Wed with not only a sore butt but a whopping headache, the bottom line now is that my case will once again go before the tumor board on Monday and I will have a phone conference with the doc on Tuesday. I am thankful my first appt with pain management went well and I can get my discomfort under contrlol. now just waiting....the biopsy was done on the 24th so needless to say my head has been wrapped around this for weeks

qv62

I can only imagine the worry & frustration you are feeling.  The uncertainity would definitely bother me.  Try to stay positive.  I pray for the best for you.

mp327

qv62 said:

biopsy results

I met with the doc on Wednesday, based on the exam "ouch" I am healing well, however the biopsy results are inconclusive, they show fragments of carcinoma but not sure of invasion, this has become so frustrating to be in this gray area. This is like a replay of what I went through in June, the first biopsy in June came back inconclusive and I had to have a second one which showed invasion suspected ? As for now doc doesn't know what to do with me, she doesn't really want to bring me back to the OR again this time since we keep compromising the sphincter, she has rquested extra cuts and looks at the pathology but no more info than what she originally got, she has spoken to the chief of staff of colocrectal oncology and of course the radiologist, still now answers, needless to say I went home Wed with not only a sore butt but a whopping headache, the bottom line now is that my case will once again go before the tumor board on Monday and I will have a phone conference with the doc on Tuesday. I am thankful my first appt with pain management went well and I can get my discomfort under contrlol. now just waiting....the biopsy was done on the 24th so needless to say my head has been wrapped around this for weeks

qv62

I just have to say that this really sucks--being in limbo with no answers.  I am so sorry that this saga continues for you.  I know San Francisco is a long, long way from where you are, but the Dysplasia Clinic at Univ. of California-San Francisco might be a very good resource for your doctors.  Dr. Berry located there is well-known when it comes to dysplasia.  Perhaps you could ask your doctors to have a phone consult with him.  Just a suggestion.  I have a friend from another website who goes to Dr. Berry regularly for treatment of anal dysplasia and he has been very pleased with his treatment and is doing quite well.  I'm sure you are feeling like you are between a rock and a hard place right now.  I wish you didn't have to be there!  Please keep us posted and I hope you heal quickly!

Phoebesnow

mp327 said:

qv62

I just have to say that this really sucks--being in limbo with no answers.  I am so sorry that this saga continues for you.  I know San Francisco is a long, long way from where you are, but the Dysplasia Clinic at Univ. of California-San Francisco might be a very good resource for your doctors.  Dr. Berry located there is well-known when it comes to dysplasia.  Perhaps you could ask your doctors to have a phone consult with him.  Just a suggestion.  I have a friend from another website who goes to Dr. Berry regularly for treatment of anal dysplasia and he has been very pleased with his treatment and is doing quite well.  I'm sure you are feeling like you are between a rock and a hard place right now.  I wish you didn't have to be there!  Please keep us posted and I hope you heal quickly!

Qv62

I would follow Martha's suggestion even if I had to go there.  

If you don't have the funds maybe we could raise them here with contributions from the other boards.

I really feel for you going thru this again and again.

 

From my lips to Gods ears, pleaseeee heal this woman!

qv62

mp327, TraceyUSA, Marynb, Phoebesnow

Thank you all, so wonderful of you all to be so supportive, caring and helpful.I truly appreciate you res[onses  and efforts. Yes I am frustrated and truly feel I am in Limbo. My thoughts over the last few days have been to contact MD Anderson but since you have suggested Dr. Berry maybe I will concentrate my efforts there. I have a phone conference with my Sloan doc on Tuesday to discuss the tumor board reccomendations, I will post back to all of you once I hear. In the meantime I will do my research on Dr, Berry and see what options I have. You are a wonderful support group, and I would feel so alone in this if it weren't for all of you. Don't get me wrong, I have so many wonderful friends and a loving husband and kids but having not experienced what all of you have they don't seem to understand all that's going on in my head. It is comforting to come here and be understood.

Marynb

Phoebesnow said:

Qv62

I would follow Martha's suggestion even if I had to go there.  

If you don't have the funds maybe we could raise them here with contributions from the other boards.

I really feel for you going thru this again and again.

 

From my lips to Gods ears, pleaseeee heal this woman!

Qv62
I am sending you prayers and a big hug. I am sorry you are still going through this. Martha's suggestion may work for you. I wonder why they don't just go ahead with chemo and radiation? Has that been discussed? I know it is no picnic, but it cures many people. I wouldn't even know what to ask the doctor at this point. I just would want to know what the odds are that this would progress to cancer after going through all these treatments.

I hope you are taking good care of yourself and you get relief soon. I am praying that you are healed soon!

qv62

off the radar

hello friends,

 

I hope you all had a very happy Thanksgiving, I have been off the boards for a few weeks, life has just been crazy and busy, but I have been thinking of all of you over this Thanksgiving holiday and wanted to update you on my situation as well as send my thanks for all of you being there when I need support. I had my phone conference with the doctor, she called me when she came out of the tumor board meeting however I am still in Limbo as the pathology reports did not change, pathology showed fragments of carcinoma and invasion was questionable, the board agreed to take the wait n see approach again, my doctor had me meet with the radiologist again and everyone is in agreement as of now no treatment and not to do another biopsy  until symptomatic. I met with the radioolgist now for the third time and she has once again told me my situation is unique and complex due to the results on my pathology reports. She said the only way to get a real understanding would be to take out the entire sphinchter  which is not an option at this point. With that said, I have taken your advice to contact Dr, Berry, I finally spoke to him this week, he seems to be not only a very nice person but quite knowledgeable in his field, he knows my doctor and has assured me I am in good hands, I told him I have full faith in her and the care I am getting but have lost fait in the pathology people, he told me he would hate to have me come 3,000 miles to see him when I could be treated and tested here, he wants me to ask my doctor if she has done or will do a high resolution anoscopy with magnification. I will see her in 2 weeks to discuss, I told him I know she has done several anoscopies on me but I am not sure about high resolution, he suggested for me to see Dr, Goldstone in NY if she does not do the high resolution. So needless to say I started to research him. Has anyone had any dealings with Dr, Goldstone? all of my research came up dissapointing, I read several negative reviews about him, his practice, his staff etc... I was quite dissapointed. So for now I will get through the next 2 weeks and wait to see my surgeon for my checkup and discuss the high resolution with her. As always any advice is appreciated.

mp327

qv62 said:

off the radar

hello friends,

 

I hope you all had a very happy Thanksgiving, I have been off the boards for a few weeks, life has just been crazy and busy, but I have been thinking of all of you over this Thanksgiving holiday and wanted to update you on my situation as well as send my thanks for all of you being there when I need support. I had my phone conference with the doctor, she called me when she came out of the tumor board meeting however I am still in Limbo as the pathology reports did not change, pathology showed fragments of carcinoma and invasion was questionable, the board agreed to take the wait n see approach again, my doctor had me meet with the radiologist again and everyone is in agreement as of now no treatment and not to do another biopsy  until symptomatic. I met with the radioolgist now for the third time and she has once again told me my situation is unique and complex due to the results on my pathology reports. She said the only way to get a real understanding would be to take out the entire sphinchter  which is not an option at this point. With that said, I have taken your advice to contact Dr, Berry, I finally spoke to him this week, he seems to be not only a very nice person but quite knowledgeable in his field, he knows my doctor and has assured me I am in good hands, I told him I have full faith in her and the care I am getting but have lost fait in the pathology people, he told me he would hate to have me come 3,000 miles to see him when I could be treated and tested here, he wants me to ask my doctor if she has done or will do a high resolution anoscopy with magnification. I will see her in 2 weeks to discuss, I told him I know she has done several anoscopies on me but I am not sure about high resolution, he suggested for me to see Dr, Goldstone in NY if she does not do the high resolution. So needless to say I started to research him. Has anyone had any dealings with Dr, Goldstone? all of my research came up dissapointing, I read several negative reviews about him, his practice, his staff etc... I was quite dissapointed. So for now I will get through the next 2 weeks and wait to see my surgeon for my checkup and discuss the high resolution with her. As always any advice is appreciated.

qv62

I"m sorry you are still in limbo, but so happy to hear that you spoke with Dr. Berry and found him to be very knowledgeable and reassuring that your physician is following you appropriately.  As for Dr. Goldstone, I am not familiar with him on a personal basis, but have been in contact (in the past) with a couple of people who have seen him.  I cannot speak on his bedside manner, but I do believe he is very knowledgeable on anal cancer, based upon their comments.  There are not that many doctors who do HRA, so he may be your only and/or best choice, unless you are willing to travel.  I have researched lots of doctors on the internet and have found that comments are often mixed and it seems that negative comments are more numerous just because when people don't like somone or something, they tend to voice their opinion more than those who were pleased.  I, myself, have been guilty of that.  I don't know what websites you checked, but www.Vitals.com is usually where I begin researching a doctor.  I also believe that if Dr. Berry did not have good faith in Dr. Goldstone, he would not have recommended him.  But ultimately the choice is yours. 

Please let us know what unfolds as you continue seeking answers and treatment.  As always, I wish you the very best! 

Marynb

qv62 said:

off the radar

hello friends,

 

I hope you all had a very happy Thanksgiving, I have been off the boards for a few weeks, life has just been crazy and busy, but I have been thinking of all of you over this Thanksgiving holiday and wanted to update you on my situation as well as send my thanks for all of you being there when I need support. I had my phone conference with the doctor, she called me when she came out of the tumor board meeting however I am still in Limbo as the pathology reports did not change, pathology showed fragments of carcinoma and invasion was questionable, the board agreed to take the wait n see approach again, my doctor had me meet with the radiologist again and everyone is in agreement as of now no treatment and not to do another biopsy  until symptomatic. I met with the radioolgist now for the third time and she has once again told me my situation is unique and complex due to the results on my pathology reports. She said the only way to get a real understanding would be to take out the entire sphinchter  which is not an option at this point. With that said, I have taken your advice to contact Dr, Berry, I finally spoke to him this week, he seems to be not only a very nice person but quite knowledgeable in his field, he knows my doctor and has assured me I am in good hands, I told him I have full faith in her and the care I am getting but have lost fait in the pathology people, he told me he would hate to have me come 3,000 miles to see him when I could be treated and tested here, he wants me to ask my doctor if she has done or will do a high resolution anoscopy with magnification. I will see her in 2 weeks to discuss, I told him I know she has done several anoscopies on me but I am not sure about high resolution, he suggested for me to see Dr, Goldstone in NY if she does not do the high resolution. So needless to say I started to research him. Has anyone had any dealings with Dr, Goldstone? all of my research came up dissapointing, I read several negative reviews about him, his practice, his staff etc... I was quite dissapointed. So for now I will get through the next 2 weeks and wait to see my surgeon for my checkup and discuss the high resolution with her. As always any advice is appreciated.

Qv62
I am sorry to hear that you are still struggling with this. It sounds really extreme to have to remove the sphincter as an option. I don't know anything about the doctors you refer to. I am just wondering why the standard protocol of chemo and radiation wouldn't work as an option?

Stay strong. You have been, and will remain, in my thoughts and prayers. Please take good care of yourself!

qv62

mp327 said:

qv62

I"m sorry you are still in limbo, but so happy to hear that you spoke with Dr. Berry and found him to be very knowledgeable and reassuring that your physician is following you appropriately.  As for Dr. Goldstone, I am not familiar with him on a personal basis, but have been in contact (in the past) with a couple of people who have seen him.  I cannot speak on his bedside manner, but I do believe he is very knowledgeable on anal cancer, based upon their comments.  There are not that many doctors who do HRA, so he may be your only and/or best choice, unless you are willing to travel.  I have researched lots of doctors on the internet and have found that comments are often mixed and it seems that negative comments are more numerous just because when people don't like somone or something, they tend to voice their opinion more than those who were pleased.  I, myself, have been guilty of that.  I don't know what websites you checked, but www.Vitals.com is usually where I begin researching a doctor.  I also believe that if Dr. Berry did not have good faith in Dr. Goldstone, he would not have recommended him.  But ultimately the choice is yours. 

Please let us know what unfolds as you continue seeking answers and treatment.  As always, I wish you the very best! 

mp327

Thanks Martha, yes I have checked vitals as well as another site, I agree that most people tend to post negative feedback more often than poitive, happens on Tripadvisor as well, I just wish I could find a few good things about Dr Goldstone, I haven't seen anything negative about Dr. Berry and felt very comfortable with him on the phone as well as his staff. The reviews on Dr Goldstone were so bad I don't know if I could let him examine me, espescially with a scope. People used words like "butcher" and quite honestly that scares me away., I will see what happens with my next visit but in the meantime I will continue the search, if you find any positive feed back by all means please do share it with me, thanks so much. Do you know why so few do the HRA ?

qv62

Marynb said:

Qv62
I am sorry to hear that you are still struggling with this. It sounds really extreme to have to remove the sphincter as an option. I don't know anything about the doctors you refer to. I am just wondering why the standard protocol of chemo and radiation wouldn't work as an option?

Stay strong. You have been, and will remain, in my thoughts and prayers. Please take good care of yourself!

Marynb

Mary, as always thanks for the thoughts and prayers, as for taking out the sphinchter, they have no intentions of doing that it was just the doctors way of explaining to me that this would be the only way to really see what is underlying, it is my understanding they aren't going ahead with treatment at this time since the pathology has said "invasion suspected"  "microinvasion" "invasion questionable" or "borderline invasion" they seem to not want to blast it until it is in full swing , for several reasons, fear it comes back and having already radiated as well as the long term side effects when invasion is not clearly comfirmed, I am praying for patience to understand it all as well

mp327

qv62 said:

Marynb

Mary, as always thanks for the thoughts and prayers, as for taking out the sphinchter, they have no intentions of doing that it was just the doctors way of explaining to me that this would be the only way to really see what is underlying, it is my understanding they aren't going ahead with treatment at this time since the pathology has said "invasion suspected"  "microinvasion" "invasion questionable" or "borderline invasion" they seem to not want to blast it until it is in full swing , for several reasons, fear it comes back and having already radiated as well as the long term side effects when invasion is not clearly comfirmed, I am praying for patience to understand it all as well

qv62

I believe that what you have stated is true, that chemo/rad is not recommended in cases of anal dysplasia or carcinoma-in-situ, for the very reasons you have stated.  I believe most doctors take a watch and wait approach in these cases, which is most unfortunate for the patient, as you well know.  It truly sucks to be in limbo, I'm sure.

I will continue searching out info on Dr. Goldstone and let you know if I find anything that will shed a positive light on him.

qv62

mp327 said:

qv62

I believe that what you have stated is true, that chemo/rad is not recommended in cases of anal dysplasia or carcinoma-in-situ, for the very reasons you have stated.  I believe most doctors take a watch and wait approach in these cases, which is most unfortunate for the patient, as you well know.  It truly sucks to be in limbo, I'm sure.

I will continue searching out info on Dr. Goldstone and let you know if I find anything that will shed a positive light on him.

mp327

Thanks Martha, I would be interestedd in any info you find on Dr Goldstone, I am still researching as well but not too much good luck on that. As for limbo yest it does "suck" especially when the last couple of biopsies are not saying in-situ, its as if the pathology is changing ever so slowly, next appt is on the 18th so I am trying to drum up some questions to ask, one of course will be in reference to the HRA, if anyone can think of questions I should ask please feel free to post.

mp327

qv62 said:

mp327

Thanks Martha, I would be interestedd in any info you find on Dr Goldstone, I am still researching as well but not too much good luck on that. As for limbo yest it does "suck" especially when the last couple of biopsies are not saying in-situ, its as if the pathology is changing ever so slowly, next appt is on the 18th so I am trying to drum up some questions to ask, one of course will be in reference to the HRA, if anyone can think of questions I should ask please feel free to post.

qv62

I have been looking at various websites that let people rate doctors.  There do seem to be a lot of negative comments about this doctor.  However, I noted that a lot of those comments were not directed at him, rather at his office staff and their rudeness.  Also, I noted that most of the comments were not recent.  I wish I had the answer for you as to whether or not to see him.  If I find anything else, I'll let you know.

qv62

mp327 said:

qv62

I have been looking at various websites that let people rate doctors.  There do seem to be a lot of negative comments about this doctor.  However, I noted that a lot of those comments were not directed at him, rather at his office staff and their rudeness.  Also, I noted that most of the comments were not recent.  I wish I had the answer for you as to whether or not to see him.  If I find anything else, I'll let you know.

mp327

Yes, I agree much of it is direced towards his staff however there are references to the doctor being less than delicate, a bull in a china shop, a butcher and several complications after surgery, the reviews also state he is not a board certified colorectal surgeon, my research is not off to a good start. I will continue though, if I hadn't spoken to Dr. Berry I wouldn't even be looking any further, but since I have nothing to loose in my research I will continue....

mp327

qv62 said:

mp327

Yes, I agree much of it is direced towards his staff however there are references to the doctor being less than delicate, a bull in a china shop, a butcher and several complications after surgery, the reviews also state he is not a board certified colorectal surgeon, my research is not off to a good start. I will continue though, if I hadn't spoken to Dr. Berry I wouldn't even be looking any further, but since I have nothing to loose in my research I will continue....

qv62

Since you are located in the NYC area, perhaps there are other doctors there who also do HRA.  Please check out this link which lists doctors and other practitioners who do HRA.

http://id.medicine.ucsf.edu/analcancerinfo/all_providers.html

I notice that on this list are a few providers in the state of NY and northeast corridor.  Something to think about. 

Curiously, I thought I had read awhile back that HRA was done in the Atlanta, Georgia area (where I live) by a NP at Grady Hospital.  However, I don't see that listed.  This type of exam obviously hasn't caught fire yet with most doctors, since there seems to be a limited number of them in this country that do this exam. 

I say this mostly kiddingly, but since Dr. Berry has been praised by quite a few people I've been in contact with, perhaps a nice vacation would be to San Francisco.  His expertise on treating anal dysplasia and carcinoma-in-situ seems to be top-notch.   Please keep us posted on what your next step will be.

qv62

mp327 said:

qv62

Since you are located in the NYC area, perhaps there are other doctors there who also do HRA.  Please check out this link which lists doctors and other practitioners who do HRA.

http://id.medicine.ucsf.edu/analcancerinfo/all_providers.html

I notice that on this list are a few providers in the state of NY and northeast corridor.  Something to think about. 

Curiously, I thought I had read awhile back that HRA was done in the Atlanta, Georgia area (where I live) by a NP at Grady Hospital.  However, I don't see that listed.  This type of exam obviously hasn't caught fire yet with most doctors, since there seems to be a limited number of them in this country that do this exam. 

I say this mostly kiddingly, but since Dr. Berry has been praised by quite a few people I've been in contact with, perhaps a nice vacation would be to San Francisco.  His expertise on treating anal dysplasia and carcinoma-in-situ seems to be top-notch.   Please keep us posted on what your next step will be.

mp327

Thanks Martha, this is a great link, I haven't come across this list, very intersting and appreciated. As for the kidding of a San Francisco trip, all kidding aside I have not planned next years vacation and may very well consider it to be San Francisco to see Dr. Berry, I felt very comfortable and confident in just speaking to him on the phone. I went to San Fran nearly 30 years ago for only a few days and would not mind going back, I'll see what happens on the 18th but have not ruled it out. I am pretty sure at this point that I have ruled out Dr. G, it still baffles me not finding anything good written on him after he comes highly recommended from Dr, Berry. I saw doctors listed in Barcelona and London, two places I would love to go but not in the budget so I won't research those lol

 

mp327

qv62 said:

mp327

Thanks Martha, this is a great link, I haven't come across this list, very intersting and appreciated. As for the kidding of a San Francisco trip, all kidding aside I have not planned next years vacation and may very well consider it to be San Francisco to see Dr. Berry, I felt very comfortable and confident in just speaking to him on the phone. I went to San Fran nearly 30 years ago for only a few days and would not mind going back, I'll see what happens on the 18th but have not ruled it out. I am pretty sure at this point that I have ruled out Dr. G, it still baffles me not finding anything good written on him after he comes highly recommended from Dr, Berry. I saw doctors listed in Barcelona and London, two places I would love to go but not in the budget so I won't research those lol

 

qv62

I hope you will consider that trip to S.F.  If your comfort level is that high with Dr. Berry, then I say go with your gut!  I was in S.F. for a couple of days last year and my gut was very happy (meaning there's lots of good food there!).  Take care.