multiple recurrence after surgeries ?

Marynb

qv62 said:

good day
Thanks for the prayers and good wishes, today was the easy part, pre-op was routine and all went well, I took advantage of being in Manhattan and went to mass at St Patricks Cathedral, always seem to find inner peace there and now it is certainly needed, also had a fun twist in my day meeting and taking a picture with Emmit Smith on my walk from the subway up to the hospital Guess now all I can do is wait for my phone call to find out what time to arrive on Thurs for the OR

Qv
I am glad you found some peace today and also had a little fun. What a beautiful day to walk around the city today! I just love St. Patrick's. I hope this week goes by pretty quickly for you. You will be in my prayers. Take good care of yourself this week. Soon, all will be well.

Sleep well.

Mary

qv62

Marynb said:

Qv
I am glad you found some peace today and also had a little fun. What a beautiful day to walk around the city today! I just love St. Patrick's. I hope this week goes by pretty quickly for you. You will be in my prayers. Take good care of yourself this week. Soon, all will be well.

Sleep well.

Mary

Thanks Mary
Thank you for the prayers, I always welcome them, I am scheduled for 8:30 tomorrow morning, and will be pulling in all the positive energy I can, I get so rattled on my way into the OR, I have a problem with anesthesia which makes me even more rattled. I feel I am in good hands with my surgeon so I also have peace with that, the board has been so comforting for me, people at home just don't get it, everyone still expects everything of you when you are falling to pieces, kids still fighting with each other etc... the list goes on, I feel here everyone has understanding and compassion. I will keep you posted.

7243

qv62 said:

Thanks Mary
Thank you for the prayers, I always welcome them, I am scheduled for 8:30 tomorrow morning, and will be pulling in all the positive energy I can, I get so rattled on my way into the OR, I have a problem with anesthesia which makes me even more rattled. I feel I am in good hands with my surgeon so I also have peace with that, the board has been so comforting for me, people at home just don't get it, everyone still expects everything of you when you are falling to pieces, kids still fighting with each other etc... the list goes on, I feel here everyone has understanding and compassion. I will keep you posted.

Praying for you
I pray all went well today! Love to you! Xo

qv62

7243 said:

Praying for you
I pray all went well today! Love to you! Xo

Thanks 7243
I truly appreciate the prayers, as rattled as I have been, I felt the power of prayer in the OR and found it self calming, I tend to get myself all worked up but I knew my prayer warriors were in full swing, I could feel it inside. My surgery was at 8:30, I went into recovery around 10 and was released at 6:30, came home with percocet but I am still in quite a bit of pain, looking at the clock for the next dose about 2 hrs before schedule. My surgeon came to speak to me afterwards but I was still pretty groggy, all I retained is to change my appt from next week to the week after, she also spoke to my husband, he told me she said she would not be recommending radiation as to the permanent damage and incontinence, however he believes she will be looking to do another surgery after the holidays. I called the office today but haven't heard back from her I guess now I won't hear anything until Monday, she also said it would take a while for the pathology to come back, I only wish I was more alert when she came to see me. I will just be taking it easy this weekend, not sure about work on Monday yet, the way I feel right now I can't imagine going to work but we all know a few days make a big difference so I will see what Mon morning brings. All your support has been a blessing

Marynb

qv62 said:

Thanks 7243
I truly appreciate the prayers, as rattled as I have been, I felt the power of prayer in the OR and found it self calming, I tend to get myself all worked up but I knew my prayer warriors were in full swing, I could feel it inside. My surgery was at 8:30, I went into recovery around 10 and was released at 6:30, came home with percocet but I am still in quite a bit of pain, looking at the clock for the next dose about 2 hrs before schedule. My surgeon came to speak to me afterwards but I was still pretty groggy, all I retained is to change my appt from next week to the week after, she also spoke to my husband, he told me she said she would not be recommending radiation as to the permanent damage and incontinence, however he believes she will be looking to do another surgery after the holidays. I called the office today but haven't heard back from her I guess now I won't hear anything until Monday, she also said it would take a while for the pathology to come back, I only wish I was more alert when she came to see me. I will just be taking it easy this weekend, not sure about work on Monday yet, the way I feel right now I can't imagine going to work but we all know a few days make a big difference so I will see what Mon morning brings. All your support has been a blessing

Qv
I am glad this day is over for you. Take it easy this weekend. I hope you don't mind me bringing this up, but have you thought about getting a second opinion? I think, with all your recurrences, it might be wise. I really would not mess around after so many recurrences.

Rest well and take care.

Hugs.

Mary

Marynb

qv62 said:

Thanks 7243
I truly appreciate the prayers, as rattled as I have been, I felt the power of prayer in the OR and found it self calming, I tend to get myself all worked up but I knew my prayer warriors were in full swing, I could feel it inside. My surgery was at 8:30, I went into recovery around 10 and was released at 6:30, came home with percocet but I am still in quite a bit of pain, looking at the clock for the next dose about 2 hrs before schedule. My surgeon came to speak to me afterwards but I was still pretty groggy, all I retained is to change my appt from next week to the week after, she also spoke to my husband, he told me she said she would not be recommending radiation as to the permanent damage and incontinence, however he believes she will be looking to do another surgery after the holidays. I called the office today but haven't heard back from her I guess now I won't hear anything until Monday, she also said it would take a while for the pathology to come back, I only wish I was more alert when she came to see me. I will just be taking it easy this weekend, not sure about work on Monday yet, the way I feel right now I can't imagine going to work but we all know a few days make a big difference so I will see what Mon morning brings. All your support has been a blessing

Qv.....another thought

Hi again. I am just thinking about your situation. You say that there have been mutliple recurrences and that the reason that they did not follow the accepted protocol of chemo and radiation is because your original diagnosis was anal carinoma in situ. So, if it were in situ, and only surgery was indicated because it was contained to that one tumor, why would it keep spreading? It seems that there must have been rogue cells spreading, doesn't it? With so many recurrences, wouldn't a systemic apporach be indicated? It seems a little troubling that the doctors are telling you that radiaton would be too damaging, yet the cancer keeps spreading. Just my two cents. There may well be a valid reason that the doctors cannot give you chemo and radiation and you just have to keep cutting the tumors out, but I would surely get a second and maybe third opinion.

qv62

Marynb said:

Qv.....another thought

Hi again. I am just thinking about your situation. You say that there have been mutliple recurrences and that the reason that they did not follow the accepted protocol of chemo and radiation is because your original diagnosis was anal carinoma in situ. So, if it were in situ, and only surgery was indicated because it was contained to that one tumor, why would it keep spreading? It seems that there must have been rogue cells spreading, doesn't it? With so many recurrences, wouldn't a systemic apporach be indicated? It seems a little troubling that the doctors are telling you that radiaton would be too damaging, yet the cancer keeps spreading. Just my two cents. There may well be a valid reason that the doctors cannot give you chemo and radiation and you just have to keep cutting the tumors out, but I would surely get a second and maybe third opinion.

good thoughts
Yes Mary, these are all good thoughts and I will discuss them when I meet for my follow up, I feel I am on my second opinion since I was treated on LI during 2009 & 2010 and now in Manhattan 2011 & 2012, my current doctor is a colorectal surgical oncologist where as before I was seeing 2 doctors, a colorectal surgeon and an oncologist, they have all explained to me that this type of cancer spider webs , when I was treated on LI and met with the radioligist, I was told there may be damage that would be irreversible and now getting the same feedback here, I wish I had a crystal ball, I really do trust my doctor and researched her before making the move, she does specialize in anal cancer with sphincter preservation, and now that I have gone through months of PT and gotten back so much of the control I lost I fear the loss again and feel she will try and not damage that, the approach she has taken was much more agressive than I had on LI, the wide excision, plastic surgery etc. I just felt that after that I would not be dealing with this now so it is quite overwhelming

qv62

status update
the surgical biopsy results came back as another carcinoma in situ, I went in last week for a follow up and the doctor is recommending another excision, she does not want to radiate unless she goes in and finds it is invasive. The knife like pain she said is yet anothe fisture, I have pre op Jan 2nd and surgery Jan 11th to excise the growth , I will be in the hospital for a few days and she said 4-6 weeks of a painful recovery, having been down this road before I keep hopping on and off the pity train, I am thankful I won't be missing Christmas and thankful to all of you on the board

Marynb

qv62 said:

status update
the surgical biopsy results came back as another carcinoma in situ, I went in last week for a follow up and the doctor is recommending another excision, she does not want to radiate unless she goes in and finds it is invasive. The knife like pain she said is yet anothe fisture, I have pre op Jan 2nd and surgery Jan 11th to excise the growth , I will be in the hospital for a few days and she said 4-6 weeks of a painful recovery, having been down this road before I keep hopping on and off the pity train, I am thankful I won't be missing Christmas and thankful to all of you on the board

Qv
I will be praying for you. You sure have been through so much with this! Did they say why you keep having recurrences and why they don't follow the protocol? How likely is another surgery going to rid you of cancer for good?

I am glad that you will be able to enjoy Christmas with your loved ones! Enjoy this time. You will heal up in the winter and by Spring, you will be able to get back outside in the beautiful weather. You will get through this again. I am just sorry that you have to keeo going through this.

Hang in there. Soon, all will be well.

qv62

Marynb said:

Qv
I will be praying for you. You sure have been through so much with this! Did they say why you keep having recurrences and why they don't follow the protocol? How likely is another surgery going to rid you of cancer for good?

I am glad that you will be able to enjoy Christmas with your loved ones! Enjoy this time. You will heal up in the winter and by Spring, you will be able to get back outside in the beautiful weather. You will get through this again. I am just sorry that you have to keeo going through this.

Hang in there. Soon, all will be well.

Marynb
Thank you for the prayers, as for the recurrences I did ask, I was told that that there really isn't anything I can do to avoid them, I was told that the radiation at this point could do permanent damage to my sphincter and they feel they have a better chance of sphincter preservation with the surgery, my biopsy in the OR showed the growth was pre-invasive so they do not wnat to radiate unless they find it invasive when they do the surgery. Last year at this time I spent a week in the hospital , so I am thankful I am not missing Christmas and I will only be in the hospital a few days. I hope you have a blessed holiday with your family. I am hosting Christmas day so needless to say I am going to have a focus these next few days.

OMG 1012

qv62 said:

status update
the surgical biopsy results came back as another carcinoma in situ, I went in last week for a follow up and the doctor is recommending another excision, she does not want to radiate unless she goes in and finds it is invasive. The knife like pain she said is yet anothe fisture, I have pre op Jan 2nd and surgery Jan 11th to excise the growth , I will be in the hospital for a few days and she said 4-6 weeks of a painful recovery, having been down this road before I keep hopping on and off the pity train, I am thankful I won't be missing Christmas and thankful to all of you on the board

Hi
I am so sorry you have to go through this--I remember my recovery back in Oct when they removed my "hemmy" and found it
to be in situ
as I said in my other reply to you, I opted for the treatment.
which at the moment SUX!
I wish you well and I pray that this next surgery you have is the one to get it all
Happy Holidays

Marynb

Qv

Qv, have fun hosting Christmas! There isn't much better than that! Hope we have just a little dusitng of snow to make it perfect!

Did they say why they did not give you chemo to get any rogue cells that are causing all these recurrences? Chemo is certainly not fun, but honestly it has given me some peace of mind. I had a subsequent cancer, for which there is no effective chemo or radiation. They did surgery to remove the original tumor, but it had spread to the lymph glands. If there was an effective protocol, I would insist on it!
Prayers going out for you! Have a wonderful day with your loved ones!

qv62

Marynb said:

Qv

Qv, have fun hosting Christmas! There isn't much better than that! Hope we have just a little dusitng of snow to make it perfect!

Did they say why they did not give you chemo to get any rogue cells that are causing all these recurrences? Chemo is certainly not fun, but honestly it has given me some peace of mind. I had a subsequent cancer, for which there is no effective chemo or radiation. They did surgery to remove the original tumor, but it had spread to the lymph glands. If there was an effective protocol, I would insist on it!
Prayers going out for you! Have a wonderful day with your loved ones!

Thanks to all for the prayers and good wishes, I had surgery on Fri and I am now home recovering. All went well and the doctor feels confident that everything removed was pre-cancer, just waiting on the official pathology. I have my post op follow up next wed and I am just taking it easy until then. I have a wonderful support system of friends and I am able to sleep well at home as opposed to the hospital. My only dilema now is that my husband is very moody, he is angy over something I said to him and has been in one of his moods since I am home so instead of offering me a cup of coffe or bowl of oatmeal in the morning he walks right past me, this is very hurtful but this too shall pass. I tell myself I am a strong person and can take care of myself.

mp327

qv62 said:

Thanks to all for the prayers and good wishes, I had surgery on Fri and I am now home recovering. All went well and the doctor feels confident that everything removed was pre-cancer, just waiting on the official pathology. I have my post op follow up next wed and I am just taking it easy until then. I have a wonderful support system of friends and I am able to sleep well at home as opposed to the hospital. My only dilema now is that my husband is very moody, he is angy over something I said to him and has been in one of his moods since I am home so instead of offering me a cup of coffe or bowl of oatmeal in the morning he walks right past me, this is very hurtful but this too shall pass. I tell myself I am a strong person and can take care of myself.

qv62

I'm happy to hear that you are home and surgery went well.  Please let us know what your pathology reports show.  I wish you all good news!

qv62

update

Hi all, just a quick update, I have not been on the board for a while but hope you are all doing well. I went back to work last week and I am doing well, I was home 5 weeks with the recovery and glad that is behind me. I have an appt this Fri with the radiological oncologist and then a six week check up with mu surgical oncologist. I feel we will be ruling out radiation and going to try a six week treatment of Aldara, has anyone heard of or used this internally ?

Marynb

qv62 said:

update

Hi all, just a quick update, I have not been on the board for a while but hope you are all doing well. I went back to work last week and I am doing well, I was home 5 weeks with the recovery and glad that is behind me. I have an appt this Fri with the radiological oncologist and then a six week check up with mu surgical oncologist. I feel we will be ruling out radiation and going to try a six week treatment of Aldara, has anyone heard of or used this internally ?

Qv
So glad for you. We will hope and pray everything looks good at your checkup. Keep us posted.

NYinTX

qv62 said:

more symptoms
Hope you all had a Happy Thanksgiving, I am counting the days to my appointment which is 3 more days, have not slept well due to all that is weighing on my mind and now my symptoms seem to be increasing, this weekend I had quite a bit of bleeding compared to the spotting in the last few weeks, the discomfort and knife like feeling has also increased anyone have this with a recurrence ?

wrong treatment

have you obtained a consult from SLoan-Kettering in NYC? or MDAnderson in Houston, TX? these are the top anal cancer centers.....the surgeries without chemoradiation go against the accepted protocol of the  http://www.nccn.org/professionals/physician_gls/pdf/anal.pdf

it sounds to me like poor medical practice if not straight illiteracy in treating anal cancer.....and they sure made a lot of $$$$$ from the multiple trauma they put you through.....

qv62

NYinTX said:

wrong treatment

have you obtained a consult from SLoan-Kettering in NYC? or MDAnderson in Houston, TX? these are the top anal cancer centers.....the surgeries without chemoradiation go against the accepted protocol of the  http://www.nccn.org/professionals/physician_gls/pdf/anal.pdf

it sounds to me like poor medical practice if not straight illiteracy in treating anal cancer.....and they sure made a lot of $$$$$ from the multiple trauma they put you through.....

NYinTX

I am at MSKCC and have great confidence in their decision, I also met with the radiological oncologist last week who confirmed with my surgeons decision to hold off on the chemo/radiation and start the aldara, at this point if I had stayed with my LI doctors I probably would have proceeded with treatment, again not having a cystal ball at this time I have to have faith