Newly Diagnosed: My Spouse
Hello Everyone. My spouse was newly dianosed yesterday......Squamous Cell Carcinoma (In Situ). The location of the biopsy was near the Dentate line in the Transitional zone.
He is 46.....and HIV positive but is otherwise "healthy" (he has been living with HIV for 25 years). We know that will complicate things when it comes to treatments but our main concern right now is determining how bad it is and what path to take. Right now he is scheduled on Feb. 20 (hopefully earlier!) to have surgery to remove more tissue surrounding the site and I assume do more exploration of that area.
Now that we have a diagnosis though.....we are wondering if we should move on directly to Dana Farber in Boston. My big short term concern is that the surgery (that will take place in Maine) is being done by a proctologist and I'm worried about how much they will remove and how much pain he will be in afterward. The pain from the removal of 5 mil of tissue has been pretty rough on him during the past week.....so I'm afraid of what is next. Also, from doing some reading yesterday.......I wondering is more surgery to remove more tissue is the next logical step. Do we move onto an Oncologist now.......or do we wait until after this next surgery?
Advice great appreciated!
Thank-you.
Comments
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Colorectal Surgeon
I urge you to contact a colorectal sugeon for treatment of anal cancer if you have not already done so. They are most familar with this type of cancer. I was diagnosed with Stage 2 anal cancer in 2008. My colorectal surgeon removed 1/2 of my tumor prior to treatment then I received the standard chemo and radiation treatments. He coud not remove all of the tumor due to the fact it was near my spincter muscle. For me the extraction was the most painful part of the whole process.
Mike
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Jeff
Just chiming in to agree with what has been stated. My original cancer was found through colonoscopy and the gastroenterologist biopsied what he thought might be the whole thing. He said it was in situ as well. I then went to a surgeon (not a colo rectal surgeon - but I do agree with that recommendation) and he was going to try and excise the whole thing if possible. He could not get clear margins and was concerned about sphincter damage. He obtained a second biopsy which showed that the cancer was invasive, but I was lucky it was caught very early. I went through the standard protocol treatment.
Had I found this site prior to my second biopsy, I would have gone to a colo rectal surgeon. I now see one for follow ups.
Best of luck to you both as you navigate this difficult path. This forum is a gold mine of information.
Judy
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Jeff1
I'm sorry to hear of your spouse's diagnosis. I agree with Mike, he should be seeking out a colorectal doctor who has expertise in the treatment of anal cancer. If it were me, I would try to get that appointment ASAP before he undergoes any exploratory surgery in that area. A lot of us did not have any surgery for removal of any or all of the tumor prior to getting treatment of radiation and chemo. If surgery can be avoided, I think that's a plus. A good, experienced colorectal surgeon will know how to approach this and can also help get a medical team together that has previously treated anal cancer (i.e. medical oncologst, radiation oncologist). I would think going to a large cancer facility such as Dana Farber would be an excellent idea. I just looked at their website and there is information there about treating anal cancer at their facility, so please check it out.
Anal cancer is still considered a rare disease and while we'd like to think a proctologist would be a good specialist to treat this disease or perform surgery, I think there are better options. The main goal of treatment, of course, is to get rid of the cancer without causing permanent damage to the sphincter muscles, which would result in loss of bowel control. Surgery on that area can be very tricky and healing quite complicated. The standard protocol of radiation and chemo has high rates of success and most people recover quite well from that treatment.
I believe your next move is securing that appt. with a Dana Farber colorectal surgeon.
I would also urge you or your spouse to register on the site for the National Comprehensive Cancer Network at www.NCCN.org. After a brief registration is completed, you will have access to the latest protocol for staging, treatment and follow-up of anal cancer. You will also note a section in the information that discusses treatment in those who are HIV+. Familiarizing yourself with this information will help you both in discussions with specialists in the future.
I wish both of you all the best and hope that you will come here as needed for information and support. This is a great group of people who have been there done that when it comes to anal cancer and sometimes we have answers the doctors don't. Surviving this treatment is a challenge but very doable and we can help your spouse get through it!
Martha
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More reading for you.....
Hello, Jeff. I am very sorry that your sweetheart has anal cancer and that you are both suddenly plunged into the world of squamous cell carcinoma.
Once your next step is decided, you'll want to expand your reading. Start with the NCCN site that Martha gave you. It's very important! Then, add these sites to your reading:
* American Cancer Society "Anal Cancer" section - http://www.cancer.org/cancer/analcancer/index
* National Cancer Institute "Anal Cancer Treatment" (* good info on staging) - http://www.cancer.gov/cancertopics/pdq/treatment/anal/Patient
(* explains the TNM system) - http://www.cancer.gov/cancertopics/pdq/treatment/anal/HealthProfessional/page3
* The HPV and Anal Cancer Foundation - http://www.analcancerfoundation.org/
* UCSF "Anal Cancer Info" (* This site is excellent for education, both thorough and easy to understand. The UCSF Dysplasia Clinic treats many HIV+ anal cancer patients and provides a lot of info aimed at this group, especially describing what follow-up care should be like. They perform many clinical trials; you'll see their doctors' names on a few of the journal articles cited by the NCCN's "Anal Carcinoma" article. This is a real go-to site, especially for your husband!) - http://id.medicine.ucsf.edu/analcancerinfo/0 -
Thank-you so much. This isOuch_Ouch_Ouch said:More reading for you.....
Hello, Jeff. I am very sorry that your sweetheart has anal cancer and that you are both suddenly plunged into the world of squamous cell carcinoma.
Once your next step is decided, you'll want to expand your reading. Start with the NCCN site that Martha gave you. It's very important! Then, add these sites to your reading:
* American Cancer Society "Anal Cancer" section - http://www.cancer.org/cancer/analcancer/index
* National Cancer Institute "Anal Cancer Treatment" (* good info on staging) - http://www.cancer.gov/cancertopics/pdq/treatment/anal/Patient
(* explains the TNM system) - http://www.cancer.gov/cancertopics/pdq/treatment/anal/HealthProfessional/page3
* The HPV and Anal Cancer Foundation - http://www.analcancerfoundation.org/
* UCSF "Anal Cancer Info" (* This site is excellent for education, both thorough and easy to understand. The UCSF Dysplasia Clinic treats many HIV+ anal cancer patients and provides a lot of info aimed at this group, especially describing what follow-up care should be like. They perform many clinical trials; you'll see their doctors' names on a few of the journal articles cited by the NCCN's "Anal Carcinoma" article. This is a real go-to site, especially for your husband!) - http://id.medicine.ucsf.edu/analcancerinfo/Thank-you so much. This is very tough on me mentally.....he is handling it better than me so far. I feel like I haven't had a "good cry" yet.
Next step is CT scan of Chest, Abdomen and Pelvis......and then on to first appointment with Dana Farber doctors.
I think that I may take a break from all of the reading and enjoy this time with him before treatments or more surgery.
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taking a breakJeff1 said:Thank-you so much. This is
Thank-you so much. This is very tough on me mentally.....he is handling it better than me so far. I feel like I haven't had a "good cry" yet.
Next step is CT scan of Chest, Abdomen and Pelvis......and then on to first appointment with Dana Farber doctors.
I think that I may take a break from all of the reading and enjoy this time with him before treatments or more surgery.
What a good idea to set aside all of the reading. That's similar to what I did. I obsessively read for a short period of time. When I browsed this forum I just freaked out and didn't come back here until my treatment was over.
Rest, both of you, and hold each other tight.
Janet
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Hi all.......update time.Jeff1 said:CT scan with contrast is
CT scan with contrast is scheduled for Tuesday 10AM......scared but happy that we are moving forward.
Jeff
JimHi all.......update time.
Jim and I met with 3 doctors.......medical oncologist, radiation oncologist, and gastrointestinal surgeon. Another pathologist examined his original biopsy and determined again that the Squamous Cell Carcinoma is "in situ". Once this diagnosis was determined.......surgery was scheduled. We are happy that it is not invasive at this point, but are also worried about doing surgery to remove as incontinence and colostomy are always on the mind. Jim had anal surgery back in the 90s when he was in his 20s and he is not even sure exactly what they did or if they removed any tissue. he has still not recovered from his biopsy which was 1 month ago (pain while going to the bathroom) and now this new surgery.
I guess that my question to all of you is........have any of you been diagnosed as "in situ" and treated as such? Did yoiu have surgery or chemo/radiation or a combination? I know that reoccurance is very likely......and we wonder what they will do if that happens? You can only "cut" so much before compromising the sphinter. Believe me, we are happy to have caught this early but it seems like radiation/chemo has a higher "cure" rate longterm for lets say Stage 1 then surgery alone does. Also, it has been very confusing to read up on this is there seems to be argument over the best way to treat this when you are at this stage. I guess that doctors play the statistics game.......maybe they feel that this is less risky because Jim is HIV+. If he had been Stage 1 or more then I have no doubt that chemo/radiation would have been the chosen treatment. The other thing that we worry about is they go in and cut.......find that it can't be removed with margins and he has to have chemo/radiation anyway.........or would they just watch and wait for Stage 1 invasive?
Sorry for the rambling.......opinions and experiences much appreciated!
Jeff
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SurgeryJeff1 said:Hi all.......update time.
JimHi all.......update time.
Jim and I met with 3 doctors.......medical oncologist, radiation oncologist, and gastrointestinal surgeon. Another pathologist examined his original biopsy and determined again that the Squamous Cell Carcinoma is "in situ". Once this diagnosis was determined.......surgery was scheduled. We are happy that it is not invasive at this point, but are also worried about doing surgery to remove as incontinence and colostomy are always on the mind. Jim had anal surgery back in the 90s when he was in his 20s and he is not even sure exactly what they did or if they removed any tissue. he has still not recovered from his biopsy which was 1 month ago (pain while going to the bathroom) and now this new surgery.
I guess that my question to all of you is........have any of you been diagnosed as "in situ" and treated as such? Did yoiu have surgery or chemo/radiation or a combination? I know that reoccurance is very likely......and we wonder what they will do if that happens? You can only "cut" so much before compromising the sphinter. Believe me, we are happy to have caught this early but it seems like radiation/chemo has a higher "cure" rate longterm for lets say Stage 1 then surgery alone does. Also, it has been very confusing to read up on this is there seems to be argument over the best way to treat this when you are at this stage. I guess that doctors play the statistics game.......maybe they feel that this is less risky because Jim is HIV+. If he had been Stage 1 or more then I have no doubt that chemo/radiation would have been the chosen treatment. The other thing that we worry about is they go in and cut.......find that it can't be removed with margins and he has to have chemo/radiation anyway.........or would they just watch and wait for Stage 1 invasive?
Sorry for the rambling.......opinions and experiences much appreciated!
Jeff
I was diagnosed with Stage 2 anal cancer in 2008. The colorectal surgeon removed 1/2 my tumor but was unable to remove the remainder for fear of compromising the spincter muscle. I wil say the surgery was the most painfu part of the whole process for me. The standard chemo/radiation eradicated the remaining tumor. I have been cancer free since final treatments in January 2009.
Mike
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Thanks for the response Mike.mxperry220 said:Surgery
I was diagnosed with Stage 2 anal cancer in 2008. The colorectal surgeon removed 1/2 my tumor but was unable to remove the remainder for fear of compromising the spincter muscle. I wil say the surgery was the most painfu part of the whole process for me. The standard chemo/radiation eradicated the remaining tumor. I have been cancer free since final treatments in January 2009.
Mike
Thanks for the response Mike. Was there a reason that they didn't do chemo/radiation to begin with?
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The NCCN "Anal Carcinoma"Jeff1 said:Thanks for the response Mike.
Thanks for the response Mike. Was there a reason that they didn't do chemo/radiation to begin with?
The NCCN "Anal Carcinoma" guidleines don't say much about stage Tis, except to provide this link: http://www.ncbi.nlm.nih.gov/pubmed/15890590
The UCSF "Anal Cancer Info" site says this about Tis:
Do All Anal Cancers Need to be Treated with Radiation and Chemotherapy? [http://id.medicine.ucsf.edu/analcancerinfo/cancer/treatment.html]
The standard of care for treatment of invasive anal cancer is radiation and chemotherapy. There are several situations, however, when combined modality therapy may not be necessary.
- The most obvious is when invasive cancer is not present. A diagnosis of carcinoma in situ is not invasive cancer. A number of patients and some health care providers have misunderstood this concept and patients have been unnecessarily treated with radiation and chemotherapy. This is one reason why we prefer the more accurate terms high-grade squamous intraepithelial lesion (HSIL), or anal intraepithelial neoplasia (AIN) 3, or severe dysplasia to carcinoma in situ. Patients with a diagnosis of AIN 3 must be examined carefully and biopsies of any areas suspicious for cancer biopsied, but if there is no evidence of invasive cancer then these patients could be treated using electrocautery, laser, or infrared coagulation to destroy the areas of HSIL and then followed closely.
These article are cited by UCSF: [http://id.medicine.ucsf.edu/analcancerinfo/treatment/references.html]
* Brittain PC, Carlson JW, Hawley-Bowland C. Laser ablation of squamous cell carcinoma in situ of the anal canal. A case report. J Reprod Med.1994 Nov;39(11):913-4
* Pehoushek J, Smith KJ. Imiquimod and 5% fluorouracil therapy for anal and perianal squamous cell carcinoma in situ in an HIV-1-positive man. Arch Dermatol. 2001 Jan;137(1):14-6.Did I understand you to say that you gentlemen were going to Dana Farber? There are three Dana Farber staff on the NCCN anal cancer panel, so that looks like a great place to be. If, after evaluating your specific husband, they have concluded surgery to the best plan, it just might be. Expect full explanations of why this is the best way to go, though. Asking for a second opinion is always good. It keeps everybody on their toes.
I believe that the MDs at the UCSF Anal Neoplasia Clinic do telephone consults: http://id.medicine.ucsf.edu/analcancerinfo/about.html ; http://www.ucsfhealth.org/clinics/anal_neoplasia/
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PS:Ouch_Ouch_Ouch said:The NCCN "Anal Carcinoma"
The NCCN "Anal Carcinoma" guidleines don't say much about stage Tis, except to provide this link: http://www.ncbi.nlm.nih.gov/pubmed/15890590
The UCSF "Anal Cancer Info" site says this about Tis:
Do All Anal Cancers Need to be Treated with Radiation and Chemotherapy? [http://id.medicine.ucsf.edu/analcancerinfo/cancer/treatment.html]
The standard of care for treatment of invasive anal cancer is radiation and chemotherapy. There are several situations, however, when combined modality therapy may not be necessary.
- The most obvious is when invasive cancer is not present. A diagnosis of carcinoma in situ is not invasive cancer. A number of patients and some health care providers have misunderstood this concept and patients have been unnecessarily treated with radiation and chemotherapy. This is one reason why we prefer the more accurate terms high-grade squamous intraepithelial lesion (HSIL), or anal intraepithelial neoplasia (AIN) 3, or severe dysplasia to carcinoma in situ. Patients with a diagnosis of AIN 3 must be examined carefully and biopsies of any areas suspicious for cancer biopsied, but if there is no evidence of invasive cancer then these patients could be treated using electrocautery, laser, or infrared coagulation to destroy the areas of HSIL and then followed closely.
These article are cited by UCSF: [http://id.medicine.ucsf.edu/analcancerinfo/treatment/references.html]
* Brittain PC, Carlson JW, Hawley-Bowland C. Laser ablation of squamous cell carcinoma in situ of the anal canal. A case report. J Reprod Med.1994 Nov;39(11):913-4
* Pehoushek J, Smith KJ. Imiquimod and 5% fluorouracil therapy for anal and perianal squamous cell carcinoma in situ in an HIV-1-positive man. Arch Dermatol. 2001 Jan;137(1):14-6.Did I understand you to say that you gentlemen were going to Dana Farber? There are three Dana Farber staff on the NCCN anal cancer panel, so that looks like a great place to be. If, after evaluating your specific husband, they have concluded surgery to the best plan, it just might be. Expect full explanations of why this is the best way to go, though. Asking for a second opinion is always good. It keeps everybody on their toes.
I believe that the MDs at the UCSF Anal Neoplasia Clinic do telephone consults: http://id.medicine.ucsf.edu/analcancerinfo/about.html ; http://www.ucsfhealth.org/clinics/anal_neoplasia/
I'm afraid that your sweety has discovered something very few of us ever appreciated before - that the anus is jammed packed full of nerve endings. When riled up, they take revenge! Also, if he had previous medical treatment in the area (it will be important for him to know if radiation was involoved), it might have made the area sensitive to further medical manipulation and possibly impeded healing. Some of the forum members here have surgeons that will not biopsy them once they've had radiation due to the healing issue. Mine has no such scruples >_<
This ACS forum may be of some additional help to you, but it's nowhere nearly as active as the anal cancer forum: "Gay Men Talk About Cancer" http://csn.cancer.org/forum/180
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Jeff1Jeff1 said:Hi all.......update time.
JimHi all.......update time.
Jim and I met with 3 doctors.......medical oncologist, radiation oncologist, and gastrointestinal surgeon. Another pathologist examined his original biopsy and determined again that the Squamous Cell Carcinoma is "in situ". Once this diagnosis was determined.......surgery was scheduled. We are happy that it is not invasive at this point, but are also worried about doing surgery to remove as incontinence and colostomy are always on the mind. Jim had anal surgery back in the 90s when he was in his 20s and he is not even sure exactly what they did or if they removed any tissue. he has still not recovered from his biopsy which was 1 month ago (pain while going to the bathroom) and now this new surgery.
I guess that my question to all of you is........have any of you been diagnosed as "in situ" and treated as such? Did yoiu have surgery or chemo/radiation or a combination? I know that reoccurance is very likely......and we wonder what they will do if that happens? You can only "cut" so much before compromising the sphinter. Believe me, we are happy to have caught this early but it seems like radiation/chemo has a higher "cure" rate longterm for lets say Stage 1 then surgery alone does. Also, it has been very confusing to read up on this is there seems to be argument over the best way to treat this when you are at this stage. I guess that doctors play the statistics game.......maybe they feel that this is less risky because Jim is HIV+. If he had been Stage 1 or more then I have no doubt that chemo/radiation would have been the chosen treatment. The other thing that we worry about is they go in and cut.......find that it can't be removed with margins and he has to have chemo/radiation anyway.........or would they just watch and wait for Stage 1 invasive?
Sorry for the rambling.......opinions and experiences much appreciated!
Jeff
Ouch has covered this quite well and I have little to add. Please check out the NCCN guidelines--anal carcinoma in situ is not usually treated with chemo/radiation for the reasons Ouch stated. It sounds to me like the doctors have good experience in treatment of anal dyplasia and anal cancer, so I would have high confidence in the recommendations you've been given. However, the dysplasia clinic at University of California/San Francisco would be a good place to obtain a 2nd. opinion, even if it's over the phone after sending all information to them online. Dr. Berry at that facility is highly recommended for treatment of anal dysplasia.
I wish you both all the very best and hope you'll keep us posted.
Martha
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Jeff1Jeff1 said:Hi all.......update time.
JimHi all.......update time.
Jim and I met with 3 doctors.......medical oncologist, radiation oncologist, and gastrointestinal surgeon. Another pathologist examined his original biopsy and determined again that the Squamous Cell Carcinoma is "in situ". Once this diagnosis was determined.......surgery was scheduled. We are happy that it is not invasive at this point, but are also worried about doing surgery to remove as incontinence and colostomy are always on the mind. Jim had anal surgery back in the 90s when he was in his 20s and he is not even sure exactly what they did or if they removed any tissue. he has still not recovered from his biopsy which was 1 month ago (pain while going to the bathroom) and now this new surgery.
I guess that my question to all of you is........have any of you been diagnosed as "in situ" and treated as such? Did yoiu have surgery or chemo/radiation or a combination? I know that reoccurance is very likely......and we wonder what they will do if that happens? You can only "cut" so much before compromising the sphinter. Believe me, we are happy to have caught this early but it seems like radiation/chemo has a higher "cure" rate longterm for lets say Stage 1 then surgery alone does. Also, it has been very confusing to read up on this is there seems to be argument over the best way to treat this when you are at this stage. I guess that doctors play the statistics game.......maybe they feel that this is less risky because Jim is HIV+. If he had been Stage 1 or more then I have no doubt that chemo/radiation would have been the chosen treatment. The other thing that we worry about is they go in and cut.......find that it can't be removed with margins and he has to have chemo/radiation anyway.........or would they just watch and wait for Stage 1 invasive?
Sorry for the rambling.......opinions and experiences much appreciated!
Jeff
I travelled the insitu road for 5 years, first tumor was removed in 2009 (size of a golfball) with many recurrences, lack of clear margins, many OR biopsies, and not knowing if I would come out with a colostomy (thankfully I escaped that route) the last tumor became invasive Spring of 2014 and was treated with chemo/radiation. Each surgery and tumor removal was a painful recovery, make sure you have a sitz bath on hand, pain meds and stool softeners. The others have covered lots of good info and resources and I too had a phone consult with Dr, Berry for a second opinion, he was a wonderful reassurance.
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Thank-you all for the recentqv62 said:Jeff1
I travelled the insitu road for 5 years, first tumor was removed in 2009 (size of a golfball) with many recurrences, lack of clear margins, many OR biopsies, and not knowing if I would come out with a colostomy (thankfully I escaped that route) the last tumor became invasive Spring of 2014 and was treated with chemo/radiation. Each surgery and tumor removal was a painful recovery, make sure you have a sitz bath on hand, pain meds and stool softeners. The others have covered lots of good info and resources and I too had a phone consult with Dr, Berry for a second opinion, he was a wonderful reassurance.
Thank-you all for the recent posts and info......We met with the surgeon this morning and Jim is having surgery tomorrow afternoon. I'll keep you upodated on his progress.
Jeff
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JeffJeff1 said:Thank-you all for the recent
Thank-you all for the recent posts and info......We met with the surgeon this morning and Jim is having surgery tomorrow afternoon. I'll keep you upodated on his progress.
Jeff
I hope all goes well for Jim tomorrow. Thanks for the updates.
Martha
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sending healing thoughtsJeff1 said:Thank-you all for the recent
Thank-you all for the recent posts and info......We met with the surgeon this morning and Jim is having surgery tomorrow afternoon. I'll keep you upodated on his progress.
Jeff
I'm happy that you're moving forward quickly with this. You and Jim can do this and get through it together. I'm big on alternative as well as conventional medicine so have been doing all sorts of natural therapies since my treatment ended (covering all bases) If you come across any that look interesting, let me know. I'll probably have first hand knowledge and will have done exhaustive research. By Valentines day of next year, this will be but a (bad) memory and you'll be amazed what you've weathered. Interestingly, after my diagnosis, along with the really sucko bits, I experienced some of the sweetest moments in my life...quite a mixed bag. It's all there if you pay attention. I'm in Hawaii in our very own time zone, but what time is the surgery? Many of us will want to be thinking of you at that time.
June
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June,0626june said:sending healing thoughts
I'm happy that you're moving forward quickly with this. You and Jim can do this and get through it together. I'm big on alternative as well as conventional medicine so have been doing all sorts of natural therapies since my treatment ended (covering all bases) If you come across any that look interesting, let me know. I'll probably have first hand knowledge and will have done exhaustive research. By Valentines day of next year, this will be but a (bad) memory and you'll be amazed what you've weathered. Interestingly, after my diagnosis, along with the really sucko bits, I experienced some of the sweetest moments in my life...quite a mixed bag. It's all there if you pay attention. I'm in Hawaii in our very own time zone, but what time is the surgery? Many of us will want to be thinking of you at that time.
June
Thank-you for yourJune,
Thank-you for your thoughts. His surgery is scheduled for 2:50 Eastern Standard Time.
Jeff
0
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