New and Need Support!

Gigi01

Hi everyone. I'm a divorced 56 year old heterosexual woman and had this irritating condition between my buttocks for about three years before it was diagnosed by my OBGYN.
I've been diagnosed with high-level squamous cell carcinoma in situ of the perianal region. I've had two biopsies, a colonoscopy and am scheduled this week to have a wide local excision of the external area located just above my anus. The area of concern is about an inch in diameter and I know the excision will go beyond the margins to be on the safe side. The cause of the carcinoma in situ is HPV.

Approximately 20 years ago, I had a partial hysterectomy (they left my ovaries) due to HPV and Level III dysplasia. Until now, I haven't had any further problems although my doctors have told me that I've probably had the HPV dormant in my system for many years.

I don't know if this is actually anal cancer and if it's not and I'm in the wrong place, please tell me. I know it's not colorectal cancer - that's been confirmed.

I've read a lot of information that's out there on the internet about carcinoma in situ and I have been trying to educate myself about the disease and the procedure.

I understand the surgery I'm going to have this week will include - along with the excision - a total of twelve biopsies both externally and inside my anus to make sure the cancer hasn't spread.

What's confusing to me is that my colorectal specialist tells me I don't have cancer, but yet he is doing the biopsies to make sure "it" hasn't spread. He told me the term "carcinoma in situ" is a misnomer and that it's actually just a high level dysplasia.

Naturally, I'd rather have a high level dysplasia than actual cancer - who wouldn't - but this doctor just seems to be giving me a song and dance. Maybe he won't really know the true level until he does the excision and biopsies. He's difficult to talk with and is very matter of fact about the whole thing.

On the one hand he tells me that the post-surgical treatment is extremely important: sitz baths, cleanliness, rest, etc. On the other hand, he tells me I should be up and about and ready to perform my usual activities within two weeks. Then, on the other hand he tells me that because this is an open excision - there will be no sutures, graft or flap - it will take two or three months to heal. But in the meantime, I can put a gauze pad in place and pretty much go my merry way with no worries about infection. In the rectal area?? Really??

Does anyone out there have any personal experience with this type of thing? Any input, experience, advice or help would be greatly appreciated. I'm so nervous about this whole thing and at the time I terribly embarrassed.

Thanks for any help and support you can give.

mxperry220

Second Opinion
You might want to get a second opinion before anything is done. It sounds like you and your doctor might not have the right chemistry with each other. It is critical that you be completely comfortable with your doctor and you are trusting them with your life. In my case they did a colonoscopy, PET scan, CT scan and MRI before any surgical procedures.

mp327

Hi Gigi--
I concur with the recommendation of getting a second opinion. I don't know where you are located, but the University of California/San Francisco has an excellent dysplasia clinic. One of their doctors with expertise in anal dysplasia is Dr. Berry. Google their website and you'll find tons of information. If you have trouble getting to the website, go to analcancerfoundation.org and I think you'll find a link to it. I know of someone who is being treated by Dr. Berry and they have some procedures that they do there that don't sound as invasive as what your doctor has proposed. I have read a little about anal carcinoma in situ and most information concludes that radiation and chemo are not done in these cases. However, there is a procedure called "aceto whitening" that you might want to google. This could be one of the techniques UCSF uses to detect and then treat CIS, but I'm not sure. See what you can find about it. Also, with your persuasion (or insistence!), perhaps your doc would do a phone consult with the docs at UCSF. I wish the very best and hope you get some answers that you are comfortable with. Please keep us posted.

lizdeli

mp327 said:

Hi Gigi--
I concur with the recommendation of getting a second opinion. I don't know where you are located, but the University of California/San Francisco has an excellent dysplasia clinic. One of their doctors with expertise in anal dysplasia is Dr. Berry. Google their website and you'll find tons of information. If you have trouble getting to the website, go to analcancerfoundation.org and I think you'll find a link to it. I know of someone who is being treated by Dr. Berry and they have some procedures that they do there that don't sound as invasive as what your doctor has proposed. I have read a little about anal carcinoma in situ and most information concludes that radiation and chemo are not done in these cases. However, there is a procedure called "aceto whitening" that you might want to google. This could be one of the techniques UCSF uses to detect and then treat CIS, but I'm not sure. See what you can find about it. Also, with your persuasion (or insistence!), perhaps your doc would do a phone consult with the docs at UCSF. I wish the very best and hope you get some answers that you are comfortable with. Please keep us posted.

Gigi
Glad that you reached out. Over the course of two plus years I have met two people who had anal cancer "in situ". I met them while waiting to see my oncologist on different occasions at MD Andersaon in Houston. In both cases, neither of them had to have chemo or radiation but they did have some surgery similar to what you described. I think you mentioned that the spot is 1 inch in diameter. And you mentioned biopsies in 12 locations. I can't recall anyoone having that many biopsies to determine if it has spread. As the others here have mentioned, a PET scan, CT scan, scopes, endoscopsy (I don't remember the spelling, I had so many scopes over the last few years) ultrasounds, etc. are usually done to determine if it has spread. I am not a doctor so this is just my opinion and I agree that you should get a second opinion before they biopsy so much and proceed to surgery. The good news is that if it is in situ, which it very well may be that is really good (not that any of this is good). But it likely means you don't need treatment.

Since anal cancer is so rare it's very important to insure that you are working with a doctor who has expereince in this area. Sometimes, although not ideal, it does mean venturing outside of a person's locale to locate such a doctor. If you let us know what state you are in I'm sure we can provide additional references.

Wishing you the best.

Liz

lizdeli

mp327 said:

Hi Gigi--
I concur with the recommendation of getting a second opinion. I don't know where you are located, but the University of California/San Francisco has an excellent dysplasia clinic. One of their doctors with expertise in anal dysplasia is Dr. Berry. Google their website and you'll find tons of information. If you have trouble getting to the website, go to analcancerfoundation.org and I think you'll find a link to it. I know of someone who is being treated by Dr. Berry and they have some procedures that they do there that don't sound as invasive as what your doctor has proposed. I have read a little about anal carcinoma in situ and most information concludes that radiation and chemo are not done in these cases. However, there is a procedure called "aceto whitening" that you might want to google. This could be one of the techniques UCSF uses to detect and then treat CIS, but I'm not sure. See what you can find about it. Also, with your persuasion (or insistence!), perhaps your doc would do a phone consult with the docs at UCSF. I wish the very best and hope you get some answers that you are comfortable with. Please keep us posted.

Gigi
Glad that you reached out. Over the course of two plus years I have met two people who had anal cancer "in situ". I met them while waiting to see my oncologist on different occasions at MD Andersaon in Houston. In both cases, neither of them had to have chemo or radiation but they did have some surgery similar to what you described. I think you mentioned that the spot is 1 inch in diameter. And you mentioned biopsies in 12 locations. I can't recall anyoone having that many biopsies to determine if it has spread. As the others here have mentioned, a PET scan, CT scan, scopes, endoscopsy (I don't remember the spelling, I had so many scopes over the last few years) ultrasounds, etc. are usually done to determine if it has spread. I am not a doctor so this is just my opinion and I agree that you should get a second opinion before they biopsy so much and proceed to surgery. The good news is that if it is in situ, which it very well may be that is really good (not that any of this is good). But it likely means you don't need treatment.

Since anal cancer is so rare it's very important to insure that you are working with a doctor who has expereince in this area. Sometimes, although not ideal, it does mean venturing outside of a person's locale to locate such a doctor. If you let us know what state you are in I'm sure we can provide additional references.

Wishing you the best.

Liz

Gigi01

mxperry220 said:

Second Opinion
You might want to get a second opinion before anything is done. It sounds like you and your doctor might not have the right chemistry with each other. It is critical that you be completely comfortable with your doctor and you are trusting them with your life. In my case they did a colonoscopy, PET scan, CT scan and MRI before any surgical procedures.

Thanks MX. I called the
Thanks MX. I called the surgery center this morning, and evidently my specialist is one of the top colorectal physicians in this area. They did, however, say that he wasn't exactly known for his "bedside mannner".

Gigi01

mp327 said:

Hi Gigi--
I concur with the recommendation of getting a second opinion. I don't know where you are located, but the University of California/San Francisco has an excellent dysplasia clinic. One of their doctors with expertise in anal dysplasia is Dr. Berry. Google their website and you'll find tons of information. If you have trouble getting to the website, go to analcancerfoundation.org and I think you'll find a link to it. I know of someone who is being treated by Dr. Berry and they have some procedures that they do there that don't sound as invasive as what your doctor has proposed. I have read a little about anal carcinoma in situ and most information concludes that radiation and chemo are not done in these cases. However, there is a procedure called "aceto whitening" that you might want to google. This could be one of the techniques UCSF uses to detect and then treat CIS, but I'm not sure. See what you can find about it. Also, with your persuasion (or insistence!), perhaps your doc would do a phone consult with the docs at UCSF. I wish the very best and hope you get some answers that you are comfortable with. Please keep us posted.

HI Liz
As I mentioned above, he is one of the top colorectal/cancer specialists in this area and came highly recommended by my primary care physician (who did the diagnosing biopsy). Evidently the biopsies are very small and are done in a small circumference around the "in situ" area as well as internally. Unfortunately, it's a little late to get a second opinion since the surgery is tomorrow morning and I've already paid the doctor and surgery center. However, if the biopsies reveal any further abnormality (let's hope not!)I intend to have any further treatment done by an oncologist or will at the very least get that second opinion. Thanks again for your help!

Gigi01

mp327 said:

Hi Gigi--
I concur with the recommendation of getting a second opinion. I don't know where you are located, but the University of California/San Francisco has an excellent dysplasia clinic. One of their doctors with expertise in anal dysplasia is Dr. Berry. Google their website and you'll find tons of information. If you have trouble getting to the website, go to analcancerfoundation.org and I think you'll find a link to it. I know of someone who is being treated by Dr. Berry and they have some procedures that they do there that don't sound as invasive as what your doctor has proposed. I have read a little about anal carcinoma in situ and most information concludes that radiation and chemo are not done in these cases. However, there is a procedure called "aceto whitening" that you might want to google. This could be one of the techniques UCSF uses to detect and then treat CIS, but I'm not sure. See what you can find about it. Also, with your persuasion (or insistence!), perhaps your doc would do a phone consult with the docs at UCSF. I wish the very best and hope you get some answers that you are comfortable with. Please keep us posted.

Thank you MP!
I'm in Central Fla. but I'll definitely look up Dr. Berry's website.

Bella_G

Gigi01 said:

HI Liz
As I mentioned above, he is one of the top colorectal/cancer specialists in this area and came highly recommended by my primary care physician (who did the diagnosing biopsy). Evidently the biopsies are very small and are done in a small circumference around the "in situ" area as well as internally. Unfortunately, it's a little late to get a second opinion since the surgery is tomorrow morning and I've already paid the doctor and surgery center. However, if the biopsies reveal any further abnormality (let's hope not!)I intend to have any further treatment done by an oncologist or will at the very least get that second opinion. Thanks again for your help!

Hope your surgery went well.
Gigi01-
I hope your surgery went well and that you don't have to wait too long for biopsy results. I just finished my 6 weeks of radiation/2 weeks chemo today and am looking forward to making a strong recovery.

Please let us know how you're doing.

-Bella

RoseC

Bella_G said:

Hope your surgery went well.
Gigi01-
I hope your surgery went well and that you don't have to wait too long for biopsy results. I just finished my 6 weeks of radiation/2 weeks chemo today and am looking forward to making a strong recovery.

Please let us know how you're doing.

-Bella

Best wishes
Congratulations Bella! Next week might be a bit rough, but things will heal up soon.
Gigi - hope things went well today.

shirlann54

Gigi01 said:

Thank you MP!
I'm in Central Fla. but I'll definitely look up Dr. Berry's website.

Gigi01
I,ll be thinking about you i know you . You will be just fine.I have had 6 biopsies.Its been a year now .That i have been done with my treatments.It took 3 biopsies for it to read cancer .The Dr said my cancer was hideing. I took 3 to show it was gone.

lizdeli

shirlann54 said:

Gigi01
I,ll be thinking about you i know you . You will be just fine.I have had 6 biopsies.Its been a year now .That i have been done with my treatments.It took 3 biopsies for it to read cancer .The Dr said my cancer was hideing. I took 3 to show it was gone.

Thinking about you GIgi!
Waiting to hear your good news! Sending positive vibes your way.
Liz