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Results from anal biopsy

rds711
Posts: 113
Joined: Dec 2011

I had my biopsy done 12/23 and today the surgeon called. Apparently the pathologist has read the tissue as cancer in situ(encapsulated of sorts , not invasive) but she vehemently disagrees. She took a large biopsy but under it was a nodule she believes has invaded the muscle (she didnt take the nodule as she thought she had enough tissue and wanted to save the muscle), she believes based on her clinical knowledge I have invasive cancer. She says with the current pathology I would not likely be accepted by an oncologist and would there fore not receive the radiation and chemo she believes I need. She says she needs more tissue for the pathologist and believes that I need to undergo another biopsy, if she takes the muscle she says I will leak stool.
This was not the news I was prepared for. I was ready to have the diagnosis of invasive cancer then undergo scans and see an oncologist to begin chemo/radiation. I am feeling very blown away. The first biopsy caused me to be in quite a bit of pain for the last week and now the thought of losing control of my sphincter is too much. I told her if thats what I need to do then so be it but I am scared. God has given me the strength I have been praying for through the last 6-8 weeks and I know he will continue to do so but I do not know how to handle losing sphincter control before I even have treatments. That means not working, more stress on my family. Has anyone had this type of news early on?

Thanks,

Randy

Phoebesnow
Posts: 448
Joined: Apr 2011

I think I have heard this mentioned b4 here, try the search engine. Have u had a pet scan, 2nd opinion? Can u feel the nodule? Try not to worry too much about the future, it is never as bad as we imagine. What do u know about this dr?

rds711
Posts: 113
Joined: Dec 2011

Thanks for responding Phoebe. I have had no scans and no second opinion. I chose this surgeon as she is Chief of colorectal surgery at a University Hospital and had searched web on her background and ratings and all were very good. This all began because I found the nodule while showering and its still there. I will use the search engine to see if there are others with similar situations, thanks for tip.

z's picture
z
Posts: 1258
Joined: May 2009

So if I understand you correctly, she wants to cut out part of the sphincter muscle.
I would get a second opinion, if the only reason shes doing that is to provide enough tissue for the pathology to prove that its invasive, to therefore get approval for the chemo/radiation.

If you don't have to lose any of the sphincter and eliminate the tumor, thats what you want. Please get a second opinion, before you proceed.

I have you in my thoughts and prayers.

Lori

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

rds
I highly recommend a second opinion before any more biopsies or surgeries. The doctor may be the head of colorectal but anal cancer is rare and there are very few cases. I was originally seen by a well regarded colorectal doctor who misdiagonsed me with rectal cancer then when he said it could be anal cancer he admitted he didn't know what my prognosis would be because he had only seen two cases in his medical carerr.

Where are you located? Maybe some of us could recommend doctors/hospitals for you.

Liz

rds711
Posts: 113
Joined: Dec 2011

Thanks Z and liz for the feedback re: a second opinion. I live in southwestern ohio, kind of between Dayton, Cincinnati and Columbus. I am going to start searching for someone in area that may be noted as anal caner specialist. Any names would be helpful. Again thanks!

mp327's picture
mp327
Posts: 2973
Joined: Jan 2010

I must concur with the others and suggest that you get a second opinion. Seeking out a doctor in your part of the country who has expertise in treating anal cancer may be the toughest challenge. You might want to get on the website for the Anal Cancer Foundation, send a message to that organization and ask them if they know of any specialists in that region of the country. Is it not possible for you to travel? I'm sure you already know that MD Anderson in Houston is renowned for treating this disease. Their expert is Dr. Catherine Eng. UCSF in San Francisco also has an expert staff, as does Memorial Sloan Kettering in NYC. If you consult with another local doc who is still unsure as to how to treat you, it might be possible to forward all of your path, scan, etc. reports to one of these facilities and do a phone consult between the two doctors. Also, there is a doctor in New York City, Dr. Stephen Goldstone, who has expertise. Do a google search and you will find him.

I wish you all the best and hope you can find a doctor who can correctly assess your case and come up with an effective treatment plan. Please keep us posted.

Angela_K
Posts: 374
Joined: Jan 2011

My cancer was first diagnosed as rectal, in situ. Turned out to be invasive anal, possible IIIB staging. Seeking a 2nd opinion, I feel, saved my life.

Please keep us posted.

Blessings to you.

Angela

mxperry220
Posts: 363
Joined: Mar 2011

I would ask her why she has not ordered Pet, MRI, and CT scans. The doctors performed all these scans as well as biopsy before they started radiation and chemo treatments. I agree with everyone that you should get a second opinion from an anal cancer expert.
Mike

rds711
Posts: 113
Joined: Dec 2011

Thanks to all of you in offering your advice. I have spent this morning searching and have contacted the Cleveland Clinic. I have been referred to one of their colorectal surgeons a Dr Gorgun who does treat people with anal cancer. I was able to get an appt this Friday. I have spoken to my surgeons office and they are being very supportive and she has asked that I take my pathology slides with me, which I have set for pick up tomorrow. They have already faxed my information to Dr Gorgun. I also verified that they have the capability of doing HRA (high resolution anoscope).

Mike, youre absolutely right and thank you. I did ask her about the scans but it appears because of the in situ path report my insurance is bulking at approving?

MP, I will definitely keep those facilities and MD's in mind and take the info with me. Financially I am unable to travel to some of the facilities you mentioned but have reviewed their websites. Thank you.

Thanks to all of you for your insight. I am a nurse but for some reason am missing such basic things such as second opinions etc things that I would have suggested to my patients. I know my mind is swirling right now. You ALL are my grounding force, God bless each of you!

mxperry220
Posts: 363
Joined: Mar 2011

Randy,
It is all about coding for insurance approval I found out. I have Aetna Insurance and they told me to make certain the doctors had the diagnosis code "preventative screening" used when submitting the claim and they would pay. You might check with your doctors about this. My insurance company will not pay for PET scans they code a surveillance screening.

pjs62
Posts: 95
Joined: Sep 2011

Hi Randy!
So sorry to hear the news you got. I understand being kind of 'blindsided' with the results. (that's how I felt when I was told mine was recurrent!) I do agree with the others to definately get a 2nd opinion. I know its a ways from you but check with Cancer Treatment Centers (http://www.cancercenter.com) There's one in Zion, Ill which is north by Chicago. But they do offer help with transportation. I talked with them when I was looking for a new cancer center for a 2nd opinion after cancer came back (or never left! ha)Apparently my original drs weren't as familiar with anal cancer as I thought. I now go to Goshen Cancer Center which has been a real blessing. (I live in Ft. Wayne, IN)
I will tell you what I've learned from my oncology drs is that an ostomy is used if control of the spincter is lost. Although I didn't want to do it, I've now decided to have the APR surgery with a perm ostomy my drs recommended. Its a major life change but will no longer be a hermit or slave to the bathrm!
I'll keep you in my prayers.

rds711
Posts: 113
Joined: Dec 2011

Thank you. It seems I was typing my message as you were posting your response. I will keep you in my prayers as well, hang in there!

Dog Girl
Posts: 100
Joined: Sep 2010

Just as a point of reference, I was dx with Stage 2 anal cancer in 2/09. My tumor was 4 cm large and sitting on my sphincter muscle. It was actually shaped like a lower case "b", with it being inside and behind the anal canal with a "stem" growing north and a PET scan showed this. It took a week for my path report to come back. My colorectal dr. (hereafter referred to as my butt dr... :) ) said it was an ugly tumor (are there pretty tumors?) with a lot of dead tissue in it. I agree the waiting was the worst. I had the std chemo (5 FU & Mitomycin) and 28 radiation treatments. I am now 31 months post treatment and everything is fine. Usually the std treatment will work for at least 50% of people overall, no matter the stage. If you are reading other posts, you will learn that all of us have probably have/had some type of control issues for either a short or longer time after treatment. I probably have some more decreased control due to the location of and radiation to my tumor, but it is generally managable. I called my treatment my "Cancer Boot Camp" in that it was going to be rough, but I would get through it and that is what I did. I believe you can do the same thing as well. Good luck and come back as often as you need to for advice and support.

rds711
Posts: 113
Joined: Dec 2011

Thank you for sharing your story. I am so glad things are working so well for you! And I like the "Cancer Boot Camp" and plan to hang on to it for my use.

To all of you who have shared and supported me, I know you know how much it means as you have all been there. God bless you all!

mp327's picture
mp327
Posts: 2973
Joined: Jan 2010

I am so glad you are getting a 2nd. opinion. Cleveland Clinic should be a good facility and I'm happy they were able to get you an appt. in the very near future. Please let us know what you find out. I wish you all the best.

Phoebesnow
Posts: 448
Joined: Apr 2011

I am wondering if they could do a needle biopsy or a guided Imagery biopsy. Hmmmm........

lizdeli's picture
lizdeli
Posts: 521
Joined: Jul 2009

Randy
I am so happy you are pursuing a second opinion. When I was first diagonosed, I was very fortunate that the company I work for has academic connections. They reached out to the head of Harvard Medical school for recommendations for hospitals that specialize in this type of cancer. Long story shortened, 3 places were recommended - Dana Farber in Boston, MD Anderson in Houston and Cleveland Clinic in Ohio. Not to say that other places don't have doctors that can treat anal cancer, I'm just saying that Cleveland Clinic was on the list and recommeneded and that I am happy you have an appointment there.

Best of luck to you. You will be in my prayers.

Liz

rds711
Posts: 113
Joined: Dec 2011

I went to Dr Gorgun at Cleveland Clinic today, took my path slides and report with me.
Very nice guy. He told me that though the path report stated squamous in situ that it also states possible focal invasive. He performed an anoscope and rebiopsied the mass. During the exam he found a second mass and biopsied that one also. He told me that he will have path results in 1 week and if I have not heard from him by next Friday to call him. I am to return to Cleveland on Monday for abdomen/pelvic CT scans without contrast then also with contrast and a chest xray. He told me if the second lesion is also squamous that he will want me to meet with an Oncologist there. He did say that it is possible to have squamous in one site and adeno in another and if the new mass is adeno it does not respond to the chemo radiation protocol typically used for anal cancer and thus could involve radical surgery. He did say that neither lesion seemed in advanced stages but we would need to wait for the scans and path reports.

I feel good about this Doc, as does my partner. He was more than willing to take time to show me on diagrams where the masses were and answer our questions and give me the next steps I need to take to aid in getting the diagnosis and treatment I need.

Of course the overwhelming fear, anxiety and tears hit again as we were starting the 3 1/2 hour drive home but this time I know there is a plan so I was able to pull it together fairly quickly.

I have such a great support system of family and friends who I know are here for me and more importantly I truly feel God has had a hand in the series of events leading up to this point, things have fallen into place... going to doctor for mass that turns out to be thrombosed internal hemorrhoid but enabled her to feel original lesion, finding all of you and your wisdom and advice, getting appt at Cleveland clinic in 3 days for second opinion. For someone who had little if any spirituality until the loss of my mom 4 yrs ago from cancer, I am learning that things happen not coincidentally but because there is a plan for each if us. In my prayers for me I have only asked for strength to get through and for comfort for my family. I can tell you I feel the strength and I am grateful. I also know I am only human and expect that I have will have trying horrible days, but I have faith he will walk with me me through it.

I want you all to know that because you vocalized on this board your concerns and advice for me, I feel I am on the right path to getting the treatment and care I need. How can I express gratitude for that??? I can only say thank you and that just seems so small!!!

.

Randy

Phoebesnow
Posts: 448
Joined: Apr 2011

Thank god you are heading towards treatment and a cure,

mp327's picture
mp327
Posts: 2973
Joined: Jan 2010

Thank you for updating us on your appt. at Cleveland Clinic. I'm glad you like this doctor and it sounds like he is thoroughly looking at every aspect of your case. Please let us know what you hear from the path report and the scans/x-ray.

Since things have fallen into place for you quickly, I would take that as a positive sign. Someone up above is definitely watching over you and all of us here are keeping you in our thoughts and prayers.

z's picture
z
Posts: 1258
Joined: May 2009

This is very fast and I'm so glad of the quick second opinion. Whatever it is it has been found at the earliest stage which is the good thing and most issues that are caught early are curable. Please keep us posted and I wish you well. Lori

mxperry220
Posts: 363
Joined: Mar 2011

Randy,
If you have not done so you might want to compile a list of questions for your doctor. I did this and it helped tremendously. I wrote down his answers as I asked each question. I did a little research on anal cancer before meeting with chemo and radiation doctors. I then compiled a list of questions. I felt much better after asking my questions and getting the responses from my doctors.

Below are a list of questions I had.

What type of cancer do I have?

Is this considered a type of anal cancer or rectal cancer?

Is this a common type cancer?

How much of tumor did colon rectal surgeon remove?

How much of tumor remains?

Will treatments begin after tumor removal heals?

How many radiation treatments will I need?

How much chemo will I need?

What will be frequency of treatments?

How long can I expect treatments to last?

What is prognosis of my cancer condition?

Is this a common type cancer?

What stage is my cancer?

How many cases like mine have you treated?

Will treatments be painful?

Will I have pain medication to control pain?

Should I expect hair loss?

What are next steps?

Will I need assisted transportation?

If so, do you have list of transportation providers?

Hope this helps.
Mike

sandysp's picture
sandysp
Posts: 830
Joined: May 2011

Hi,

I'm Sandy and I've been traveling and haven't checked in for a while. I am four months post treatment T2N1 Anal Cancer. I am so happy you checked in with this site and found the right place for your second opinion and likely the place you will need to go for treatment also, if you are diagnosed. I know that sounds overwhelming right now, but things tend to work out. You seem to have a terrific attitude and mental and spiritual focus which will serve you well. I am glad you also appear to have a supportive partner and a dear one (your mom) on the "other side" guiding you. I had two doctors tell me I needed surgery. My husband found out more than they seemed to know with a twenty minute internet search. When we did find people who knew what they were talking about, they all said go to Sloan here in New York even though Columbia is a fabulous teaching hospital and we have many fine hospitals that treat cancer in New York. There is so much trust involved in taking cancer treatment and there is great solace in knowing you are getting the right treatment for your cancer given by skillful, knowledgeable and experienced doctors, nurses and technicians. All the best to you.
Sandy

rds711
Posts: 113
Joined: Dec 2011

Thanks for your replies and well wishes. I find it amazing how a group of people I have never met in person have been able to give me me such support and awesome advice. I feel very connected and when it seems youre in the middle of chaos that is a major thing.

Mike, thanks for the list of questions I copied them into word and will take back with me on my next visit. I always have all these things in my head when I go to an appointment but seem to get in my car after feeling like I found out very little of what I wanted/needed to know, being a nurse it is very disconcerting. Thanks.

ALL of you make a difference. I have read so many your posts and I hear how hard it can be sometimes for you to relive your own personal pains and struggles in order to reach out to assist those of us who are at different places in this journey. You have compassion, wisdom and strength in degrees I can only strive to reach. NONE of you HAVE to do this, but someway, somehow you keep coming back here and giving and giving and giving. Please, please know it's appreciated! I am in awe.

One day I hope I will be able to impact someone as each have you have impacted me.

Randy

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

Another country spoken from here (well, not really, I'm from Massachusetts - but you know what I mean). Just wanted to say I hope all goes well for you. I think it's wonderful that you've been able to find answers from the great people on this forum. The people here are so caring and knowledgable, and are ready to help however they can in an instant.

Wanted to let you know that although there can be many side effects from the treatment, that's not always the case. Many folks come out of it with minor, minor side effects. I consider myself very lucky to be in this group. My heart aches for those still suffering, but I wanted to let you know, and hope that your results are the same, that three years after treatment I'm pretty much back to my regular self - with a few improvements, mostly including a closer relationship with my wonderful husband, family, and God.

My best wishes to you!

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