What do I do and what questions should i be asking?

itsmetim

Hi all!  First off let me start by introducing myself, my name is Tim, Im a 47 yo gay guy who has been HIV positive since 2007.  My cd4 count is good and am considered non detectable.  2 years ago I had a sore in my perianal region that just would not go away.  To describe it as being painful would be an understatement!  After many dr visits they finally decided that it was an absese (sp) and decided to remove it surgically.  upon my followup visit they informed me that it was a type of "low  grade squamous cell carcinoma". (At no time was the word anal cancer mentioned, instead they referred to it as a skin cancer) Being HIV positive they were hesitant in what to do.  after a few weeks they decided to do another surgery to remove any existing warts in the area and to create margins .... That was 2 years ago.   This past weekend out of nowhere I noticed a rather large lump just on the outside rim of the anus/spincter.  ( i was on holidays when this unfolded).  The mass literally grew overnight to the size of a golf ball, and again extremely painful.   During my drive home from my holidays the mass literally exploded.  Sorry for the grossness but I believe it was a mixture of blood and puss .... :-S.    Since that happened I still have a large hard mass around the anus area including perianal area.  Its not the pain that i had before it exploded but a different type of pain.  It almost feels like i got kicked in my testicles.   My bowel movements are often.  I typically use the washroom 4-6xs in the AM and 2-4x's throughout the day.  most of the time my bowel movement are diarhea if not close to it.   For about the last 2 weeks ive had a mild case of nasea, however I have been still able to eat but do have occassions where I do vomit( either in the morning or night just before bed).  My dr's have arranged for a colonoscopy ( that was about 1 month ago) but still havnt heard anything regarding having the procedure.  My dr has also ordered a MRI but again still waiting for that.  I plan on going in to see my dr tomorrow and am wondering if anyone has any feedback regarding questions i should be asking.  Any help would greatly be appreciated!!!  Thx in Advance! ~ Tim

 

dpatter03

I'm sorry for you that you

I'm sorry for you that you are here and writing.    However, am glad you found this site to ask questions.   As you know, there is a lot of good advice to be had.

 

I think you should consult with your primary care provider and explain the golf ball size lump.   It deserves instant attention.   At the very least you should ask for a biopsy of it.   You may also need a scope of your anal/rectal area for the biopsies.  A colorectal surgeon may be a good contact, but you may not be able to get in right away.

 

My concern is that if you have that much infection going on, you may become septic, so I feel you need at least some antibiotics, if not medical management of the lump.   If you cannot get into your primary care practitioner, would you go to the emergency room?

 

Good luck and keep us posted.   Hopefully others will comment soon!

mp327

Tim

I'm sorry to hear of your issues.  Given your history, you should definitely be seeking a correct diagnosis.  I'm glad you'll be seeing your primary physician, but please insist on a referral to a colorectal specialist for a thorough exam of the area, including an anoscope, which allows the doctor to view the anal canal.  This is the best way to check for any tumor in the anus.  A colonoscopy, unfortunately, is not really the best way, as it views the rectum and colon.  Insist on anoscopy.  I wish you all the best and hope you'll let us know what you find out.

Martha

 

 

mxperry220

Questions

Below are a list of questions I had for my radiation oncologist.

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 Colorectal 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?

nicotianna

mxperry220 said:

Questions

Below are a list of questions I had for my radiation oncologist.

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 Colorectal 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?

Questions

Ditto to the above from mxperry!  Add:  How many AC patients have you treated?

Nic

itsmetim

Thank you all for the great

Thank you all for the great feedback.  Today I met with a dr who did a quick exam.  (My reg dr is on holidays) He referred me to my original surgeon who did the first surgery.  Just waiting for an apt.  His concern was different than mine.  He stated that there is a hard mass just on the outside of the anus, however when he did a digital exam he said he felt nothing.   I however am concerned with the pain.  Its a different pain than what i experienced in the past.   In the past the pain was extremely painful to the point that i couldnt sit.  This pain is dull but constant.   It almost feels like i got kicked in my " kibbles and bits". I tried to explain this as best i could, ( i recently moved to the french area of canada with my bf), that being saif my french is not the best.  Anyway, that being said i guess i just wait for my meeting with the original surgeon, and hopefully it will be sooner than later.   I guess my greatest fear is not only the unknown but also the dreaded "chemo" word and/or radiation.   Simply put im not sure my body would sustain such treatments being HIV positive.  My bf says not to think about it ....but how can I not think about it when its all I feel.  sorry for the rambling and again thanks for listening!   ~Tim 

jcruz

itsmetim said:

Thank you all for the great

Thank you all for the great feedback.  Today I met with a dr who did a quick exam.  (My reg dr is on holidays) He referred me to my original surgeon who did the first surgery.  Just waiting for an apt.  His concern was different than mine.  He stated that there is a hard mass just on the outside of the anus, however when he did a digital exam he said he felt nothing.   I however am concerned with the pain.  Its a different pain than what i experienced in the past.   In the past the pain was extremely painful to the point that i couldnt sit.  This pain is dull but constant.   It almost feels like i got kicked in my " kibbles and bits". I tried to explain this as best i could, ( i recently moved to the french area of canada with my bf), that being saif my french is not the best.  Anyway, that being said i guess i just wait for my meeting with the original surgeon, and hopefully it will be sooner than later.   I guess my greatest fear is not only the unknown but also the dreaded "chemo" word and/or radiation.   Simply put im not sure my body would sustain such treatments being HIV positive.  My bf says not to think about it ....but how can I not think about it when its all I feel.  sorry for the rambling and again thanks for listening!   ~Tim 

a possible resource

You may be able to get information on anal cancer and being HIV positive on the anal cancer info page of the UCSF Medical Center  - http://id.medicine.ucsf.edu/analcancerinfo/

 

Janet