Looking for Anal Cancer Support

I am still in the diagnosis stage- last week had an appointment with a radiation oncologist who consulted with my other doctors because the large mass is actually in the upper rectum based on PET scan done on Monday. Because of the Squamos cells in pathology, they thought it was anal cancer that extended to the rectum. The treatment plan looks to be the same, but they are sending me back to the Surgeon who based his exam on the colonoscopy before the PET scan. The colonoscopy had a polyp in the anus which was not removed then the larger mass further up the rectum. The PET scan shows the polyp clearly separate from the mass. There was a question of if the Squamos cells were from the polyp because rectal Squamos cell is not common.

Hi - there was similar confusion with me at first. They told me that since it was squamous, it was considered anal, even though it was pretty high up. They said rectal cancer was an entirely different type of cancer & treatment. (I could be wrong, of course, but that’s my understanding.)

If they’ve done a CEA blood test, that may be a good hint - it’s typically negative for squamous, I believe.

Hang in there. This will be history before you know it!!

No, primary mass is in the rectum, it is T4bN2M0. There is also a smaller mass in the upper aspect of the anal canal. I am going back to the surgeon on August 8th for biopsy of anal canal polyploid lesion before final treatment plan is made. I am just waiting (patiently !?!)

Thank you for your help!

So I patiently waited and went to the Surgeon yesterday. They want to go back in and re-biopsy the proximal mass. Now I wait another three weeks for that, then wait and wait. Meanwhile, my iron levels did not improve and I go back for another day long infusion. I think I’m done. Is anyone familiar with the assisted suicide process?

I now honestly think they do not want to give me the bad news so they are stringing me along and collecting fees. Then it will be too late, too much spread and sorry.

And the stupid Mayo Clinic appointment line puts me on hold then hangs up.

No I would not take my own life, but I need options that something-anything- is going to resolve this or I am going to lose hope.

Oh gosh, @mak70. It's obvious from your quick succession of posts that you are frustrated, mad and probably scared. The waiting game is excrutiating. I really don't think they are stringing you along, but it does sound like things are not being explained well enough for you to have confidence in the care you are getting.

Rectal cancer grows very slowly. They likely want to take another and better biopsy sample to get an exact reading on the cell markers and what they are dealing with. For example tumor size, composition, vascular involvement or not, etc. This will help decide the best course of treatment and improve the outcome of treatment.

You can continue to call Mayo Clinic for an appointment, but who has time to wait on hold? Instead you can fill out the online form and tell them what time to call you. Let them know when you'll be available. Here's a link to the online form: http://mayocl.in/1mtmR63

It's not time to lose hope. It's time to get clearer answers. Are you able to call the surgeon's office to get a better understanding of why another biopsy is needed?

Thank you as always for your reply. I am quite ANGRY more than anything else. 100% meltdown, which happens. methinks I want it to be over, however that happens. The appointment link was great, although it is always frustrating to be hung up on. ( I do believe it is the phone system, not the people). The time for hope is gone, acceptance is a better strategy.