Looking for Anal Cancer Support

Don' let them jerk you around and wait This is a game they play. My close friend did this and her end result was she died. SO be persist but demand that you need stuff done now I was labeled a difficult patient I really don't care but I have syuff done in a very timely fashion Not the o we can do that in 10 weeks from now. I tell them in 10 weeks I might be dead and also say I am serious And it is amazing how they find an early spot. SO just put your foot down & don't let them play with you It is your life and you only have one life

So I am at the cancer center getting an iron infusion. My current hemoglobin is 6.6, up from 6.3 last month. This does not seem acceptable. They now say they are trying to get my iron up before treatments, which is crap considering I am losing blood because of the tumor in the rectum. In addition, what good is the cancer treatment if I die of heart failure waiting for an acceptable iron level.

What about a PET scan? I had 2 biopsies that were inconclusive (and painful) and a pet scan that was definitive. I agree knowing is better than waiting and wondering.

I had a PET scan, it is the reason they are sending me back for the second (painful). Meanwhile I have no definitive diagnosis or treatment plan, but they want me to get the port placed (under anesthesia) and a radiation simulation. Nurse mentioned it would be possible to place the port while I’m under for the surgical biopsy, saving me a full day and another trip under. I really just want new doctors at this point- of course I spent time and money to find out the random oncologist that took my phone calls is out of network so more time and money.

My real issue is that every step adds two weeks to the process. Read results, add new test, read results, add new tests, read results, add new tests, read results, add new tests.

You don't need to put asleep for a port placement. Hospital thinks so as it is more money in their pocket. I told them what side I wanted on which they did not like plus we are doing this under local. you feel them digging around a bit but NO big deal or pain. They said it would take 2 hours took 45 minutes. Local hospital want to do general and 6 hours. for a port placement. MONEY and more money Mayo did it in 45 minutes and I told the people at the local hospital how quick it was They did not like that as they lost money Too bad It's my pocket book and my time Just say no A word about a port my body said it was itchy for about a month

There is an organization called Imerman Angles that connects anal cancer patients with a mentor who has gone thru it all and come out fine. You get to learn things that will help with side effects, etc. I found it very useful. There is also an Anal Cancer Foundation that has more specific help, research, etc and has periodic workshops that help a lot. Both are non-profits. I'm glad I looked them up.

I just finished anal cancer treatment. Had proton radiation. ( which I highly recommend, though mayo will not do for anal cancer, yet).Took oral chemo so no need for a port. it Worked. PET scan should not be painful. What did they do? You do need to stay still with arms up, but was just uncomfortable.
Guess we are all different.

I was given treatment less than a week after sending results of scan to doctor.
No waiting.
I wish you luck. Be happy to answer any questions you have.
BTW, I found out about proton radiation facility here on mayo connect. I think person’s name was gentle or gently something like that. It really made a huge difference in my life.

I have made the decision to stop all treatments. There is no hope. I am looking at hospice.

After having 4 different cancers, I understand. I felt that way during my last bout, wondering why I kept putting myself through the process. It just didn’t seem worth it. Especially since with my genetic predisposition, this will just happen again.

Despite my despair, I finished treatment and I’m now fully healthy (and happy) again.

If you *know* that treatment won’t work, it makes sense to focus on the quality of life you have left.

But if it’s just the process itself that’s depressing you and making you feel like life is not worth living, please give it another thought.

We are pulling for you no matter what you decide.