Anal Cancer

Linders, my heart goes out to you! I am so sorry you have to face this. Although I haven't been active on this site long, I found it is a good community of people here to support you. I will be keeping you in my thoughts and prayers!

Hi @Linders I’m so sorry to hear this, it must be such a shock for you after the initial news that it had gone. I hope that it has been explained to you by your treating team that incurable cancer is not the same as terminal cancer. It is possible to live for many years with an incurable diagnosis. We have a group on this site who can be found by clicking the following link https://community.macmillan.org.uk/cancer_experiences/living-with-incurable-cancer-forum/   There are people in this group who are an invaluable source of information in relation to living with cancer. Even if you don’t feel like posting it may help you to just read some of their posts.   We have also had a couple of people in this group who have had a spread of anal cancer to other organs, I hope they will see your post and be along soon to offer you some support. Bev x

I am really so sorry you have this to face.  Can I ask what the next step of treatment is?  If it is carbo/taxol chemotherapy this is one of the treatments that has been shown to sometimes work in the much longer term and there is a case that I know of (and I'm sure there are more) where a woman's cancer is being treated like a chronic illness; she has regular chemo infusions and has had them for the last ten years.

You have some good information and links from Bev and of course we are all here for you as well.  Sadly not even a supportive bunch as we have on here can take away the devastation and fear you are feeling right now, but hopefully once treatment starts again you will be in a slightly better place and feel more in control.  Please come back and let us know how things are going.

Sending a huge hug

Irene x

Hi Linders, I'm so sorry to hear this. I can only imagine how frightening it must be. What's the next step? As 1in1500 wisely states, incurable doesn't mean terminal. What options have your doctors offered so far in managing it?

Sending you strength!

Suz

Hi Linders,

First, I am so sorry to hear of your situation.  I can’t imagine how scary and frustrating it would be to feel you’re done with treatment, only to hear this kind of news.  I do not have the exact same circumstances as yours, but many similarities.

in August of 2021, I was diagnosed with SCC anal cancer, metastatic to the liver.  The primary tumor, itself, was not that large, I felt great, had only one symptom (bloody/mucous stool) which sent me to the doctor.  Initially I was told hemorrhoids, then cancer, then cancer with mets.  It was stunning.  I was 42, ran daily, did mixed martial arts/kickboxing/self-defense classes, rock climbing, taught ballet, and held down the fort at home with kids aged 7 and 9.  The oncologist in my hometown offered lots of systemic chemo for the liver mets and chemo-radiation for the primary.  She told me “this is definitely treatable, and in some cases still curable.”  She told me she could put me into remission “for a long time.”  I didn’t ask how long was her “long time.”  I have children whose babies I expect to bounce on my knee.  Anything less than that wasn’t going to be something I wanted to hear.

I sought a second opinion out of town.  That doctor was going to be more aggressive, recommending the systemic chemo, the chemo-radiation, AND something called SBRT. Stereotactic Body Radiation Therapy (I think!) He was more optimistic toward “cure.”  Still, I sought a 3rd opinion at MD Anderson in Houston.  It is widely considered the leading cancer treatment hospital in the country, and amongst the best in the world.  I figured they’d offer me what doctor number 2 offered.  Instead, they also suggested the systemic chemo, the chemo-radiation, BUT they offered me a liver resection surgery to remove the larger liver mets, and microwave ablation to obliterate the smaller deeper mets.  They were VERY optimistic of “cure,” so I chose their plan.  I finished systemic chemo in early December , finished chemo radiation in late January, had the surgery in early March, and was declared NED in April.  Furthermore, the biopsy of the surface live met showed no live cancer cells (thank you, systemic chemo!)!  As of today, literally this morning, I am still NED.

As you know by now, every single cancer patient and diagnosis is a little bit different.  MDACC did some tests, including genetic tests, to determine the best course for me, and not every plan will be for every patient, BUT, I encourage you to keep asking questions.  Ask about carboplatin-paclitaxel systemic chemo, ask about SBRT, ask about liver resection and microwave ablation.  It doesn’t hurt to ask for what might be other options for you.  This is your LIFE!

Big hugs and big hope to you!

Red