New To Anal Cancer Diagnosis

Bottomsbroken

Hello,

I know for those who have been here for a while these questions are so repetitive and I apologize. I have read some of the survivor stories and they give me some hope for a future with my family . While some stories are terrifying . So on December 1 (officially diagnosis October 31,2023) it will be officially 30 days since I have been told what kind of cancer I have . I have had my PET scan Nov 20,2023 (results came back today November 23,2023) and will be having my port put in on November 24,2023 . My port had to be rescheduled because it was recommended I see an OBGYN to make sure there wasn’t any spread or tumors there. They found I had a urinary tract infection ( I had no symptoms ) so they couldn’t / wouldn’t do the surgery. I agreed because there were risks involved . Due to this cancer diagnosis and how quickly everything is expected to start for treatment I had to have 8 teeth pulled because the work couldn’t be completed before treatment started , during treatment ( due to risk of infection) or for 1-2 years after treatment ( something to do with a weakened bone structure and risk of deteriorating jaw). I saw in another post that if you’re allergic to sulfa you can’t use an ointment that helps with the radiation burns. I am allergic so I was told Aquaphor worked well also so I bought a huge vat of that . So now that I’ve kind of put out a history I have a few question and any help would be appreciated .

My oncologist said I would lose my hair from the treatment but did you lose your hair and if so when ?

If you weren’t able to use the special ointment did Aquaphor help you?

Are you on any other meds while going through Chemo and radiation as part of treatment?

Recommendation on best sitz bath contraption and did it seem to help?

Would a bidet or wet wipes be better for cleansing without irritation and bleeding?

Did you develop the mouth and gum sores I’ve read about and what helped with them?

Can you be around kids when going through the radiation and Chemo ? ( I’ve read about the flush twice with lid down after using bathroom after chemo then sanitizing everything)

Is there a special soap you used that seems to irritate less?

what tips and tricks gave you some comfort while going through treatment ?

Thank you all so much for any and all help.

Rebar

Thes are all good questions I have asked as well, still learning and absorbing all the info I can, which is overwhelming to say the least.

I'll try to answer a few of your questions and add some comments from my own experience ( 4 months in since a stage 4 diagnosis)

I lost my hair after the 3rd chemo treatment, approx. 9 weeks in. The worst part about this was feeling cold all the time, and I learned very quickly that wearing a bandana / hat helped keep my body temperature up.

I was prescribed 5% Lidocaine for the pain, which did absolutely nothing for me.

After my chemo port was installed, (Highly recommended, so you don't have to get "stabbed" every treatment) I was prescribed oxycontin for that pain, which was pretty intense. I was already skinny, so that surgery was painfull for a few days after. I only used the oxy's sparingly, since they cause constipation, which I was already dealing with.

Also, the chemo will affect your immune system, hence the need to stray sanitized and be careful around others to avoid catching colds.

I used Tucks for cleaning and a bit of relief up until my 1st chemo treatment, they did help.

I may be the exception, but I feel 80% of my symptoms disappeared after the 1st chemo.

However I had been using the RSO protocol for a month previous to the chemo. The "hemorrhoids" I had shrunk to almost nothing. Maybe it was the combo and the diet changes I made, I don't know.

I didn't develop any mouth sores, but I didn't have radiation either.

For comfort while going through the treatment, get yourself one of those padded donuts to sit on.

If going through chemotherapy, I strongly advise you to obtain and use Ice-cooled gloves and socks to wear during chemo. I developed neuropathy in my fingers from the chemo cocktail, and if used at the beginning you can help eliminate it from developing.

I have not heard about the being around kids thing but agree on the sanitizing and keeping everything clean.

I wish you the best of luck on your journey and feel free to reach out to me or anyone else who is or has gone through this.

It's not an easy journey, but there are things you can do to make it a bit more comfortable and get you through this.

pem

https://csn.cancer.org/discussion/327341/new-to-anal-cancer-diagnosis

Hello. I’m an anal cancer survivor stage 3b over 10 years ago. I had same treatment as you and my hair only thinned out and actually didn’t get sick from it at all. It did however throw me into full blown menopause after first chemo. I thought I had a fever that came off and on but figured out it was hot flashes. I was 44 years old. Radiation was a bit harder on me. It didn’t start to hurt until my last 10 treatments. I had 31 in total I think. It was just really red for awhile. But really afterwords it only hurt if went to washroom or tried to walk fast. Otherwise if just resting and not moving around aggressively a huge amount, I felt nothing. Cleaning that area was more difficult. I used a squirt bottle they gave at hospital after ever time I went with warm water then patted it dry. Sometimes I put a small amount of mild soap to clean it if not having a sitz bath. Just make sure area is all clean before a sitz bath so not to get a UTI. During treatment I was on asthma meds only. Never did pain meds cause didn’t need really. Did not use Aquaphor cream cause they gave a burn cream for that. I found a donut seat didn’t help. I just used a towel and twirled it up and lifted area I didn’t want to sit on. I mostly just layed and my sides or hip area when resting or flat on bank. I never wore underwear and always wore very baggy pants or skirts to treatment. I ate a lot of protein for quicker healing and for some reason a lot of oranges for the vit c. I headed very quickly after radiation. They say it can get worse for weeks after but I started healing immediately. I was so scared I was gonna get worse to but it didn’t. I didn’t go anywhere during this time due to immune system being low. I changed my whole diet. Went gluten free. Ate no processed foods and only whole foods, bread or anything that your body turns to sugar. Only ate berries and the oranges during treatment for sugar cravings. Drank only filtered water and green tea. Ate lots of cooked veggies. I stuck to that diet for 8+ years and then slowly added other foods like bread or rice sometimes. Everyone trays different to this treatment. I consider myself lucky. My hips were and still can feel stiff but I try to stretch as often as I remember. Bowel issues after we’re never an issue. It’s only now since I had a colonoscopy A few years ago I feel like it screwed up my system. But if I have to go, I have to go and I better be near a toilet. Hope this helps you and eases your bad thoughts. Reach out for more info If need to anytime. :)

Rebar

You have been through a lot, and I admire your keeping on the healthy diet for so long!

Doggirl1

I am an almost 15 year survivor of Stage 3A anal cancer. I had a 4 cm (golf ball sized) tumor on my sphincter muscle, and I underwent two rounds of two different chemo (one type was via pump over 96 hours two different times) administered during the first and last full week of tx, and 28 radiation treatments.

My hair thinned; maybe 25%-33%, but I was lucky in that I had thick hair to start off. It did grow back. Between chemo, radiation, age, etc..., my public hair did not come back fully, but that was OK with me.

Make sure you have a hand held shower nozzle. Spray bottles didn't work out for me so well after urination, so since I was commando in a gown at home most of the time once my boss forced me out on medical leave (another story for another time), I would just jump in the shower after peeing to rinse off. You quickly learn the softness level of spray that you want/need.

I was able to use Silverdene (?) for burns, but I also used Aquaphor as well. (Note: Target has a pvt label store brand that is cheaper.) I still use Aquaphor type stuff as the skin around my anus is very delicate and can break down easily if I am having to wipe alot after bms.

They pushed anti Nausea drugs before the chemo, and I had oral anti Nausea meds as well, but it was never much of an issue for me. I also filled a script for the "Magic" (?) mouthwash in case I got mouth sores, but again, not an issue for me.

My biggest issue were burns. I'll spare you the gory details, but I had both internal and external 2nd degree burns. It was bad, but not everyone has it that bad. I ended up being on two different oral morphine scripts for about 10 days. Slow release which I would take every 12 hours, and immediate release which I would take every four hours. It pretty much knocked me out, but as the immediate release was wearing off, the pain would wake me up. I had family stay with me for two weeks, but it was mainly to take care of my animals, and to drive me to my radiation & oncology appointments since I was taking narcotics. I was down to drinking one milkshake a day at that point. You know what goes in, must come out...

I have vaginal stenosis as a lingering side effect, but I also didn't do the dilation on a regular basis either. I was not in a relationship at that point, so I was not motivated. But even a pap smear now is uncomfortable for me. (I've never had a vaginal birth either.) So consider it like flossing; you may not want to do it, but it is good for you.

Since my tumor was on my sphincter muscle, and that is where the radiation was directed, and I have slight IBS (food triggered), I sometimes have lessened bowel control, so that is an ongoing side effect. But it truly is different for everyone. I'm just glad I'm here almost 15 years later to complain about the side effects.

The bad news is tx can be brutal. The good news is that it is a short course of tx. Good luck during your tx and recovery.