Got diagnosed with anal cancer caused by HPV

NYinTX said:

Dx t3n0m0 anal cancer - how can I find out if HPV caused it?

Don't tell me to go to "my" doctor.....to answer this question - I am into wk3 of radiation/chemo for anal cancer. Never engaged in any lifestyle choices which are associated with this type of cancer....how can I find out if I have HPV while in the midst of treatment?

Hi

Sorry about your diagnosis.  I think they can diagnosis by blood test.

azgal said:

Hi Chris, Being diagnosed
Hi Chris,

Being diagnosed is world shaking. Feeling overwhelmed and having fears is so normal. The 1 or 2 stage is optimal for a complete cure which is great news. Treatment can be rough but it is short compared to other cancer treatments. As others have mentioned there are specific things you can do to help yourself through it.

Your stage is typically a good canditate for IMRT radiation which, at a certain point, involves a more focused radiation field and results in far less damage to other surrounding organs and arteries, etc., when compared to the standard alternative radiation. It's something to seriously consider and to discuss with your oncs and the top experts in the field.

I would suggest always getting a second and/or third opinion, and if your treating docs are not top experts in anal cancer to please have your docs consult with the leading experts.

In addition to the other great advice offered here I would also suggest searching out helps on the net that have been of great help to others. These things listed are things that helped me, learned from trial and error but mostly learned from beloved experienced-others on a yahoo group with many members with anal-cancer that helped me select and survive treatment, and then some...

1) Insist on DPD deficiency testing before starting treatment. Approx 1% of patients lack the enzyme needed to process 5FU. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2563423/

2) agree to HIV testing since very critical treatment approach will depend on the results (we can opt not to know the results of the test if we choose)

3) make sure the penis and scrotum is out of the radiation field during radiation treatments

4) have 5% lidocaine on hand to numb radiation sores if you're not allergic to lidocaine. Applying this to the anal and surrounding area for sores every few hours and before BM's will greatly reduce pain. Be aware that most docs will NOT be familiar with 5%, only the 2%, but just insist they Rx 5% and they will.

5) for radiation mouth sore relief beyond what Gel-Clair can numb/handle, and what you might need at a moment's notice, what worked great for me was the script below, written exactly as below, and kept refrigerated (your docs will write it for you exactly as below as you tell them to even though they've probably never heard of it), the beloved radiation mouth-sore relief coined "Miracle Mouth Wash" by others from a yahoo anal-cancer group, can be filled at any local compounding pharmacy (even any compounding walgreens can do this):

Per 180 ML:
45 ML Lidocaine Viscous
45 ML Nystatin Susp
45 ML Diphenhydramine Elixir
45 ML Maylox Plus

6) wear very baggy boxers, if any at all, to allow the best air flow to the rad area and blow dry on cool/warm after bathing and before applying ointments (as others have said, always wash off ointments completely before rad treatment, and if the area has burns/open sores then gentle cleansing and very warm sitz baths 3-5 times a day for a minimum of 20 minutes each brings much relief.

7) disposible bed pads help with keeping resting/sleeping areas sanitary if that becomes an issue

8) Biotene mouth wash and Q-tips for cleansing the teeth/mouth if or when mouth/gums become too sore to brush

9) applying 5% lidocaine before BM's when there's irritation and applying a stream of water during BM's to help reduce acidic discomfort that can occur

10) pepcid ac along with script anti nausea meds helped control stomach upset from the other various meds

11) wiping (gently dabbing, actually) with large cotton balls saturated with water was better tolerable, and when wiping was not possible sitz bath cleansing was substituted

12) Dilauded (hydromorphone) for pain worked best for me since it did not cause stomach upset like some other pain meds had, and there's off script meds that can help with sleep and nausea while also helping with anxiety

13) having both mild anti-D and also mild stool softners on hand is recommended, especially stool softners taken 2-3x daily as directed by docs depending on the individual while taking pain meds (which can cause constipation later on in treatment) if constipation becomes an issue. Having non acidic soft and liquid foods on hand can help if digestive system sores become an issue.

14) after radiation began most foods tasted very odd, or metalic, or way too salty to consider eating, so I kept an open mind for foods that would not usually appeal to me...and I gave up eating with metal silverware because I could not tolerate the feel of it.

15) in a tiny pack I eventually carried a few disposible bed pad liners along with the ones I sat on in car rides, extra change of shorts, zip lock baggies, travel size non alcohol wipes, large cotton balls, bathroom tissues/paper towels, non stick gauze pads, a surgi bottle to fill for a cleansing water source, extra lidocaine and OTC oinment, 1-2 day's supply of all meds, and crackers or other harmless snacks to nibble as needed along with an ample supply of water. Drinking lots of water (6-8 glasses per day) helps flush the body. Moisturizing lip balm can come in handy for dry lips. As always, first ok everything with your docs.

There's so much info to help during treatment and after, and I've listed only the things I recall offhand that helped me get through it. I had a little 3 or 4 shelf unit with all supplies on it in the bathroom that made it easy for me access without help.

Wishing you all the best, Chris.

My “sherpa” (a friend who had the same cancer and the same treatment) recommended something called ELAM Cream, which is 2.5% lidocaine and 2.5% prilocaine. It's very effective for the anal discomfort caused by radiation. It can also be applied to the chemo port about an hour or two before it is accessed, and you won't feel a thing.

Chris Ptown said:

Thank you PJS62, azgal, RoseC, DogGirl and cph1127
you ALL are so amazing! i never thought perfect strangers could be so warm, friendly, loving and supportive... thanks to each of you that has responded to me I am so grateful..so i go to Mass General North tomorrow (Friday) to meet my new oncologist Dr Schwartz and my new radiation doc Dr Soto. I am anxious to start my treatments and get this all done with. I am so thankful I have you guys to chat with during and after! You guys all rock! XXOO

  Can I ask how you are now? Thanks for sharing..!