Diagnosed yesterday

tercure said:

Thank You!

Thanks so much each of you for your kind words and support.  It has been difficult to learn of this illness at this time.  I already am feelinng the warmth of others who have experienced this and want the best for me. I can't wait until I too am able to turn around and offer support to newbies when I am done with treatment.  I am applying moisturizers to the pelvic area daily after bath to prepare for the radiation.  I intend to get a hand held shower to use after BM's.  I also want to have the Domboro soaks ready.  I like the plastic spray bottle in the fridge idea also.  I am thinking about putting a bedside commode next to bed, so I will not have so far to go.  I also want to get waterproof pads for bed.  Does anyone know how long the wait is after the port is inserted before it can be used?  I have two books "The Chemotherapy Survival Guide" (McKay Schacher) and "Chemotherapy & Radiation For Dummies" (Lyss Fagundes Corrigan).  Love hearing your tips and advice!

I also referred to "The Chemotherapy Sirvival Guide" during treatment and there are lots of good tips in there.  As for use of the port, it can be used immediately after insertion.  Many people will get their port put in in the morning and begin chemo a few hours later.  One tip that hasn't been mentioned here is getting lots of protein in your diet.  Try to get some with every meal and snack.  It promotes healing.  Pain meds can constipate, but I would not let that stop me from taking them as needed.  Just be sure to have Miralax and stool softeners on hand.  You can do this, really you can, and we are here to help you!

Hi Thom

You’ve come to the right place for support and shared experiences.  I’m now almost 15 months post-treatment and overall doing pretty well.  You’ve already gotten some good advice from others so I’ll try not to repeat.  

Things that I remember -

I spent a little time reading about this cancer and browsing through some of the conversations here and then I just stopped taking in any new information.  I was too freaked out to spend much time here.  I didn’t come back until my treatment was over.  I handled this experience by just putting my head down and moving forward slowly, sometimes a day at a time sometimes a minute at a time.  However you approach this is what is going to be right for you.

I couldn’t keep myself hydrated enough even though I tried.  I had bad cases of thrush after each round of chemo and it hurt so bad to swallow.  I went into the infusion center 2 or 3 times a week for hydration continuing for several weeks past the end of treatment.  My port really got a lot of use.

Protein - I made myself smoothies daily with greek yogurt, frozen fruit and whey protein powder.  I pretty much lived on those plus toast and ice cream.

I was on pain meds even before I started treatment because I’d needed a gynocological surgery (possibly related to the cancer - possibly not) so I juggled the oxy, stool softeners and miralax from the beginning.  I didn’t have diarrhea until the very end and was able to deal with it just by discontinuing the miralax.

I used at various times aquaphor compounded with lidocaine, hydrocortisone cream, neosporin and then after the treatment ended silvadene.  My burns healed pretty quickly.

I took 7 months off work.  I needed that time for my physical and mental well-being.  Others work during treatment or return to work sooner than I did.  Everyone’s experience of this is different.  I hope you don’t have to wait a long time before you start treatment.  I had about 6 weeks to wait as I got the surgery, had all the scans and consultations.  It seemed like forever and it really was better once I started treatment.  I live alone but I had a cadre of friends who drove me to all my appointments and who checked in with me regularly.  I hope you have friends or family who will be able to help you out.

I wish you well on this journey.

Janet

Thom, i was diagnosed in june 2013. i went thru the treatments chemo/ radiation although it was scary and painfull i am glad to say the tumor is gone. if you need any support feel free to message me. good luck brother.

You are in the most difficult period. After they did my biopsy they sent me for a CT scan and found more tumors in my "pelvic bowel". I was terrified that it was all the "invasive" anal cancer since it's all so close together.

I was lucky. After having a ten centimeter ovarian cyst removed and others that were also large, I started to feel better than I had in many years. All that was pressing on my bladder and causing nerve pain.

We really are lucky to have invasive anal cancer rather than some other type of invasive cancer. The treatment is a few weeks of mini hell but I got much better hair out of it and two and a half years later can say I feel a lot better than before my diagnosis.

It's a new life, though, after a cancer diagnosis. A lot of follow up care is vital. Some people just want to get the treatment and forget about it, but you do need to go back for regular checkups and learn way more about your body than you probably want to know.

I have a whole new relationship with myself. In a way, the cancer was good for me. I exercised all the way through it, walking and using tai chi videos (which I had been using prior to the diagnosis). When I did the Tai Chi moving meditations and standing meditations, it was pretty much the only time I wasn't in pain. So not knowing why I was in so much pain made it somewhat of a relief when I got the diagnosis. Some people don't have pain but I think it depends on the location of the tumor and it's size.

Let us know all about your stage. I totally agree that you should be treated in a Cancer Hospital that treats this cancer often even though it is rare. My doctors in Westchester County, just outside of NYC advised me to get surgery right away. I am so glad I gathered all my records and sent them to MSKCC.

Good luck and stay close.

Sandy

Welcome to this crazy experience.  It sounds like you've already learned so much about what to expect! I finished treatment in July for Stage II anal cancer.  My tumor was removed prior to diagnosis (as an unknown mass) which is both good and bad.  Good to get it out of me, but then you need to heal a bit before starting treatment.  For lotions I like Aquaphor, also a spray called Regenecare HA (amazon) and aloe gel directly from an aloe plant in my kitchen.  TAKE STOOL SOFTENERS every day!  I'm absolutely shocked no doctor told me this, but luckily I found two survivor buddies.  I also took a mild laxative daily, balancing myself on the mild side of diarrhea for maximum comfort.  Later on that will come naturally from the radiation.  If you want to take Immodium or something else for it, please start out with a 1/4 or 1/2 dose.  If you accidently swing the pendulum to constipation you will regret it!  Avoid fiber, tomatoes, too much cheese/heavy meat, and also avoid fresh fruit/ veggies which might have bacteria you won't be resistant to.  For nutrition I ate cooked carrots and sauteed spinach, no-sugar applesauce and bananas (wash skins and peel carefully to not contaminate fruit). Bananas and greek yogurt are really good for digestion!  So funny I've noticed others mention ice cream.  I started eating it when I got chemo mouth but then continued - I've never been into ice cream and haven't eaten it since treatment, but I loved having a little every day.  Weird to not eat fiber but it's too hard on your bowels: white bread instead of whole grain!  The anti-nausea med (zofran)worked great for me, no nausea and never threw up.  Did get chemo mouth - painful and annoying ... if you have time get your teeth cleaned prior to starting treatment so the gums are in good shape, very stressful for mouth and there will be days you can't brush.  Biotene really good for dry mouth, which not only makes you more comfortabe but reduces bacteria.  Wow, I didn't set out to ramble about everything, but things are just coming back to me.  Treatment wasn't too brutal until the last days and the few days right after radiation was over, but by that time you are so close to being finished!  Avoid germs and being in public - you can't risk getting a simple cold, and with your body weak from chemo, you WILL come down with anything you're exposed to.  Don't jeopardize your treatment - stay home and get on this site or Facebook if you're bored, do not go out!  When you must go out try not to touch anything, use sanitizer, and wash hands as soon as you can.  I got Tomotherapy radiation, it's a type of very finely directed radiation that helps to minimize collateral damage.  Check into it and see if that is available in your area.  Stay positive and try to communicate with positive caring friends as much as possible.  Hopefully you are in a relationship and have a caretaker, but if you don't you can still get through it fine, it's more of a psychological comfort to have somebody with you.   Good luck!!  It's tough treatment but it's a really pretty short time frame compared to other cancers.  If I had been given a choice between 3 or 6 months of easier treatment or getting it over with in 6 weeks, I would have chosen our type of regimen - you'll get your life back sooner!  Please post and let us know when you start and if you have any questions about anything.  I would love to be of help to somebody going through this shared experience.  Best Regards, A.H.