Alicia's Cancer Blog

Thrilled but skeptical here...

So I am beyond happy to report that I am now 6 weeks out from treatment (can't believe I a saying that!)!  Healing and dipping my toes into getting back to living, yay.  My medical oncologist wanted me to see my surgeon on 3/27, which everyone agreed was really too soon for any real exam or scope, besides we all know it can take months for the tumor to be gone.  The day arrived and I was game.  Except for one small stubborn external spot that will not heal, I feel pretty good and told him I thought an exam would be fine, and he said okay, skeptically.  The exam was not uncomfortable and he could not find the tumor (which was small originally) digitally, so he went ahead and scoped.  He said that it looked pristine and he saw no evidence of the tumor, and he couldn't even tell that I had been radiated!

This is, of course, better news than I could have ever imagined, but I know my journey does not end here.  Since my doctors rarely agree on anything, I am wondering what exactly has to happen before I am determined cured, or NED, or whatever signals the good-to-go.  Of course I see the radiation oncologist in a couple of weeks and then back to the medical oncologist in May, but I am seriously starting to value your opinions over theirs!

Love to you all and thank you so much for helping me get through these awful months, I hope I can do the same for someone else. 

In the meantime I am trying to learn this language my stomach is speaking...LOL

3 people like this post.
Annabelle threw a punch at your cancer.
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Congrats to you, Alicia! I felt some of that same confusion when my treatment was over and the oncologist, , radiation oncologist, and colorectal surgeon all told me different follow up regimens. I sent an email that went to all three of them together and I explained my confusion. They conferred with one another and came up with the most up to date follow up scheme, following the NCCN guidelines. Don’t be afraid to speak up and voice your confusion! And also check those guidelines your self on line-it is a very helpful resource. I hope you continue to heal-good for you with the minimal radiation damage “down there!”
Alicia, Donna like this comment
Good for you! The post treatment can have you stressed especially at test time and years afterwards. Little things crop up here and there and you learn to cope. Keep on marching forward!
Hi Alicia...want to strongly recommend the NCCN guidelines as a way to track post-treatment health. And hope you just keep on dancing with NED!
Alicia likes this comment
Helen, how get to NCCN guidelines please.
NCCN.org then sign up for an account., it's free. Use the "professionals" page for the best info. They update it about once a year, as research evolves. X
Cheryl likes this comment
Thank you Tyndall!
Thank u Tyndall
Great news! Celebrate life and all the joys of your recovery!!!
Alicia likes this comment
This is wonderful! I share your confusion though. The lack of conmunication between MDs has been very frustration for me.
Were you asking when you are NED? I have the same question, if so.
So happy for you though, no thing like getting great news.
Alicia likes this comment
I guess I am asking that, because my tumor never showed up on a CAT or PET scan, so neither of those could diagnose anything besides spreading to nodes etc.
Wow, your PET never lit up? Your tumor must've been really really small. Nice. Congrats too! Very happy for you.
It was small - I think more ulcerous than bulbous.. and biopsy was done. Thank you
Did they have a plan for the external spot that hasn't healed?
They are not concerned. Topical creams, keep it clean, air it out when possible, and give it time.
Easterly likes this comment
Congratulations on getting such great news!
Wow, that is excellent news! My GI doc on my first scope, (I was asleep for that one), said the same thing about me. Alas, now I do have radiation proctitis, which flares up sometimes, but really is more of a nuisance for me than anything. I knew that it could develop months later, lets hope you escape that one.
NCCN has a schematic that is used for follow up, find your stage and do what it says. The docs all want their piece of the pie, so to speak, and once I started seeing a CR for the anoscopies, my Rad Onc told me that would be fine, unless I needed to see him for specific problems. My medical onc. wanted to follow me closer, because I developed chronic anemia from the treatment. I now am 5+ years out, and see NOBODY unless I have a hunch that I need to, so far, so good!
Right now my only problem is food doesn't taste good, because...wait for it...I got braces at age 65! WTH was I thinking? But I've lost a few pounds, a good thing!
You are an inspiration already!
Easterly likes this comment
Oh wow yeah what were you thinking? That's funny, but ow! Thanks for the advice!!
Hmmm, Braces...hmmm
Haha, somebody told my husband the first thing women get are braces and a boob job when they get a divorce!
My bottom teeth were becoming twisted and crowding, and I had no idea this happened to us old people :) My smart hygienist said it is common, so my sweet husband said get braces if you want. I am so vain about my teeth! And you have to get the tops done too or your bite gets screwed up. Bit off a little more than I can chew, haha
Easterly likes this comment
I'm so glad for you Alicia. I'm now 8 weeks today out from treatment and reading yours sounds where I'm at now. I still have one sore that hasn't healed yet so my radiaologist is sending me to the wound center in our area which I'm nervous about.yes and my stomach has a language of its own now too and merver know when it's about to speak,lol. Also dealing with something else, my teeth. I got up one night for potty and passed out,hit my tub and cracked my teeth on my upper partial. The one side of cracked enough to fall out (was cemented in)so waited til treatment was over and went to dentist yesterday after terrible jaw pain and swelling over the weekend,I went. He has to make me a whole new bridge plus pull 7 teeth that was helping hold it in.I have my oncologist conferring with my dentist to get me through this now. My hair is finally growing back is about 3" all around so I have that going for me. Again so happy for you and hope to be altogether again soon.
Awesome news!
Happy birthday week!
Alicia likes this comment
Hope you have made some progress and can celebrate your birthday in style!
Happy yesterbirthday Alicia. hope u enjoyed to your little hearts content. Peace and love.
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Bladder Irritation

Today was day 13 of radiation.  I am doing great aside from low plateletes and some bladder issues.  The pain is like a UTI.  Burning, need to pee. hurts to pee.  Nothing helps and I forgot not to take Advil.  Drinking lots of water, cranberry juice, taking AVO.  Urinalysis is showing no signs of bacteria or blood so far.  They took another today, but he wants to swab my urethra to see if we can determine the cause or at least rule out infection.  Is this not just another common side effect of the radiation and chemo?  

Sandy sent you a prayer.
3 people sent you a hug.
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This is a very common side effect of the treatment. It was described to me as peeing razor blades, and as I remember it that’s an accurate description. What helped me the most was using a peri bottle full of water and squirting water down there while urinating. And keeping up on pain meds. I know, no fun. Hang in there!
Kim likes this comment
I did the same as Terri...squirted water bottle while urinating, major life saver. Sorry Alicia!
Yep that was really a problem. I loved just soaking in a warm bath.
Kim likes this comment
I hadit too, it was so bad I was crying in the bathroom. Had to get a catheter for a spell.
I'd recommend skipping the cranberry juice, it makes the urine more acid. So does citric acid, which is in lots of drink powders, Gatorade, etc. Swabbing urethra? Um no. That will add to your misery. If clean catch urine is negative, it's from radiation. More water dilutes the urine and it burns less. Get a Rx for Xylocaine jelly 2%, and apply a little externally. Lots of tub baths help. Pee in the tub if you have to, or use a squirt bottle, like an old dish soap bottle, while you go. So sorry! This sucks, really!
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Sorry about the peeing pain.. i had a towel to chew on when i was going through this.. and pain meds. hugs and all the best during this difficult journey.
Radiation gave me urinary issues too. I got to the point I couldn't urinate at all due to things swelling shut. Felt like my bladder was going to pop. Had to go to the ER. They shoved the largest catheter they could find in there and left it a couple weeks. Such a horrible experience.

The doctors like to downplay everything so they don't scare patients away but the know the radiation screws up everything anywhere near your butt. I almost feel like they should have to go through treatment themselves before being able to administer it to others.
Kim, Alicia like this comment
So true!!!!
Radiation definitely creates bladder pain. I don't think any of us did not experience something like your pain! Post treatment UTIs can be an issue (Urinary Tract Infections) as the damage to the bladder area can make it easier for bacterial infections to take hold, and there may be problems with "keeping clean" around the neighboring anal area. If you develop a UTI (cystitis) you will know it! Cipro is one effective antibiotic for that.
Thanks Helen. I did know it for sure, I have had them and know my body, but have never been through this before, so thought the pain could just be irritation. I think Doc thought it was in my head!
Absolutley, this is so common. Just imagine the radiation effects on the inside will be like the stuff you can see outside. So, this is normal in my opinion. I used a bottle of waterpoured over my front bits to dilute the pee during this time. Later on I peed into water with a plastic bidet in the toilet seat. It stopped the stinging sensation. And use a local pain med like lidocaïne/xylcaine 2%.
I also experienced that too--it was miserable. I'm sorry you are having this side effect. I found no relief, but you have gotten a good suggestion above--try the peri bottle suggestion. Drink lots of water and avoid anything that will make more urine more acidic. At the very least, I hope it gives you some relief to know that this is a common side effect among a lot of us. Hang in there!
Update - After a physical exam which is not showing much irritation, I insisted they test urine again and it is positive for infection this time. Thank you for all the helpful advice! I have my squirt bottle of water and 2% lidocaine which helps. Results of culture today will determine antibiotic.
Tyndall, Helen Marshall like this comment
Glad you insisted! Advocate on!
So sorry Alicia, I was spared this side effect but seems like others have really good ideas on how to relieve this problem to give u some comfort.
I loved lying in the tub, but near the end it was a big effort to climb in and out of the tub several times a day; I used a sitz bath (warm water) several times a day and found it a bit soothing.

also, tried to lean forward so that pee went straight into the toilet bowl and didn't touch the surrounding skin which was very irritated from the rads
Thinking of you!
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Vital Info

Posts

November 29, 2018

Hot Springs National Park, Arkansas 71913

April 18, 1963

Cancer Info

Anal Cancer

Skin Cancer

Squamous Anal

November 17

Stage 1

0.1 - 1.0 cm

No

Mitomycin

Genesis Cancer Center

February 15

None for the anal (I have always had irritable bowel) except 2 squamous skin on calf and shoulder and my dermatologist told me to get a colonoscopy because the outside can signal what going on in the inside,

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