Alicia's Cancer Blog

6 Months Post Treatment Update

This was suppose to be a post about how well I am doing and how positive all of my 6 month follow up tests have gone.  Exam and anoscope were great, CT scan was unremarkable, gyno exam was good and all the side effects are slowing getting better.  The surgeon removed my port!  "Accidents" are down to maybe one a week!  (less if I watch what I eat).  I even started back running for the past 2 weeks.  Mentally and emotionally starting to feel better. 

Then my gynocologists office called with pap results.  I insisted they give me one, although I had a hysterectomy years ago.  The test showed "low grade changes" and I am to come back in 6 months for a follow up... I understand this is typically not a concerning result and that its likely to go away on its own in the average person, but given what I have been through I know the risk must be higher.  I have so many questions, but the oncologist has not called me back.  

 I want to focus on the positive and get on with living, but am struggling and needed to vent!  I am wondering if any of you have had similar results?

Annabelle threw a punch at your cancer.
6 people sent you a hug.
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I have not...but I can tell you many of those types of results can be the result of the radiation you endured. Radiation is the gift that keeps on giving to be sure...it can cause such a myriad of issues to many different areas. Sounds like you are really doing well!
enjoy the weekend!
Sara
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I agree with Sara. Radiation is most likely the culprit. Sounds like you are doing wonderfully. Enjoy the long weekend!
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Vent away...we all understand the frustrations and concerns that pop up and stop you in your tracks. The worrying this disease causes is simply awful. My first instinct is radiation damage as was Sara’s and Lori’s...it makes the most sense. You’re doing great and I would stay focused on that! xo
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Thank you. the posts I read daily on here remind me how well I am doing and I am doing my best to focus on that.
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Wow, sorry your oncologist is not very responsive. I strongly suspect that we are talking about radiation damage, as other comments have suggested. Can you make an appointment with your oncologist? Or find a second doctor, maybe a gynecologic oncologist, for advice, if you continue to struggle...hugs
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Apparently they are taking the time to get the results and analyze them before calling me. Hopefully I will hear something today.
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I agree with everyone above.
Frustrating, that after treatment is common, because the treatment also causes these conditions in both the anal and vaginal pap, and needs time to heal...
so there is no clear answer for many of us; just time to heal.
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Was history of pelvic radiation provided on the pap requisition? I doubt it. Might request that a real pathologist re-read the pap, since they are often read as an assembly line. Also, get the REAL copy of the pap result lab slip. That could prove useful. It's more than likely the radiation effect, and very common, but we still need to keep an eye out. Hugs!
I don't know but doubtful. I expect my oncologist to get an accurate reading, but then again my docs continue to disappoint.. I thought that the radiation likely causes this type of result, but no one ever told me that.
Thank you!
I can understand your disappointment and concern over these results. Hopefully, when you go back in 6 months, things will have returned to normal. You aren't that far out from treatment, so it's very possible that this is just a result of the radiation. I'm glad you are otherwise doing well!
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Yes Alicia..agree with all previous comments. Still too early as radiation continues its assault. Try to hang in there I know this is worrisome esp.if you are as mental as I am.
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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

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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!”
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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!
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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
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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.
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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.
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Ask if shingles could be a possibility for a sore that doesn’t heal, or if sores keep reappearing in your anal area or buttocks. I’ve realized there needs to be more medical info on what to expect AFTER treatments. My primary doctor has been my go to doctor when I have concerns. I’m four months post treatment. I also have a support friend the Anal Cancer site.
or herpes (HSV) which like HPV can have no symptoms, and hide out, for years; I'm talking life time.
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!
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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
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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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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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