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Reaching out to this site again

Clovergirl
Posts: 47
Joined: Dec 2012

I still "lurk" but I kinda stayed off of this site while I've been going through this process.  I was diagnosed December 14th and will finally be starting treatment Monday February 25. (I think).  I started out with a colonoscopy and then the numerous scans and tests.  It wasn't until the PET Scan that anything showed up.  I was just getting ready to start treatment when the results from the PET scan came back with all sorts of surprises.  I had surgery Friday, February 1st.  I had robotic/laparoscopy surgery.  A tumor the size of an egg was removed from my lymph area along with several nodes around for good measure (this was not groin lymph area. much higher toward abdomen)  I also had a biopsy in the right vaginal wall. Because of the location of the tumor in the lymph nodes they thought I could have perhaps had a second kind of cancer but the pathology came back that it is all the same squamous anal cancer.  I'm doing really well from the surgery with the exception of some nerve issues in my left thigh.  I was told 4 weeks to recover but I went back to work yesterday after one week.  I have a follow up with the GYN ONC Surgeon next Wednesday, but today I had another consultation with my RAD ONC.  I had not seen him since my original consult prior to the results of the PET Scan.  I really like him.  He is so thorough and aggressive in his actions.  He actually made the appt for today.  His office called me before I had surgery to tell me that he was slipping in his appt even before my surgeon follow up.  He is ready to go with the treatment.  I had a somewhat painful pelvic exam and yet ANOTHER rectal exam. He is really concentrating on that right vaginal area.  What I found out today is that the tumor that was biopsied there is sitting in the vaginal wall pushing through to the anal canal or vice versa.  I realize I'm not using medical terminology here but you get the picture. Soooooo, while he is doing his pelvic exam and I'm up in the stirrups he says "how long has this little thing been here".  I'm like "what little thing?"  So he puts my hand to this little bump.  Really little like a pimple. smaller than a pea.  It was hard like a pebble.  Told him I never really noticed it.  It's  in the leg crease, my underwear actually covers it. It does not hurt at all.  In fact I had to lay there while he called a pathology team to come and needle biopsy it. I did not have any pain whatsoever with the biopsy.  The RAD ONC said he is not overlooking anything because it all matters when he is mapping out his radiation plan.  Before I left he did tell me that I will pretty much be having full pelvic radiation as well as some higher where that large tumor was and where there is some small light ups on scan.  He went over all the side effects and instead of being shocked and dismayed I just kept nodding my head.  I finally chimed in and said I was on this site and had obtained ALOT of information.  Has anyone had this cancer so "splattered" around?  I can't believe all these little areas it keeps popping up.  I really dread the start of treatment and welcome it at the same time.  I'm ready to get going and try to knock it out!!!!!! Thanks for any input.

mp327's picture
mp327
Posts: 2875
Joined: Jan 2010

I'm glad you came back here to update us on your situation.  I'm sorry to hear that the cancer was in your lymph nodes.  Hopefully, since the tumor along with several nodes was removed, your prognosis is excellent.  It is a little concerning that your cancer seems to be present in several locations, but your rad onc sounds on top of things and will come up with a radiation plan that will include everything.  I know how you are feeling regarding the start of treatment--both dread and relief.  I felt much better when I finally got started, as I felt like I was finally fighting back against the disease.  I wish you all the best and hope that you will come here often to tell us how things are going.  You will get through this, both the good days and the bad.  Stay positive and know that you have all of us cheering for you.

Phoebesnow
Posts: 447
Joined: Apr 2011

Good luck with your tx.  I hope everything goes well for you.  Keep in touch regarding your progress.  

Dog Girl
Posts: 100
Joined: Sep 2010

Clovergirl:  While I didn't have lymph node involvement, my 4 cm tumor was like a lower case b in that the "stem" was growing upwards behind the anal canal.  This was not found on the CT, but subsequently on the PET.  I know they targeted that stem with rad and then the big guns, as Martha says, on the tumor itself.  I actually think that the rad onc. is probably most important.  I know I didn't want my med onc. to do a DRE on me (big man with big hands/fingers) which he ended up doing once, but fortunately my colorectal dr. and rad onc. are both small men with small fingers. :)  I wanted my rad onc. to spend as much time there as necessary because I wanted him to get a real good fix on where it was so he could direct the rays the best.  It was 6 weeks between my initial dr visit and start of my treatment, so I too know what you mean about the let's get it going/dread conflicting emotions.  Hopefully you've read a lot of the posts and have a good idea of what to expect and possible side effects and tips on how to deal with them.  Do ask you dr. if you should have a full bladder going into rad tx and also if you should be using a dialator while receiving tx.  I think that is recommended at MD Anderson now, but I'll let some of the ones that go there chime in on that.  Good luck as you start tx and you should be on the mend once spring arrives.  Come back as often as needed to this site; you know there are no subjects surrounding this cancer that are off limits.

Clovergirl
Posts: 47
Joined: Dec 2012

My RAD ONC did mention the dialator today but I forgot to ask him when he wants me to start using it. Will ask him next week. I see the med onc Monday. Hopefully he won't do a rectal exam. I've had so many but I agree with you I'm all for the rad onc getting the best picture he can. I have a dentist appointment tomorrow. If he says he's doing a rectal exam I'm leaving! LOL

Clovergirl
Posts: 47
Joined: Dec 2012

My RAD ONC did mention the dialator today but I forgot to ask him when he wants me to start using it. Will ask him next week. I see the med onc Monday. Hopefully he won't do a rectal exam. I've had so many but I agree with you I'm all for the rad onc getting the best picture he can. I have a dentist appointment tomorrow. If he says he's doing a rectal exam I'm leaving! LOL

RoseC's picture
RoseC
Posts: 503
Joined: Jun 2011

Smile

Watch out for those dentists!

Hope everything turns out ok.

eihtak
Posts: 826
Joined: Oct 2011

So funny, I went to the detist today for a cleaning and they took my height, weight, and BP. I have never had that before! I think its a good idea but was surprised. A DRE would be .... well???? lol

Anyhow, you sound well informed and prepared (if thats possible)....keep posting with questions and concerns as they arise, hopefully someone will have suggestions to help!

Will keep you in my prayers for smooth treatment and recovery!

torrance
Posts: 118
Joined: Jan 2012

I too, understand the relief or starting treatment and yet the dread of it as well.  I think it is so important that you have a knowledgeable rad onc that you like.  Sounds like you are in good hands to address this monster.  Please keep us posted and let us know how we can support you in your fight.

 

Joanne

Dog Girl
Posts: 100
Joined: Sep 2010

Clovergirl,  Funny you should mention the dentist.  Since the tx for anal ca is relatively short, my diagnoses and tx fell between my twice/yr dental cleanings.  Well I've never had my BP checked at the dentist office, etc.. (although one dentist did look under tongues for signs of problems), but they usually ask if there have been any medical issues in the ensuing time.  My dentist was a jokester, so I told him I had been treated for anal cancer and that he was lucky; usually when I saw someone walk into an exam room with a white coat on I dropped my drawers.  He laughed and said "That's the wrong end for me!".

Marynb
Posts: 1134
Joined: Aug 2012

I hope that all of your treatments go well. I am glad you are getting a good teeth cleaning prior to treatment. That will prevent any issues with mouth sores. I may have mentioned before that when I had the first diagnostic scans, there appeared to be distant metastases. The initial diagnosis was more dire. However, they sent the various biopsies to the pathology lab to see if the malignant cells matched. As it turned out, they did not. So, believe it or not, having been diagnosed with 2 separate cancers was, in some ways, a blessing. Have they biopsied all of the distant malignancies? It required surgery, but was well worth it.

Hang in there. You can do this!

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