Feeling anxious for follow-up

PegSue

I am fairly new to this site.  Diagnosed with anal cancer 3/23/2017 from a biopsy done on a colonoscopy.  I found the mass myself after struggling for several weeks feeling like I had a "poop in the shoot" but couldn't actually poop.  In retrospect, I realize that I was struggling for several months with my bowel movements.  When the colonoscopy was done, in addition to the primary tumor just inside of the anus, there was a very large, smooth ball shaped mass very low in the rectum.  The biopsy from the larger mass came back "normal mucosa"  but that area lit up on the PET Scan around the edges.  The radiation oncologist thinks it's a lymph node that has grown so much that it is pressing in on the rectum.  There were at least 2 other much smaller lymph nodes that lit up in the iliac and mesorectal areas.  The larger mass was the size of a baseball and gave me major problems during radiation with my bowel movements.  The day after my last rad treatment, a radiologist drained 70cc of fluid out of the mass which helped open the rectum up a bit.  

 

My first follow-up with my medical oncologist was 2 months after treatment was complete.  She could no longer feel the primary tumor but she could still feel the obstructing mass so she has made arrangements for the colorectal surgeon to consult with me again when I go back for my first follow-up PET Scan.  My birthday is 9/19 which is the day of my PET Scan.  I see the rad onc that afternoon to get the results and then will see the med onc and surgeon the next day.  I will likely need to have surgery to remove that big lymph node as I am still struggling greatly with bowel movements!  An acquaintance of mine is a general surgeon and he suspects that they (Mayo) will most likely try to remove that lymph node intra-anally (sounds horrible) because of how low it is in the pelvis.  I was hoping for a quick and easy laproscopic surgery.  He also said a resection may be necessary.  

 

There are like 19 days to go for the PET Scan and the closer the day gets, the more my mind works to stress me out!  Has anyone had to have lymph nodes removed after treatment?  If so, what was your experience?

 

In addition to the anxiety, I am really struggling with the pain.  My hips, pelvis and thighs are the worst, but my whole body just aches some days.  I am 46 and feel like the treatment aged me 25 years!  Rad oncs don't tell you all of the wonder side effects and without sites like this for me to do research, I would be lost.  I did start the dilator use a few weeks ago - not because my rad onc suggested it, because of my research.  That has been horribly painful too but I refuse to let my cooch close up!

 

One more thing (sorry for the long post)...  Since my treatments ended, I have had a discharge that I have assumed is coming from the vagina.  I thought it was probably from the internal vaginal burning but I am still having it and I am more than 3 months post-treatment.  It is watery and yellow.  My med onc looked at the vaginal opening because there was a painful spot that looked like a small hole but she didn't think it looked like a fistula as when I beared down nothing came out of that spot.  Should I try to schedule an appointment with my OB/GYN to have him evaluate the discharge?  Of course I know that won't be a fun time either but I worry about the possibility of a fistula.

 

Thank you everyone for being open, sharing, and supporting each other!

 

mp327

PegSue

"Scaniety!"  I thik we've all experienced that.  I hope you will get the best possible news on your birthday!  Please keep us posted after your appointments with your medical team and you find out what comes next regarding the lymph node.  As for the discharge, I would definitely see the ob/gyn to get that checked out.

I wish you all the very best with your upcoming follow-ups. 

jajmom

Hi PegSue

Hello PegSue,

First off, your name has me singing "Peggy Sue, Peggy Sue...."  a very apt name because you are indeed very pretty (I hope I haven't offended you, you probably get that all the time)

I believe we are at similar stages in our recuperation as I was done with my treatments this May. I have posted previosly about hip, pelvic and lower back pain and feeling as though I am 99 yrs. old when I try to get up and move! Your experience sounds very familiar.

I did want to let you know that I have a thin vaginal discharge that just doesn't want to go away. I refuse to wear a pad because that area needs all the ventilation it can get. It is slightly discolored and can stain my underwear...needless to say I haven't worn my "Good" underwear for about 6 months, for more than one reason! As I posted recently regarding my GYN appt., everything was good (excepting the extreme discomfort) and both GYN and Radiation Dr. were not concerned about the discharge, chalking it up to damage from radiation causing it.

I know it's difficult not to be nervous about your upcoming scan, but this is how I try to look at it (with minimal success ...The scan will give you peace of mind if nothing shows up, or..there will be plenty of time to worry after your scan if something does show up. Try to be positive in knowing that you are ready to fight or do anything necessary to beat this thing.

To be honest (how sad is this) I am actually a bit envios of your scan, I never had one, PET that is. I also was told I need to wait a whole year before my next CT scan. (very scary to me) I had lypmh node involvement both mesorectal and extra-mesorectal. They did not remove or biopsy any nodes, just said that the radiation field was expanded to irradiate all affected nodes. I am afraid that somewhere lurking in my body there's something that has avoided my treatment. I had a good CT scan post treatment, but it was very vague in it's findings (no mention of several notable lesions/spots that were mentioned on first scan). I find that I am very loathe to bring these fears up because some would take it to mean that I am not thankful to still be here and that I can't accept my "good news" (scan) unconditionally. Believe me I am grateful, and I do have a positive outlook. I just feel like the more I know, the better prepared I can be.

I truly wish you well for this upcoming test.  And remember, being nervous won't change the results either way, but it will make you upset for the next 19 days! 

I will be thinking of you, especially on the 19th,

Chris

PegSue

jajmom said:

Hi PegSue

Hello PegSue,

First off, your name has me singing "Peggy Sue, Peggy Sue...."  a very apt name because you are indeed very pretty (I hope I haven't offended you, you probably get that all the time)

I believe we are at similar stages in our recuperation as I was done with my treatments this May. I have posted previosly about hip, pelvic and lower back pain and feeling as though I am 99 yrs. old when I try to get up and move! Your experience sounds very familiar.

I did want to let you know that I have a thin vaginal discharge that just doesn't want to go away. I refuse to wear a pad because that area needs all the ventilation it can get. It is slightly discolored and can stain my underwear...needless to say I haven't worn my "Good" underwear for about 6 months, for more than one reason! As I posted recently regarding my GYN appt., everything was good (excepting the extreme discomfort) and both GYN and Radiation Dr. were not concerned about the discharge, chalking it up to damage from radiation causing it.

I know it's difficult not to be nervous about your upcoming scan, but this is how I try to look at it (with minimal success ...The scan will give you peace of mind if nothing shows up, or..there will be plenty of time to worry after your scan if something does show up. Try to be positive in knowing that you are ready to fight or do anything necessary to beat this thing.

To be honest (how sad is this) I am actually a bit envios of your scan, I never had one, PET that is. I also was told I need to wait a whole year before my next CT scan. (very scary to me) I had lypmh node involvement both mesorectal and extra-mesorectal. They did not remove or biopsy any nodes, just said that the radiation field was expanded to irradiate all affected nodes. I am afraid that somewhere lurking in my body there's something that has avoided my treatment. I had a good CT scan post treatment, but it was very vague in it's findings (no mention of several notable lesions/spots that were mentioned on first scan). I find that I am very loathe to bring these fears up because some would take it to mean that I am not thankful to still be here and that I can't accept my "good news" (scan) unconditionally. Believe me I am grateful, and I do have a positive outlook. I just feel like the more I know, the better prepared I can be.

I truly wish you well for this upcoming test.  And remember, being nervous won't change the results either way, but it will make you upset for the next 19 days! 

I will be thinking of you, especially on the 19th,

Chris

Thank you Chris!

Thank you so much Chris.  I like your theory about scan anxiety.  I will have to try to remind myself of that when it creeps up on me.  

PegSue

mp327 said:

PegSue

"Scaniety!"  I thik we've all experienced that.  I hope you will get the best possible news on your birthday!  Please keep us posted after your appointments with your medical team and you find out what comes next regarding the lymph node.  As for the discharge, I would definitely see the ob/gyn to get that checked out.

I wish you all the very best with your upcoming follow-ups. 

I will definitely share my news when I get it!

Mollymaude

PegSue

There was a thread awhile ago about PET scans that can still light up in spots even if the cancer is gone. My doctors told me the actual digital rectal exam was more important because they could feel the difference between scar tissue and tumor. So don't panic if the PET still lights up in some spots. Also I know what you are talking about with the stiffness. Either get some physical therapy or google stretches and start stretching. When I went to PT she focused on priroformis stretches- that is a smaller pear shaped muscle in your butt area- for me that was the tightest. Radiation causes everything to scar and become less flexible. I know what you mean about feeling like this process aged you. I felt that way for a long time but lately (I finished treatment in Jan 2016) I've been feeling back to my age again. It does keep getting better. Hang in there!

mp327

Mollymaude

Radiation treatment causes inflammation and inflammation can cause hot spots on a PET scan.  That's what happened to me.  I still had an SUV level on my first post-treatment PET scan that really concerned me, but it was caused by inflammation.  Later scans showed that the tumor was gone.

PegSue

Sorry for the delay...

Hey everyone!  I am sorry for the long delay in reporting how my visit went in September.  After my insurance refused to cover the repeat PET Scan, I had a CT abdomen/pelvis done and the doctor told me that the large cystic mass / lymph node had shrunk down by about 70% and the anal tumor was gone and the two other lymph nodes had reduced in size by 30%.  I asked him what I could technically tell my friends and family and he said that I "have no signs of active or recurrent cancer".  I will go back every 3 months for repeat scans, digital rectal exams, and will start seeing Women's Health in December to help with the vaginal atrophy.  Got that news on my birthday so needless to say, it was a Great Birthday!  Thank you all for the prayers!

Mollymaude

PegSue

Congratulations!

PegSue

Mollymaude said:

PegSue

Congratulations!

Thank you!

Now I need to figure out how to get the energy to get myself physically healthy again.  

ACinNC

PegSue

How great that your mass has shrunk and tumor was gone.  Congratulations!

Sorry to hear that your insurance denied the PET scan.  My insurance denied mine after it was done post treatment but I am appealing the denial.  In my appeal I had to explain to them that I had a node at L5 that was essentially normal size on CT and MRI  but did light up on PET before treatment so how could I know that it was effectively radiated by size alone.  I am waiting for their answer but even if I knew ahead of time  that they would deny I still would have had it at my expense for the peace of mind.   My CT 3 months after treatment (done during an ER visit)  showed partial  reduction of tumor but the MRI done 2 weeks before didn't show any residual tumor so I'm not sure I trust any one test.  I know the PET  scan can give false positives (light up if inflammation is present) but I would rather know that there was something to have followed up than to be surprised later on. 

mp327

PegSue

That is wonderful news!

Wellzen

Wonderful news.

Wonderful news. Congratulations. I am also finding the fatigue to be quite frustrating