Why can't doctors stage my cancer?

Kim Gaia
Kim Gaia Member Posts: 73
in Anal Cancer #1

Most people on this forum, when describing their diagnosis, also are able to include stage. I was not given this information. I asked my biopsy surgeon repeatedly. And even though he had the MRI report (which I now have too), he kept saying not possible to stage it. I don’t understand this.

 

Maybe the Chemo Oncologist and Radiation Oncologist I will be seeing in a couple of weeks will be able to stage it for me.

 

But for now, I would like to share the biopsy report and pelvic MRI report in case members here have any insights. (NOTE: All mention of bulky lymph nodes most likely have nothing to do with this cancer and are not in fact metastatic. I also have CLL, Chronic Lymphocytic Leukemia, and bulky nodes are normal, especially when I go off my medication controlling it, as I had to for the biopsy surgery when this MRI was done. Lymph nodes are now back to normal size. MRI doctor did not seem to be aware of my CLL.)

 

Anal lesion biopsy: “Diagnosis: Invasive moderately differentiated squamous cell carcinoma”

 

MRI Report:

 

Findings: There is a mass protruding out of the anal verge which measures 15 mm transverse. However, this ascends the anal canal anteriorly to involve the distal rectum approximately 10-12 mm above the puborectalis sling. There is clearly invasion of the internal and external sphincter and possible involvement and/or adherence to the posterior wall of the vagina on the left.

 

At the level of the distal rectum the mass is located anteriorly. I cannot exclude the possibility of extension beyond the rectal wall at the 1:00 position to involve the posterior wall of the vagina.

 

In total, the mass measures approximately 4.7 cm in length and up to 2 cm in diameter.

 

Bulky lymph nodes are seen within the inguinal regions bilaterally measuring up to 14 mm in short axis and presumably metastatic in nature. However, there is also bulky lymphadenopathy along the iliac chains bilaterally and within the mesentery.

 

Impression: Mass, likely arising from the anal canal as described with extension above the dentate line to involve the distal rectum. There is possible involvement of the posterior vaginal wall on the left at the level of the distal rectum, and there appears to be extension beyond the external sphincter anteriorly within the anal canal, possibly to involve the posterior vaginal wall more inferiorly.

 

Quite bulky inguinal retroperitoneal and mesenteric lymphadenopathy which is believed metastatic. <END OF MRI REPORT>

 

Another Question from me: With this level of involvement and "invasion" described in MRI report, it is hard for me to see how Chemo-Radiation would leave me with a functioning bowel or vagina. In which case, would it make more sense to go straight to surgery (lifetime colostomy), since I may likely end up with that anyway... and that way skip the damage Chemo-Radiation will do to my body? I believe another member here also asked this "Straight to Surgery" question on another thread. For some reason, that never seems to be done...

 

Thanks for any insights,

kim

Comments

  • Kim Gaia
    Kim Gaia Member Posts: 73
    edited March 2018 #2
    mp327 said:

    kim

    You need to have a frank discussion with all of your doctors as to your options.  There are many people who were diagnosed at Stage 3 cancer who have had successful chemo/radiation treatment.  You need for your doctors to tell you what stage you are and their opinions on what treatment is best for you.  I will repeat what I said to you earlier in another thread--I underwent chemo/rad in 2008 and have NO long-term side effects that have kept me from living a normal life.  Going straight to surgery, as you say, will leave you no other options on the table--once you go there, you cannot go back.  Talk to your doctors.  None of us here are physicians and do not have the details of your case like your doctors do.  One thing I would definitely do if I was leaning towards colostomy is talk to someone who is living with one.  For some people it's an easy adjustment, but for others it is not.  There are many things to consider.

    Thank you for the reply.

    Thank you for the reply. I am of course talking to my doctors about this. That goes without saying. Was also hoping to collect the wisdom and insights of the group on this in addition to what doctors advise me, not in place of talking to doctors. It's the way I work whenever I am gathering information to make all of my own health care decisions. I cast a wide net. That's just me. :)

  • mp327
    mp327 Member Posts: 4,440 Member
    #3
    kim

    You need to have a frank discussion with all of your doctors as to your options.  There are many people who were diagnosed at Stage 3 cancer who have had successful chemo/radiation treatment.  You need for your doctors to tell you what stage you are and their opinions on what treatment is best for you.  I will repeat what I said to you earlier in another thread--I underwent chemo/rad in 2008 and have NO long-term side effects that have kept me from living a normal life.  Going straight to surgery, as you say, will leave you no other options on the table--once you go there, you cannot go back.  Talk to your doctors.  None of us here are physicians and do not have the details of your case like your doctors do.  One thing I would definitely do if I was leaning towards colostomy is talk to someone who is living with one.  For some people it's an easy adjustment, but for others it is not.  There are many things to consider.

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited March 2018 #4
    Kim

     I would think the surgeon doesn't want to hazard a guess as to stage because of your lymphadenopathy from the leukemia. Anal cancer is also rare so maybe he doesn't want to be the one to say what stage this is and is going to leave it to the oncologists. I suspect he just didn't know because without lymph node biopsy in your case it sound like it would be hard to tell what's leukemia and what could be spread of anal cancer to nodes. Anal cancer almost always goes to the inguinal nodes first. I would bet they will plan for radiation to include those nodes to be on the safe side. The good news is that it is not showing up in your liver or your lung, which is the next place it usually goes. Waiting is the hardest part isn't it? 

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #5
    Kim

    One reason not to do surgery first will be that since tumor seems to involve so many other pelvic structures and is in the sphincter if they shrink it first with chemo and radiation, even if you have to have surgery there will be much less "collateral damage" than if you went  to surgery first. I think most of us are middle aged or older and remember the days when they seemed to always cut  the cancer out with surgery first and then did chemo and radiation. Now a lot of times that's not the case anymore. 

  • Kim Gaia
    Kim Gaia Member Posts: 73
    #6
    Mollymaude said:

    Kim

    One reason not to do surgery first will be that since tumor seems to involve so many other pelvic structures and is in the sphincter if they shrink it first with chemo and radiation, even if you have to have surgery there will be much less "collateral damage" than if you went  to surgery first. I think most of us are middle aged or older and remember the days when they seemed to always cut  the cancer out with surgery first and then did chemo and radiation. Now a lot of times that's not the case anymore. 

    Good point about shrinking

    Good point about shrinking the thing first with chemoradiation before even considering surgery. I have not actually had imaging done of lungs or liver yet, so we don't know what that may show. I think the oncologists will be ordering that soon. How has your own recovery from chemo-radiation been, Mollymaude? Substantial change to quality of life as a result fo treatment? Or things more or less back to normal with enough time?

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #7
    Kim

    Life has a new "normal". Most people looking at me would think I'm completely back to precancer treatment and I do feel good. However, I continue to have GI issues- diarrhea at times, can't eat fatty or greasy food. i had to slowly work my way back to fruits and veggies. When I have to go I don't have much time to get to the bathroom. I've had a couple of accidents thinking I could hold it. This does create anxiety! I also have become lactose intolerant.

    Radiation fried my ovaries so I went into menopause symptoms with hot flashes- this has been taken care of by hormone replacement.

    Radiation also decreased the bone density in my hips so I try to keep up on my walking (weight bearing exercise) and take calcium and vitamin D. If you haven't ever gotten your vit D level checked, that would be a good thing to do. I read that half of people with GI cancers have low vitamin D, and that was the case with me.

    I have more problems with stress incontinence as well. 

    I have also had vaginal stenosis from the radiation and that's no fun. I tried pelvic PT for this but it was just too intrusive and, for lack of a better word, yucky for me. Therapist has to have their finger in both your vagina and your rectum. Therapy is to break down scar tissue and try to get it more normal and also have you do legal type exercises. I dropped out. It was recommended that I use dilators to keep things open in the vagina. Instead of that I just insert a tampon lubed with coconut oil about once a week to get the walls of vagina that have adhesed together open again. This usually causes bleeding but not much.  

    With all that said, again, I don't look any different to people I know, I have good energy (finally!), and I'm very glad to be alive. I will be taking my daughter to Italy for her high school graduation present and my only concern is finding bathrooms! But I'm not going to stay home because of my anxiety about my bowels. 

    I hope all this doesn't seem overwhelming at the outset of treatment. Just a summary of how things are 2 years later (for me, everyone is different).

  • Kim Gaia
    Kim Gaia Member Posts: 73
    #8
    Mollymaude said:

    Kim

    Life has a new "normal". Most people looking at me would think I'm completely back to precancer treatment and I do feel good. However, I continue to have GI issues- diarrhea at times, can't eat fatty or greasy food. i had to slowly work my way back to fruits and veggies. When I have to go I don't have much time to get to the bathroom. I've had a couple of accidents thinking I could hold it. This does create anxiety! I also have become lactose intolerant.

    Radiation fried my ovaries so I went into menopause symptoms with hot flashes- this has been taken care of by hormone replacement.

    Radiation also decreased the bone density in my hips so I try to keep up on my walking (weight bearing exercise) and take calcium and vitamin D. If you haven't ever gotten your vit D level checked, that would be a good thing to do. I read that half of people with GI cancers have low vitamin D, and that was the case with me.

    I have more problems with stress incontinence as well. 

    I have also had vaginal stenosis from the radiation and that's no fun. I tried pelvic PT for this but it was just too intrusive and, for lack of a better word, yucky for me. Therapist has to have their finger in both your vagina and your rectum. Therapy is to break down scar tissue and try to get it more normal and also have you do legal type exercises. I dropped out. It was recommended that I use dilators to keep things open in the vagina. Instead of that I just insert a tampon lubed with coconut oil about once a week to get the walls of vagina that have adhesed together open again. This usually causes bleeding but not much.  

    With all that said, again, I don't look any different to people I know, I have good energy (finally!), and I'm very glad to be alive. I will be taking my daughter to Italy for her high school graduation present and my only concern is finding bathrooms! But I'm not going to stay home because of my anxiety about my bowels. 

    I hope all this doesn't seem overwhelming at the outset of treatment. Just a summary of how things are 2 years later (for me, everyone is different).

    Thank you for the honest

    Thank you for the honest account Mollymaude. It helps me to know thses things. Wonderful that you are going to Italy with your daughter!

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    #9
    Kim

    You're welcome! I hope treatment goes by fast for you so you can get back to living your life!

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