Anal cancer, part deux.

Ouch_Ouch_Ouch

I treated with radiation, 5FU, and mytomycin for anal cancer in 2014 for stage 3b. In April, I had a routine CT scan that showed metastisis; a PET scan corroborated the finding. The local oncologist wanted me to have a colonoscopy, which I did. Besides the radiation damage to my anal canal, everything was perfectly fine. Therefore, since it's been 4 years, the onc said that I didn't have cancer after all - the scans were just picking up radiation scar tissue.

So, I jumped ship. My case was presented at Memorial Sloan Kettering Cancer Center. The radiation oncologist told me that I DO have cncer in a lymph node north of the area that was irradiated in 2014. Apparently, the ca had spread before or during treatment to that node, but wasn't detected. The chemo kept it tamped down until it began flaring back up. So, technically, I don't have cancer again, but I still have cancer.

He said that this wasn't common, but he has seen it happen before. He is so sure that I have anal SCC in that node that biopsy is unnecessary.

I'm to get 27 radiation treatments at 5 days/week. I have to see a medical oncologist to decide what chemo meds I'll take. I'm getting a more complete CT scan tomorrow; simulation next Wednesday; then the radiation will start in about 2-1/2 weeks. 

Since this node is higher up than the ones treated in 2014 and deeper inside, supposedly I won't get the awful skin burns and the whole thing will be easier. I hope so!

I'm not afraid of the cancer, but of going through the treatment again.

>_<

mp327

Ouch

I'm so very sorry you have to go through this treatment again, but glad to know that it is an option for you, due to the node being out of the previous treatment area.  I hope your scan shows the cancer to be contained in just this one node with no spread to other organs.  Please let us know what you find out after the scan.  I am thinking all good thoughts for you!

judyv3

So sorry you are going through this AGAIN.

I remember you and I were diagnosed at about the same time.  I completed treatment in January of 2014.  I cannot imagine being told that I need radiation again.  However, I have just been diagnosed with uterine cancer, I can't have radiation, of course because it is the same area.  This is not a metastasis this is cancer #2.  I will be thinking of you and checking in on your progress.  

I'm taking Progesterone to suppress the hormones feeding the cancer and if that's working I may avoid surgery which all docs are a little afraid of because of the damage left from the ac treatment.  Just trying to take one step at a time.

Stay strong!

Judy

mp327

judyv3 said:

So sorry you are going through this AGAIN.

I remember you and I were diagnosed at about the same time.  I completed treatment in January of 2014.  I cannot imagine being told that I need radiation again.  However, I have just been diagnosed with uterine cancer, I can't have radiation, of course because it is the same area.  This is not a metastasis this is cancer #2.  I will be thinking of you and checking in on your progress.  

I'm taking Progesterone to suppress the hormones feeding the cancer and if that's working I may avoid surgery which all docs are a little afraid of because of the damage left from the ac treatment.  Just trying to take one step at a time.

Stay strong!

Judy

judyv3

I'm so sorry to hear that you have another cancer to deal with.  I hope the hormone treatment will be successful.  Please keep us posted as to how things are going for you.  I send you my best wishes for successful treatment.

ACinNC

Ouch and Judy

Ouch,

That is tough news to find out you had a node that flared up after 4 years.  It's disappointing that the original PET scan (assuming you had one at diagnosis) didn't pick it up.  But hopefully you won't have the nasty effects from radiation to your skin.  I had a node at L4 radiated during treatment and there wasn't any skin effects to that area.  

Judy,

Do your docs think your uterine cancer is related to having radiation which in itself leaves us at higher risk of developing cancer? If you end up needing surgery and your surgeon doesn't have experience with radiated tissue, try to find one who does.  When I was contemplating having corrective surgery for a rectovaginal fistula, after I consulted with a colorectal surgeon he had me talk with a plastic surgeon who has extensive experience with radiated tissue so if I had gone ahead with surgery I felt like I would have been in the best hands possible.

judyv3

ACinNC said:

Ouch and Judy

Ouch,

That is tough news to find out you had a node that flared up after 4 years.  It's disappointing that the original PET scan (assuming you had one at diagnosis) didn't pick it up.  But hopefully you won't have the nasty effects from radiation to your skin.  I had a node at L4 radiated during treatment and there wasn't any skin effects to that area.  

Judy,

Do your docs think your uterine cancer is related to having radiation which in itself leaves us at higher risk of developing cancer? If you end up needing surgery and your surgeon doesn't have experience with radiated tissue, try to find one who does.  When I was contemplating having corrective surgery for a rectovaginal fistula, after I consulted with a colorectal surgeon he had me talk with a plastic surgeon who has extensive experience with radiated tissue so if I had gone ahead with surgery I felt like I would have been in the best hands possible.

I wish I knew more

I feel like this new cancer is from the treatment for the anal cancer.  I mentioned it to the doc, he did not confirm or deny.  Truthfully, once he started talking about not doing surgery, I was so excited (because I am terrified of healing from the surgery) - I didn't ask enough questions.  He pointed out that surgery could leave me incontinent.  That terrifies me, but I know that I would come to terms with ostomies if necessary to life.  

For my appointment on the 8th I have many questions - I believe I will have to have surgery because I am still bleeding which to me means the progesterone is not working.  I do not know specifically if this doctor has done surgery on radiated areas - he is the only guy in town so one would think he's come across it, but I will ask.  He was going to contact my colorectal doc, my radiation oncologist, etc. from before, but we'll see if that actually happened.  

More questions than answers. 

Ohmy

God bless you Ouch and Judy. 

God bless you Ouch and Judy.  Thank you for sharing your experiences with us.  A good reminder to always get a second opinion when in doubt.  

ACinNC

judyv3 said:

I wish I knew more

I feel like this new cancer is from the treatment for the anal cancer.  I mentioned it to the doc, he did not confirm or deny.  Truthfully, once he started talking about not doing surgery, I was so excited (because I am terrified of healing from the surgery) - I didn't ask enough questions.  He pointed out that surgery could leave me incontinent.  That terrifies me, but I know that I would come to terms with ostomies if necessary to life.  

For my appointment on the 8th I have many questions - I believe I will have to have surgery because I am still bleeding which to me means the progesterone is not working.  I do not know specifically if this doctor has done surgery on radiated areas - he is the only guy in town so one would think he's come across it, but I will ask.  He was going to contact my colorectal doc, my radiation oncologist, etc. from before, but we'll see if that actually happened.  

More questions than answers. 

Incontinent

You mention that surgery might leave you with incontinence.  I'm puzzled because I wonder how surgery for uterine cancer would create that problem.  The doctor would have to explain that really well to me if I were in your shoes.  Do you have the ability to go outside your town for another opinion?  If you have to use this doctor make him tell you how many surgeries he has performed on patients with radiation damage and how he manages any problems if they occur.  

I'm sorry you are still bleeding.  In the event you ever do have an ostomy, don't despair.  I thought I would never accept mine but as time passes I have comes to terms with it.  I try to look at the positives of having one.  And there are positives.

Ouch_Ouch_Ouch

judyv3 said:

So sorry you are going through this AGAIN.

I remember you and I were diagnosed at about the same time.  I completed treatment in January of 2014.  I cannot imagine being told that I need radiation again.  However, I have just been diagnosed with uterine cancer, I can't have radiation, of course because it is the same area.  This is not a metastasis this is cancer #2.  I will be thinking of you and checking in on your progress.  

I'm taking Progesterone to suppress the hormones feeding the cancer and if that's working I may avoid surgery which all docs are a little afraid of because of the damage left from the ac treatment.  Just trying to take one step at a time.

Stay strong!

Judy

Oh, no!

I am sorry to hear this. Is the cancer still localized? If so, can it be removed via hysterectomy? I will keep my fingers tightly crossed for you.

Ouch_Ouch_Ouch

judyv3 said:

I wish I knew more

I feel like this new cancer is from the treatment for the anal cancer.  I mentioned it to the doc, he did not confirm or deny.  Truthfully, once he started talking about not doing surgery, I was so excited (because I am terrified of healing from the surgery) - I didn't ask enough questions.  He pointed out that surgery could leave me incontinent.  That terrifies me, but I know that I would come to terms with ostomies if necessary to life.  

For my appointment on the 8th I have many questions - I believe I will have to have surgery because I am still bleeding which to me means the progesterone is not working.  I do not know specifically if this doctor has done surgery on radiated areas - he is the only guy in town so one would think he's come across it, but I will ask.  He was going to contact my colorectal doc, my radiation oncologist, etc. from before, but we'll see if that actually happened.  

More questions than answers. 

So sorry, judyv3.

Have you considered seeing a gynecological oncologist? At least for information gathering?

I am already incontinent of urine from the radiation damage of 2014. I am also incontinent of stool whenever it gets looser. The looser, the more incontinent. I don't think my inner sphincter is working at all. I don't leave the house without a tote bag containing extra clothes and washcloths. I take 3 Immodiums and then don't eat or drink all day until I get home. Not good for the kidneys, but there's less stress on the clothing.

Ouch_Ouch_Ouch

Ouch_Ouch_Ouch said:

So sorry, judyv3.

Have you considered seeing a gynecological oncologist? At least for information gathering?

I am already incontinent of urine from the radiation damage of 2014. I am also incontinent of stool whenever it gets looser. The looser, the more incontinent. I don't think my inner sphincter is working at all. I don't leave the house without a tote bag containing extra clothes and washcloths. I take 3 Immodiums and then don't eat or drink all day until I get home. Not good for the kidneys, but there's less stress on the clothing.

PS:

Memorial Sloan Kettering Cancer Center has an "Anorectal Diagnostic Center" that supposedly will preserve/restore function. I'm going to check with them to see if there's something they can do for me - https://www.mskcc.org/cancer-care/types/colon/anorectal-diagnostic

judyv3

ACinNC said:

Incontinent

You mention that surgery might leave you with incontinence.  I'm puzzled because I wonder how surgery for uterine cancer would create that problem.  The doctor would have to explain that really well to me if I were in your shoes.  Do you have the ability to go outside your town for another opinion?  If you have to use this doctor make him tell you how many surgeries he has performed on patients with radiation damage and how he manages any problems if they occur.  

I'm sorry you are still bleeding.  In the event you ever do have an ostomy, don't despair.  I thought I would never accept mine but as time passes I have comes to terms with it.  I try to look at the positives of having one.  And there are positives.

Surgery/Incontinence

The gynecologic oncologist that I saw explained that since I already have radiation damage to those areas, going in and disturbing it can cause things to "misfire" resulting in continence issues.  The issue, of course, is the radiated tissue does not heal.  He said if he did surgery he would likely only do it robotically because those incisions are above where the main radiation damage is.  

And if an ostomy becomes necessary, I feel like I will be able to handle it.  And I will seek a 2nd opinion as soon as we have settled on whether I am having surgery or not.  Typically, you get the second opinion after the surgery.  I might need a couple of them.  I would have no choice but to go out of town for a second opinion because this gynecologic oncologist is the only one within the three closest counties (I'm in FL).  

There's so much to consider too - I have medical benefits through my job but if I can't work, I don't get paid (I'm an aide to a wheelchair bound high schooler).  I'm scared to lose my job.  One step at a time.

Judy

 

judyv3

Ouch_Ouch_Ouch said:

So sorry, judyv3.

Have you considered seeing a gynecological oncologist? At least for information gathering?

I am already incontinent of urine from the radiation damage of 2014. I am also incontinent of stool whenever it gets looser. The looser, the more incontinent. I don't think my inner sphincter is working at all. I don't leave the house without a tote bag containing extra clothes and washcloths. I take 3 Immodiums and then don't eat or drink all day until I get home. Not good for the kidneys, but there's less stress on the clothing.

Gynecologic Oncologist

I went to a gynecologic oncologist.  If I didn't have radiation damage, I'd have a hysterectomy and probably be fine.  It's just complicated and things move too slowly.  I have the summer off and had hoped that I could have the surgery while I was off and go back to work and be done!  Haha!  Things do not really work that way, do they?

I am lucky in that incontinence is not currently an issue.  I occasionally get the runs but typically have the opposite problem.  But I do always carry a change of clothes and a bag I refer to as my "potty bag" with soft TP, Aquaphor and wipes.  The "new normal".  

I'm thinking of you and sending positive thoughts.

Judy