Overwhelmed

Wisteria83

I'm not sure where to begin.  I'm newly diagnosed, one week yesterday that I got the news.  Yesterday I saw the Radiologist.  He was pretty awesome and explained things very clearly.  The entire staff at the cancer center was really nice and helpful.  At this point He staged me at T 1 or 2, N-0, M-0.  On Tuesday I have a  PET scan, Wednesday a pelvic MRI, Thursday I'll see the Oncologist and Friday back to the Radiologist to plan treatment.  He said the staging could change based on what the tests show.

They are calling it Anal/Rectal cancer because of where the tumor is.  Is that weird?  I didn't know it could be both so I'm a bit confused about that.  The surgeon who took the biopsies said it was a strange presentation that she hadn't seen before.

I've been reading the posts here for the last few days, not knowing if this was the right forum for me.  I guess it is since I'll be getting the Nigro Protocol which is chemo/radiation for anal cancer.

I have barely slept for the past week, feeling like I'm sleepwalking through a nightmare.  I'm scared.  I'm a 55 year old woman, married with kids and grandkids.  My husband is wonderfully supportive so I know I'm really fortunate in that regard.  I think my biggest fear is pain and how I'll handle it.  I have Fibromyalgia and chronic pain from degenerative disk disease to begin with.  I've been in pain management for years since my second neck surgery.  I've had two fusions there about 8 years apart and very limited range of motion.  I also have two herniated disks in my lower back and sciatica.  I've had three carpal tunnel surgeries on my right hand and two on my left, and I need those done again because it's been back for years but I've just postponed it.  I'm petite.  5'2, and 85 lbs.  I've lost around 25 lbs. in the last year because I've had no appetite to speak of.  It's made me wonder if I could have had this cancer for longer than I've had symptoms.  No way to know I guess.

Can anyone tell me if this is a slow or quick growing cancer?  I asked the surgeon if I had HPV and she said she saw no indication of that.  I asked what could have caused it and her answer was, "Just bad luck."  

The Dr. told me yesterday that he wants me to try to gain some weight before we begin treatment.  He said to eat anything and everything as much as I want to.  The problem is that I really don't feel hungry and I'm afraid that it will get worse as treatment goes along.  I really cannot afford to lose any more weight.

Also, since I'm a pain management patient, I have a contract with them about not getting narcotics from any other doctors.  I use a fentanyl patch for pain control and have for years.  I'm going to need to tell them about my new diagnosis and figure out who is going to be in charge of my pain control now.  

I've been reading your posts here and you've all talked about burns from the radiation.  That terrifies me because I am extremely sensitive to burns.  Normal people can get a burn and run it under cold water then forget about it.  For me, I have to have an ice bag on it for hours after because whenever the air hits a burn, no matter how minor, it's excruciating and I cannot function.  I don't mean to sound like a whiney baby but it's just the way my body responds.

I'm sorry this turned into a novel...that wasn't my intention.  Thank you all in advance for any advice you might share or help you can offer.

 

 

mp327

Wisteria83

Please don't apologize for the length of your introduction.  Giving us your full story will help us help you.  I'm sorry that your diagnosis has brought you here, but the support here is great. 

I was diagnosed with anal cancer in 2008, very similar to yours--on the fence between stage 1 and 2 with no nodal involvement or metastases.  I had 30 radiation treatments and 2 rounds of chemo (5FU and Mitomycin).  Despite some manageable long-term side effects, I am doing quite well.  Like you, at the time of diagnosis, my weight had dropped for no known reason.  I now believe it was because of the cancer.  Of course, once I began treatment and got far enough into it to begin having side effects, my appetite tanked and I lost even more weight.  My medical oncologist became very concerned and threatened to put me in the hospital for nutrition if I lost any more weight.  I literally had to force myself to eat.  So, my advice to you echoes what your doctor has said--try to gain some weight now, prior to treatment.

I would certainly want an explanation from your doctors as to why they are calling it Anal/Rectal cancer.  Anal cancer is typically squamous cell cancer, whereas, rectal cancer is typically adenocarcinoma.  This means the cell types are different and are treated differently.  I had an experience with a hospital tech who kept referring to my cancer as "rectal."  I finally had to correct them and explain to them that anal and rectal were two different things and referred to two different parts of the anatomy.  Geez!

I cannot really answer your question with any authority about how fast this cancer grows.  However, in my own experience, I believe it was present for years prior to my diagnosis.  The rate at which it grows could depend on the person and any other compromising factors.  In your case, it's possible that your immune system was compromised by your other health issues, but I just don't know.

As for pain management during your treatment, I can see your dilemma, since you are already on pain management.  I do know that some people have used Fetanyl patches for pain control during this treatment, so perhaps that will be what your doctors will continue.  Obviously, all of your doctors will need to confer about this.  I will tell you that my burns were quite painful, so I hope you can get something that will be effective in controlling your pain.  I was guilty of not taking enough of the prescribed medication and suffered needlessly, IMO.  If I was doing it over, I would have taken whatever I needed to to avoid that kind of pain.

This will be a challenging journey, albeit relatively short, as compared to treatment for other types of cancer.  So many of us have been there, done that, and are still here to talk about it.  You will join our ranks as a survivor when this is over.  We are here to help you get through it, so please come here and let us know what you need from us.  As good as doctors are about knowing how to get rid of the cancer, some of them are very little help when it comes to helping us get through treatment and deal with some of the possible side effects.

So that you are well-informed about this disease and the treatment, I urge you to go the website for the National Comprehensive Cancer Network (NCCN) and learn as much as you can about it.  You'll need to complete a brief registration form online, then you'll have access to the latest treatment guidelines, which will help you when discussing your treatment with your doctors.  The website is http://www.NCCN.org

I wish you all the very best and hope you'll let us be your virtual support as you begin this journey.  You will get through this!

Martha

eihtak

Wisteria83...

I am so sorry for the situation you are in, but glad you have found us and hope this forum can be of some help to you. This dx is very overwhelming and the first several appointments in getting treatment plans in place only seem to make that worse! Know that at least you are not alone and we are here to help so please come back often. 

I also recommend registering on the NCCN website. You will have access to guidelines and protocall treatment recommendations to your cancer based on stage. Keep in mind that doctors need to take personal situations into consideration and customize treatment, but should be following these guidelines.

As I'm sure you have read, the pain from radiation can be intense. I would address this ahead of time with your pain management team and radiation doctors and pray they are able to work up a plan to stay on top of that rather than trying to treat it once it hits. There are several ointments available and some people find great relief from using these as well. As Martha said, please try to eat eat eat now, before treatment just to get yourself as prepared as possible for potential weight loss. I did have some complications and ended up in the hospital on TPN (a nutritional supplement administered through my port) It wasn't awful, but could have been avoided had I forced myself to eat better.

I will keep you in my thoughts and prayers as you move forward. Please keep us posted as we will be anxiously waiting to hear how you are and available to help you through this.

katheryn

Phoebesnow

Anal rectal cancer

i was diagnosed the same because it was on the dante line(not sure about spelling but something like that).  I have Kaiser as a provider.  I also had weight loss and I was eating gigantic amounts of food.  It is also important to know if it is the slow growing kind or the more aggressive type.  This information will be in the biopsy report.

 

i understand your worries regarding your other issues.  I believe the body has a way of protecting it self.  I think you will see the other issues subside a bit while going thru treatment.  The first 2 1/2 weeks is not so bad, certainly  not what we build it up to be in our mind.  Even the chemo is not so bad.  Week 3 things get a little rougher but with pain management you will be ok.  The last 3. Treatments were the roughest for me.  The 2-4 weeks after treatment were pretty horrible for me.  I am Irish and have very thin delicate skin and I have no meat on my bones.

 

try to enjoy yourself before treatment so you have those fun memories to think about while you get thru this.  i only watched comedy tv and films during this time.  It helped me.

 

at this point I would say concentrate on the destination and not the journey.

 

god helped me alot.

mp327

"Anal Rectal" Cancer

The only conceivable explanation for the use of this term as I see it, is if the cancer began as either anal or rectal and that the tumor has invaded the other area.  I would think that even if this is the case, it is either anal or rectal, due to the type of cancer cells found.  To me, it's no different than anal cancer that has metastasized to the lung or liver.  It is not lung or liver cancer at that point, it is still anal cancer.  The one clue that this is anal cancer is the fact that the Nigro protocol is the treatment being planned.

Wisteria83, please familiarize yourself with anal cancer and Nigro protocol and ask your doctors for a full explanation/description of your cancer--it's location, what type of cells, and why you've already been told there is no nodal involvement or distant metastasis before you've even been scanned.  I do hope that your doctor is right and that you are Stage 1 or, at the most, Stage 2.  

Wisteria83

mp327 said:

Wisteria83

Please don't apologize for the length of your introduction.  Giving us your full story will help us help you.  I'm sorry that your diagnosis has brought you here, but the support here is great. 

I was diagnosed with anal cancer in 2008, very similar to yours--on the fence between stage 1 and 2 with no nodal involvement or metastases.  I had 30 radiation treatments and 2 rounds of chemo (5FU and Mitomycin).  Despite some manageable long-term side effects, I am doing quite well.  Like you, at the time of diagnosis, my weight had dropped for no known reason.  I now believe it was because of the cancer.  Of course, once I began treatment and got far enough into it to begin having side effects, my appetite tanked and I lost even more weight.  My medical oncologist became very concerned and threatened to put me in the hospital for nutrition if I lost any more weight.  I literally had to force myself to eat.  So, my advice to you echoes what your doctor has said--try to gain some weight now, prior to treatment.

I would certainly want an explanation from your doctors as to why they are calling it Anal/Rectal cancer.  Anal cancer is typically squamous cell cancer, whereas, rectal cancer is typically adenocarcinoma.  This means the cell types are different and are treated differently.  I had an experience with a hospital tech who kept referring to my cancer as "rectal."  I finally had to correct them and explain to them that anal and rectal were two different things and referred to two different parts of the anatomy.  Geez!

I cannot really answer your question with any authority about how fast this cancer grows.  However, in my own experience, I believe it was present for years prior to my diagnosis.  The rate at which it grows could depend on the person and any other compromising factors.  In your case, it's possible that your immune system was compromised by your other health issues, but I just don't know.

As for pain management during your treatment, I can see your dilemma, since you are already on pain management.  I do know that some people have used Fetanyl patches for pain control during this treatment, so perhaps that will be what your doctors will continue.  Obviously, all of your doctors will need to confer about this.  I will tell you that my burns were quite painful, so I hope you can get something that will be effective in controlling your pain.  I was guilty of not taking enough of the prescribed medication and suffered needlessly, IMO.  If I was doing it over, I would have taken whatever I needed to to avoid that kind of pain.

This will be a challenging journey, albeit relatively short, as compared to treatment for other types of cancer.  So many of us have been there, done that, and are still here to talk about it.  You will join our ranks as a survivor when this is over.  We are here to help you get through it, so please come here and let us know what you need from us.  As good as doctors are about knowing how to get rid of the cancer, some of them are very little help when it comes to helping us get through treatment and deal with some of the possible side effects.

So that you are well-informed about this disease and the treatment, I urge you to go the website for the National Comprehensive Cancer Network (NCCN) and learn as much as you can about it.  You'll need to complete a brief registration form online, then you'll have access to the latest treatment guidelines, which will help you when discussing your treatment with your doctors.  The website is http://www.NCCN.org

I wish you all the very best and hope you'll let us be your virtual support as you begin this journey.  You will get through this!

Martha

Anal/Rectal

Thank you Martha.  I  spoke with my nurse yesterday.  She's going to be my "Navigator" throughout this journey.  She told me that it is squamous cell carcinoma and it's location is right where the anal sectection becomes the rectal section.  She said the Dr. is now calling it Anal cancer because he thinks it originated there and just travelled up a blood vessel to the rectum.  I'm glad that's cleared up.

She also said that she would call my pain management dr. and tell him what's going on and that they would be still managing my pain with input from my oncology team.

Thank you for sharing your story.  It really helps.

Wisteria83

eihtak said:

Wisteria83...

I am so sorry for the situation you are in, but glad you have found us and hope this forum can be of some help to you. This dx is very overwhelming and the first several appointments in getting treatment plans in place only seem to make that worse! Know that at least you are not alone and we are here to help so please come back often. 

I also recommend registering on the NCCN website. You will have access to guidelines and protocall treatment recommendations to your cancer based on stage. Keep in mind that doctors need to take personal situations into consideration and customize treatment, but should be following these guidelines.

As I'm sure you have read, the pain from radiation can be intense. I would address this ahead of time with your pain management team and radiation doctors and pray they are able to work up a plan to stay on top of that rather than trying to treat it once it hits. There are several ointments available and some people find great relief from using these as well. As Martha said, please try to eat eat eat now, before treatment just to get yourself as prepared as possible for potential weight loss. I did have some complications and ended up in the hospital on TPN (a nutritional supplement administered through my port) It wasn't awful, but could have been avoided had I forced myself to eat better.

I will keep you in my thoughts and prayers as you move forward. Please keep us posted as we will be anxiously waiting to hear how you are and available to help you through this.

katheryn

Thank you Katheryn.  They

Thank you Katheryn.  They gave me a huge folder of papers to look over and I haven't even opened it yet.  I'm not in denial or anything, it's just that I'm trying to process what I was told Thursday and can't absorb anything else quite yet.  I'll definitely check out that site that you and Martha mentioned.  The cancer center has a nutritionist that they are going to refer me to.  They also have a psychologist if I want to see her.  I need to balance my needs because I know that each extra person I see is going to add to the overall cost of this ordeal...ala carte cancer treatment, if you will.  

 

Wisteria83

Phoebesnow said:

Anal rectal cancer

i was diagnosed the same because it was on the dante line(not sure about spelling but something like that).  I have Kaiser as a provider.  I also had weight loss and I was eating gigantic amounts of food.  It is also important to know if it is the slow growing kind or the more aggressive type.  This information will be in the biopsy report.

 

i understand your worries regarding your other issues.  I believe the body has a way of protecting it self.  I think you will see the other issues subside a bit while going thru treatment.  The first 2 1/2 weeks is not so bad, certainly  not what we build it up to be in our mind.  Even the chemo is not so bad.  Week 3 things get a little rougher but with pain management you will be ok.  The last 3. Treatments were the roughest for me.  The 2-4 weeks after treatment were pretty horrible for me.  I am Irish and have very thin delicate skin and I have no meat on my bones.

 

try to enjoy yourself before treatment so you have those fun memories to think about while you get thru this.  i only watched comedy tv and films during this time.  It helped me.

 

at this point I would say concentrate on the destination and not the journey.

 

god helped me alot.

Pain

Thank you.  My back has been in a flare since I had surgery on Feb. 2nd.  My surgeon said it's because of the position I was in for the hour and a half that it took, and it's common for people with orthopedic problems to experience this post surgery.  Hopefully it will subside soon because it's sure not helping my situation.  I know that I can go to pain management for treatment if needed.  I had two epidural steroid injections last summer that helped tremendously, I'd just rather not have to deal with that too if I can help it.

I'd like to do something fun before treatment begins, but honestly, I'm so tired, I can't think of anything to do.  I've been bleeding since just before Thanksgiving and while it stopped for nearly two weeks post surgery, it's been back with a vengeance for over a week now and I'm also having pain up inside that I didn't experience before.  I'm anemic, but not quite to the point where I need a transfusion.

In October we got two Golden Retriever puppies.  They are nearly six months old now and take a huge amount of time and energy.  They really tire me out, but they are also wonderful for taking my mind off things.  They are so much fun to watch and play with, and the male, Fergus is extremely affectionate, so that helps too.  Sadie is Satan's Spawn most of the time, but she also has her sweet moments.  They will definitey help me through this ordeal to come.

mp327

Wisteria83 said:

Anal/Rectal

Thank you Martha.  I  spoke with my nurse yesterday.  She's going to be my "Navigator" throughout this journey.  She told me that it is squamous cell carcinoma and it's location is right where the anal sectection becomes the rectal section.  She said the Dr. is now calling it Anal cancer because he thinks it originated there and just travelled up a blood vessel to the rectum.  I'm glad that's cleared up.

She also said that she would call my pain management dr. and tell him what's going on and that they would be still managing my pain with input from my oncology team.

Thank you for sharing your story.  It really helps.

Wisteria83

Thanks for your response.  I'm glad the question about the location and type of cancer has been cleared up.  I hope that your pain management will be effective.  Please keep us posted as you get closer to treatment.  You will get through this!

Martha

tanda

Wisteria83 said:

Thank you Katheryn.  They

Thank you Katheryn.  They gave me a huge folder of papers to look over and I haven't even opened it yet.  I'm not in denial or anything, it's just that I'm trying to process what I was told Thursday and can't absorb anything else quite yet.  I'll definitely check out that site that you and Martha mentioned.  The cancer center has a nutritionist that they are going to refer me to.  They also have a psychologist if I want to see her.  I need to balance my needs because I know that each extra person I see is going to add to the overall cost of this ordeal...ala carte cancer treatment, if you will.  

 

Wisteria83

It sounds as if your cancer center is very organized.  I would be very surprised if consults with a nutritionist, psychologist or other support person would be billed separately.  Please check this out because I urge you to take advantage of any kind of support service that is offered.  Also, social workers are knowledgeable about community resources (transportation, volunrteer services,etc) There are also many local and national organizations that offer financial and other kinds of help to patients.

Wisteria83

tanda said:

Wisteria83

It sounds as if your cancer center is very organized.  I would be very surprised if consults with a nutritionist, psychologist or other support person would be billed separately.  Please check this out because I urge you to take advantage of any kind of support service that is offered.  Also, social workers are knowledgeable about community resources (transportation, volunrteer services,etc) There are also many local and national organizations that offer financial and other kinds of help to patients.

Support

Thank you Tanda.  I will ask if services bill separately.  I just assumed they would because it seems like everything has a code.