Stage 4 rectal cancer w/mets to the lungs

vtspa6

After 2 mths of tests, my husband has been diagnosed with this.  Heck back in 2011 he had a colonospsy (sp?) and did not show anything but hemroids (sp?).  Then in 2014 he had the hemroids removed.  Dr did not see the tumor at that time.  Had trouble w/bowel movements and had another colonospsy on July 10th and found the tumor.  After all the scans and test found it has spread to lungs.  He is just 56 yrs old.  He won't start chemo until Sept 16th because the chemo 'lounge' is booked up until then.  It is taking so long for anything to happen except nothing but test and now he has to wait another 2 wks to get in?  GRRR.  On top of that, the Dr was going to give him a medication (starts w/ an A?) but said he will have to wait because he might have to get a bag installed before taking this medication.  I am thinking he now is concerned about this?  For 2 mths that is all my husband complained about is not being able to have normal bowel movements.  We are new to this and I guess I just needed to vent and am sure in future I will ask many questions.  Thanks for reading my post.

eihtak

vtspa6

Hi,

I am so very sorry for your husbands recent diagnosis.  The waiting for anything and everything throughout this process is a huge headache for us all.

While rectal (colorectal) cancer and anal cancer have many similarities, they also have some differences so you may find it useful to post on the colorectal board as well as this one....that way you'll get double the help!

Many people here were either mis-diagnosed or had a clear colonoscopy prior to finally finding anal cancer, so that is not unusual. I was diagnosed 4 1/2 yrs ago but just last spring was dx with mets to my lung. I did have a colostomy bag as part of my initial treatment so can offer suggestions if that is the course for your husband as well.

Please keep us posted and let us know how things are going as I'm sure you will have many questions that someone will be able to relate to here. Until then, I will have you and your husband in my thoughts and prayers for recovery and healing.

katheryn

vtspa6

eihtak said:

vtspa6

Hi,

I am so very sorry for your husbands recent diagnosis.  The waiting for anything and everything throughout this process is a huge headache for us all.

While rectal (colorectal) cancer and anal cancer have many similarities, they also have some differences so you may find it useful to post on the colorectal board as well as this one....that way you'll get double the help!

Many people here were either mis-diagnosed or had a clear colonoscopy prior to finally finding anal cancer, so that is not unusual. I was diagnosed 4 1/2 yrs ago but just last spring was dx with mets to my lung. I did have a colostomy bag as part of my initial treatment so can offer suggestions if that is the course for your husband as well.

Please keep us posted and let us know how things are going as I'm sure you will have many questions that someone will be able to relate to here. Until then, I will have you and your husband in my thoughts and prayers for recovery and healing.

katheryn

thanks for the reply Katheryn

Thankyou for your reply.  The waiting is so hard.  I guess I want him getting chemo now!  Am sure everyone is like that.  The Dr scheduled surgery for the colostomy bag this Wed.  They will leave the tumor alone for now.  This way the healing time will be cut short and he can finally start chemo.  It has been since July 10th when the tumor was discovered and the other day when it was dx's that he had mets to lungs also.  What bothers me is why did the Dr wait until all test come back to finally decide he needs a bag.  He knew about Tim's bowel movement complaints all along also the size of the tumor.  Dr said he needs to take Avastatin w/treatment but will not be able to have surgery once he starts the drug. Dr. (finally) was concerned that the tumor might increase in size before the chemo kicks in and he would be blocked up. The saying 'one day at a time' might make since but it isn't helping at the moment.  Oh well, not much we can do but listen to the Drs.

 

eihtak

vtspa6 said:

thanks for the reply Katheryn

Thankyou for your reply.  The waiting is so hard.  I guess I want him getting chemo now!  Am sure everyone is like that.  The Dr scheduled surgery for the colostomy bag this Wed.  They will leave the tumor alone for now.  This way the healing time will be cut short and he can finally start chemo.  It has been since July 10th when the tumor was discovered and the other day when it was dx's that he had mets to lungs also.  What bothers me is why did the Dr wait until all test come back to finally decide he needs a bag.  He knew about Tim's bowel movement complaints all along also the size of the tumor.  Dr said he needs to take Avastatin w/treatment but will not be able to have surgery once he starts the drug. Dr. (finally) was concerned that the tumor might increase in size before the chemo kicks in and he would be blocked up. The saying 'one day at a time' might make since but it isn't helping at the moment.  Oh well, not much we can do but listen to the Drs.

 

vstpa6

Hi,

At least you now have a plan in place and that may bring some comfort. One thing I recommend is to write down any questions that may come up between dr appointments. It always seemed to me I'd have several but could barely think of one when I'd get there.

I did not ever take Avastin but believe it slows the growth of new blood vessels and have friends on another board that have been prescribed that drug. If I understand correctly, the reason it would not be given before/during surgery is because it would slow healing in the surgical site. It would be given later though, to slow the growth of a tumor. Alot of this whole journey is unfortunately related to timing..... as you say, we too often find ourselves being told to take it one day at a time, yet we are also at the mercy of our medical team and their schedules!

There are a few different types of colostomies and some are permanent while some are reversable. Mine is called a loop ostomy and was intended to be reversed but severe radiation damage to the sphincter has made that not a good option.  Because of how a loop ostomy is done, I still have my rectum and anus....just out of commission! I think with rectal cancer the surgery is usually permanent as the rectum is removed and the area is sewn shut. (A bit more healing time as well) I did have an adjustment period, but once feeling better was easily able to adapt to life with an ostomy. Does your husband have a "stoma nurse" or wound care nurse? They are specially trained nurses who work with people to adjust to living with ostomies. There are many products and resources available to help and a stoma nurse is a huge help in getting connected. Ask if one is available to help with questions, as other nurses do not always have a lot of experience in this area and although well intentioned, they don't have the answers.

I will continue to keep you both in my thoughts and hope that Wed surgery goes smoothly.

katheryn

mp327

eihtak said:

vstpa6

Hi,

At least you now have a plan in place and that may bring some comfort. One thing I recommend is to write down any questions that may come up between dr appointments. It always seemed to me I'd have several but could barely think of one when I'd get there.

I did not ever take Avastin but believe it slows the growth of new blood vessels and have friends on another board that have been prescribed that drug. If I understand correctly, the reason it would not be given before/during surgery is because it would slow healing in the surgical site. It would be given later though, to slow the growth of a tumor. Alot of this whole journey is unfortunately related to timing..... as you say, we too often find ourselves being told to take it one day at a time, yet we are also at the mercy of our medical team and their schedules!

There are a few different types of colostomies and some are permanent while some are reversable. Mine is called a loop ostomy and was intended to be reversed but severe radiation damage to the sphincter has made that not a good option.  Because of how a loop ostomy is done, I still have my rectum and anus....just out of commission! I think with rectal cancer the surgery is usually permanent as the rectum is removed and the area is sewn shut. (A bit more healing time as well) I did have an adjustment period, but once feeling better was easily able to adapt to life with an ostomy. Does your husband have a "stoma nurse" or wound care nurse? They are specially trained nurses who work with people to adjust to living with ostomies. There are many products and resources available to help and a stoma nurse is a huge help in getting connected. Ask if one is available to help with questions, as other nurses do not always have a lot of experience in this area and although well intentioned, they don't have the answers.

I will continue to keep you both in my thoughts and hope that Wed surgery goes smoothly.

katheryn

vstpa6

I'm very sorry your husband has to go through this and I want to wish you both all the very best.  Please keep us posted as his journey continues.

Martha