So Many Questions

Questions....

Re:
"The liver specialist did call us the next day and say that we could attempt to contact the transplant team - they specialize in the hepatic hypertension and surgury so they may be better equipped to handle his issue, but they arent oncologists either."

Such a demand for Oncologists! The chemicals obviously didn't do what was hoped for; neither did the radiation. Surgery usually provides the best resolve, but you're avoiding it because they aren't "Oncologists"?

The University of Indiana is the largest intestinal transplant facility around. They are specialists in the field. They have accomplished total pelvic reconstruction and transplant. Are they all "Oncologists"? Don't think so.

Re:
"They also suggested that he could get another round of chemo if he became symptomatic, but he has never been symptomtic per se."

Not "symptomatic", just showing signs of unresolved liver lesions...?   hmmmm...

You should seek some other opinions from qualified colorectal surgeons not of the same group or organization. But it sounds like you guys have done that, and you received some answers, most of which you reject due to the fact they are not coming from an "Oncologist".

Sloan Kettering is a great facility, and they do not limit their care to mainstream "oncology"; they use whatever they can to try to stop the cancer from growing. It is one of the best facilities.

The Indiana U (Clarian Clinic) is one of the finest facilities around.

But none will be able to help if you reject what they are offering. And from what you typed here, it sounds like they've offered what makes the best sense.

I give you guys my best wishes, I truly hope you find your way.

John

I had rectal cancer at 49. It came with tremendous paralyzingly pain too. Iterestingly 800mg ibuprofen taken every 6 hours took care of it for me. Eventually the cancer may grow to a size tgat blocks his output and he is gonna have to have emergency surgery. In my opinion these things are better to be done in a controlled manner. That would relieve his cancer load and that may lead to good things.

I live with permanent colostomy and besides being some constant annoyance it doesn't hold me back from doing anything I want.

All the best for you guys,

Laz

Alyssha said:

Please let me Clarify

It seems I wasnt clear on a few points.  We are not refusing anything.  The VA which is where he gets his benefits refused to do the surgery.  They let us go to Sloan and then Sloan refused the surgery as well.  It is considered high risk because of the portal hypertension, and no one will do it.  Both of these Dr.s were colorectal surgeons, The point of going to the transplant team is that they MIGHT be more willing to do surgery on a patient with this hepatic hypertension, but it would not be a surgical oncologist, so they may refuse as well. We have accepted the risk, but no one wants to give us the option. I only mentioned that the surgeons at the transplant team and not oncologists - they may be beter able to deal with the portal hypertension but may not be willing to take on the cancer and total removal of the colon AND rectum. We know that surgury and a bag is the only option that would potentially cure him, we just can't get anyone to do it.  

He currently doesnt have any issues with the liver - no lesions, and his numbers are almost perfect.  It seem strange that they are so concerned about his liver , but I am not a dr.   They feel that the surgery, even if successful (as in he doesnt bleed out) could put him into liver failure.  

As far as not being symptomatic - he never was.  The liver lesion was found during a routine scan.  The lesions in his colon were found during the testing to try and get him a transplant. (You are correct, he cannot get on the list for transplant till he is cancer free)  Other that the pain that he has now, (since radiation) he has never been "symptomatic" so now he has terrible pain, but how could we possibly know if it is just from the radiation of progression of the cancer.  He is on 20 mg of oxy every 4 hours, the VA is VERY stingy about pain meds and it is not working anymore. 

Now i cant see the rest of the comments so I will ad again   

I think I responded to everyone - We all know the result of him not getting the surgery.  While I will continue to look for that to happen, I need to understand what will happen if it doenst.  Will they even do the emergency surgery if he has a blockage?   I am afraid they won't.   He is saying that he has so much pain, and now he can't go to the bathroom at all - but he tends to be very symptomatic when his fear kicks in.  Another reason I don't really know where he is at.  

We will see the oncologist at the VA today - but thus far we have been unimpressed.  I was so grateful when we were referred to Sloan, we were both crushed when they refused to do the surgery.  There is a care coordinator there I trust, so I will reach out to her and see if she has anymore feedback.  

Thank you again for your responses,  and Im sorry if I was unclear. 

portal hypertension

Re:
"The point of going to the transplant team is that they MIGHT be more willing to do surgery on a patient with this hepatic hypertension, but it would not be a surgical oncologist, so they MAY refuse as well."

"they MAY be beter able to deal with the portal hypertension but MAY NOT be willing to take on the cancer and total removal of the colon AND rectum"

There's an awful lot of "MAY" and "MAY NOT", and some "MIGHT" being tossed around.

It sounds (to me) that the Oncologists, surgeon or otherwise, are dragging feet with the surgery.

"portal hypertension", or any reason for higher than normal blood pressure can be resolved for necessary surgery. In the ER, they address all problems that may interfere with saving an individual's life; this is no "big deal".

I mentioned the University of Indiana, since my wife's nephew is one of the administrators there. (Google university of indiana transplant center) It's one of the best in the area. They may be able to offer a suggestion regarding a closer facility.

Re:
"He currently doesnt have any issues with the liver - no lesions, and his numbers are almost perfect."

"As far as not being symptomatic - he never was.  The liver lesion was found during a routine scan.  The lesions in his colon were found during the testing to try and get him a transplant."

This is very confusing. He doesn't have a problem / He does have a problem...

And finally:
" Will they even do the emergency surgery if he has a blockage?   I am afraid they won't."

Laz answered you rather well! Surgery is best when there's no emergency to do it.

Re:
" He is saying that he has so much pain, and now he can't go to the bathroom at all - but he tends to be very symptomatic when his fear kicks in"

If he can't empty his bowels, he is an emergency situation. All the problems you mentioned that he's been suffering from are SYMPTOMS of an underlying problem. That, is the generic definition of being symptomatic.

You appear to be very negative with all this, and it's a bad emotion to carry.

There are great surgeons out here that would do the rectal surgery without a fuss. Taking the entire area out Ala' Barbie Butt style may sound radical but it's 100000s better than radiation and the woes that it presents long-term.

"Bleeding out" is a ridiculous term to refer to by any practioner. Are they going to perform the surgery in the Walmart parking lot? Maybe I missed that...

Getting away from the VA physicians can be a good thing, although there are many working with the VA that are excellent in their field.

If I were your mate, I would forget the "oncologist" requirement you seem to lean into and seek advice from qualified colorectal surgeons and gastroenterologissts.

You have to have better faith in his recovery through surgery if you desire to bolster his faith for survival.

Sorry if I type without the right amount of Political Correctness, but your pal is going through a really death defying period. He needs your support, not all the "maybe not" "may not" attitude.

My best hopes are for you both.

John

Alyssha said:

Trying to see thru your lack of political correctness.

It is enttirely possible that I am reading it wrong, but you don't seem to be understanding some of what I am saying.  

The May and Maybe are the words coming from the liver specialist at Sloan. NOT ME.  First we saw the Surgical oncologist at Sloan, he directed us to the liver specialist at Sloan.  He has hepatic hyper tension as a result of liver disease  Since they never did a biopsy of the liver tumor there is no way to determine if the tumor was the result of his underlying liver disease (probably from hep C or cirrosis) or if it was mets from the originaly colon cancer  So at this time he does have liver damage, but no tumors.   His liver function tests are normal and there are no cancerous spots on his liver.  

Dragging their feet is not what they are doing - they are refusing to do it.  Both at the VA and at Sloan.  Multiple doctores have discussed the possibility of him bleeding out on the table.  He has enlarged varicies in the rectum due to the liver disease.  They could take the colon, but there are so many blood vessels in the rectum no one wants to touch that.  And that is the largest tumor and the one that responded the least to chemo and radiaiton. 

Of coures it would be best to not have surgery in an emergency situation, but they won't.  As far as him being "symptomatic" or not - basically Sloan said he was able to wak into their office so he was still doing pretty well.  His pain did not seem to factor in for them - it could just be from the radiation, therefore it was not necessarily a symptom.  Same for the constipation.  That he could live like that for months or years, thus making the surgery too high risk.  Today we go to the VA and will dicuss his increased pain and they will probably do an xray to confirm there is not a blockage.  We have no choice but to go to the VA.  Any care outside the VA has to be approved by them.  

I have to say, I am a newbie here, but your tone and assumption that I am negative really pissed me off.  I have been by his side for every appointment and every issue for 16 months.  I would give ANYTHING for him to have surgery, since I know quite well that that is his best option.  It may be his only option, but if the transplant team wont do it - I have no idea what we could possibly do next.  That is why I came here.  Not to be told that I am negative.  You have no idea what I do for my husband or don't do - I cam her for thoughts and ideas - not judgement.  I can assure you - I have far more faith in his possibiity to survive than he does.  

 

 

It's often so difficult to communicate on forums; oftentimes  things are misunderstood or misinterpreted, and we don't have the benefit of body language and facial expression to get the nuances. That being said, welcome to the  board, I am very sorry you  have to be here and sorry your husband is having such pain.

I agree with the advice to  seek another opinion, but with the VA that may be difficult, and since  Sloan has also refused to do the surgery,  I wonder  how much good another opinion would do. Have you made a list of your questions and concerns and been able to find a doctor who  will answer them without brushing them off?

I was diagnosed with  rectal cancer with mets to the liver a year ago this week.  I  too, am not a candidate for  surgery, but my oncologist is optimistic that chemotherapy  can give me more time with a decent quality of life and so far the chemo and radiation have done that for a year and we're hoping  this  continues, but we have to take it one step at a time. Meanwhile I'm trying to  live as  normally as possible by keeping up with activities and interests like gardening, going to  the farmers market, ballgames, art shows, etc.  There are ups and downs, progress and setbacks, but  so far so good. I received  8 rounds of  FOLFOX plus Avastin followed by  28 chemo-radiation treatments. I had  very severe rectal pain in the  beginning, but it lessened  while on  chemo and the rectal tumor shrank, but after the radiation the liver tumor had grown so I  went back on chemo.  I just found out today that  I'll be getting a different combination of chemo drugs this week, so I'm thinking my last  CT scan was not the good news we'd hoped for, but  hopefully the new drugs will work better and let me keep on keeping on.

  I did have quite a bit of rectal pain during and following radiation, but  a lot of it was from hemmorhoids caused by alternating bouts of  constipation and  diarrhea. Imodium and prunes became a regular part of my diet for a while. Radiation  itself can cause damage t the colon and rectum; it sounds sort of simplistic, but have the doctors checked  to see if there was  damage  to the colon caused by the radiation and whether   a fissure or hemorrhoids might be part of his problem? It sounds, too, like   he has quite a bit of anxiety caused by the worry,  and the negative  news about from the medical staff  as well as anxiety from the  pain and that may be making his pain worse, and if he isn't eating well, that could also be making his problem worse.  I wish there was an easy way to lessen the anxiety for him and for you. I've found that yoga has helped me but  everybody has different ways of coping- I do hope you  can find the best way for you and Robert.  Hang in there and let us know how you and he are doing.

Grace/lizard44 

Alyssha said:

Thank you

We went back to the VA today and as always it was frustrating at best.  Thank God for my friend or nothing would ever get done there.   I certainly hope that I can help my husband, but I know the stress and fear is getting to me too.  I am so grateful for forums like these.  

In order for ANYTHING to get done he has to be presented at the "tumor board" which will meet on Thursday.   They will reach out to the transplant team in Pittsburgh and see if they will even consider the surgery.  If not then they wil be the ones to decide the parameters of his 'palliative chemo'.  We have traveled to many VA hospitals in the last year - the one good thing about the tumor board is that there are many experts all weighing in on his case - apparently its fairly unique.  And I am so grateful that we were referred to Sloan at all - although terribly dissapointed that they can't help him. 

My husband decided not to do the xray - he said he will try increasing fluids, and they added another medication to help the constipation, so hopefully he will see a decrease in his discomfort soon.  They did change his pain meds a little as well - he is a lot more comfortable now then he was this morning.  (probably why I got so mad - as you said its terrible to see our loved ones in so much pain). 

Friday we wil hear from tehe tumor board, Monday we will go back to the VA liver Dr. and also see the palliative care Dr who would ultimatly be the one that will refer us to Hospice.  (That was a whole nother issue to get the referral...... VA SUCKS) Anyway - thanks to everyone, and I hope your headache has improved !!!

I used Xanax for anxiety, still take it for some doctor visits, it helps. Ativan also helps many, helps with sleep issues as well. Don't go to the VA for hospice, there's better local organizations], and it's all paid with Medicare part A. Hospice will get you the meds you need and any other medical devices you need, and do it quickly. The VA doesn't do anything quickly. They told my dad he had 2-3 years, so they wouldn't certify him for hospice, and he died three months later. That Sloan doc that said months might certify your husband, but hospice orgs. have doctors that can do it, as well. I just read your last post, so I know you've got hospice covered. I'm sorry for what your going through, and hope you find what you and he need to deal with this misery. I eat a lot of grapes and bananas to keep to pipes working, and grapes especially, are easy to munch even if your not very hungry. Hoping you get the things you and he need.............................................Dave

John23 said:

Stress, anxiety, and malaise oh my

Stress, anxiety, and malaise  oh my

Re:
"In looking back I feel like my response was too harsh to John so I apologize."

No need to apologize, really! And if it makes you feel any better, I'm probably the last one around that anyone would find a need to apologize to. This is a rare occurrence!

I get worked up over caregiver's attitudes. You likely never considered the ramifications of the use of simple words...

Here, your guy is scared poopless, worried about the future and surgery. The last thing he needs is his loved one telling him that an operation may not be possible, and even if it was, there's a good chance he'll bleed to death on the operating table.

"Bleeding out" isn't anything that happens. I would put a caveat in there, but honestly, no one bleeds out in the operating room. The ER gets patients that are damned near without enough blood to survive when they roll 'em in. They live.

I was (and remain) faced with a possible total pelvic exenteration. At no point, ever, with any of the physicians involved, did the words or concept of "bleeding out" ever arise.

I don't know who said those words to you, and have a strong feeling that it was not a physician, but the words of some unskilled nurse.

My surgeons and physicians do not pull any punches; they tell it like it is. If there was any possibility of something like "bleeding out", it would have been discussed in great depth. It does not happen.

And adding needless fear to an already big pile of fear does not do the patient good.

I would very strongly suggest you (and any caregiver) seek the advice from a caregiver's group. It is very difficult for any individual that has not ever been diagnosed with cancer, to have any serious understanding of the feelings of the cancer patient involved.

That was not typed out to insult you, none of my comments were intended to insult you.

Hospitals, cancer clinics, and nurses can provide information regarding caregiver services available in your area. You've got a very long road ahead; life can be made so much easier, with just a small amount of knowledge gained from others that have already been down the path you're travelling. You are not alone.

Especially here; you are never alone.

Give my best wishes to your old man; tell him to "hang on", the road can get rocky, but he'll survive!

John

I was sure I had read something a few years ago where a doctor  referred to a patient "bleeding out". While it may be a colloquial  rather than a medical term, it is a term a patient or caregiver  would understand better  than a medical term such as exsanguination or something.  I went looking for the article and discovered it was in reference to a young patient who had bled to death following a tonsillectomy. Here is the  quote: "The complications are very rare," said Dr. Albert Wu, director of the Center for Health Services and Outcomes Research at Johns Hopkins Bloomberg School of Public Health. But "uncontrollable bleeding can happen in almost any surgery. In extreme cases, you can bleed out."  He went on to list some of the conditions that might cause such a thing, and mentioned  several, noting that, "Certain patients are at greater risk during general surgery than others. Patients with pre-existing conditions such as heart, lung or liver problems are more likely to suffer from complications or die." Since  Alyssha's husband does have  liver problems, including  portal hypertension, he is at risk. I don't think  this was  said to cause him  greater anxiety, but to explain the reasoning behind the refusal of both the VA doctors and those at Sloan to undertake the surgery. His is a  very complicated  situation and I'm sure a very frustrating one for  both Alyssha and her husband, and I for one, can't fault her  for  her caregiving. We may all be on  roughly the same journey but some of us  take different routes with different views of the landscape.

Grace/lizard44

lizard44 said:

John, your comments about "bleeding out' triggered a memory

I was sure I had read something a few years ago where a doctor  referred to a patient "bleeding out". While it may be a colloquial  rather than a medical term, it is a term a patient or caregiver  would understand better  than a medical term such as exsanguination or something.  I went looking for the article and discovered it was in reference to a young patient who had bled to death following a tonsillectomy. Here is the  quote: "The complications are very rare," said Dr. Albert Wu, director of the Center for Health Services and Outcomes Research at Johns Hopkins Bloomberg School of Public Health. But "uncontrollable bleeding can happen in almost any surgery. In extreme cases, you can bleed out."  He went on to list some of the conditions that might cause such a thing, and mentioned  several, noting that, "Certain patients are at greater risk during general surgery than others. Patients with pre-existing conditions such as heart, lung or liver problems are more likely to suffer from complications or die." Since  Alyssha's husband does have  liver problems, including  portal hypertension, he is at risk. I don't think  this was  said to cause him  greater anxiety, but to explain the reasoning behind the refusal of both the VA doctors and those at Sloan to undertake the surgery. His is a  very complicated  situation and I'm sure a very frustrating one for  both Alyssha and her husband, and I for one, can't fault her  for  her caregiving. We may all be on  roughly the same journey but some of us  take different routes with different views of the landscape.

Grace/lizard44

"The complications are very rare."

Re:
" it was in reference to a young patient who had bled to death following a tonsillectomy. Here is the  quote: "The complications are very rare."

We're a pretty BIG group here on CSN; Real BIG. Maybe we should ask for a "show of hands" of anyone here that had been told prior to surgery, of the possibility of "bleeding out" during surgery.

OH WAIT.... The hand way in the back...? Oh, just scooting a fly...? Ok...

All physicians provide some information of "possibilities" of a problem (it's a CMA thing), and as many or more also provide the patient with some semblance of reassurance that it's rare; never has happened on their watch....

I do not know of any surgeon that will tell an anxious patient a risk of bleeding to death on the operating table.

Tonsillectomies were generally performed most often as an outpatient, and not under hospital conditions. Mine were taken out in the GP's office. hemorrhaging  after surgery would not go unnoticed, regardless. It is RARE. Is it possible? The roof could cave in; the operating table could develop a short circuit and electrocute all involved....

"what if", "maybe", "just suppose", "maybe possible imminent death"

The ER addresses any and all possible problems with patients with little if any medical history.

Alyssha's husband suffers of much the same ailments that the large percentage here have suffered from. High blood pressure is a symptom of an underlying problem. Ask any surgeon if he would avoid performing needed life saving surgery on a patient with high blood pressure.

I had liver problems and I think everyone here were diagnosed with liver problems at some point prior to surgery. Alyssha's husband does not appear to have anything all that unusual as compared to everyone else here. Anxiety can drive your blood pressure up, as well as any drugs and medications being used can drive the pressure up.

I would love to be able to restore Alyssha's husband's trust in the ability of those caring for him; his surgeons, but it is difficult to do so when there are doomsayers screaming in your windows.

Out of all the doomsaying text, the one thing that should be underscored, is the part that includes: "The complications are very rare."

That's the dialog that Alyssha's husband needs if he's being fed the diet of doom.

Good grief Grace.....

Be well,

John

GSP2 said:

John, as you probably know

there is a big difference between hypertension and portal hypertension.

Apparently rectal varices in portal hypertension are very common but

in a study i found the incidence of bleeding was up to 8%. The extent of

the bleeding can be quite variable. And can be severe.

 

Steve.

Whipping a dead horse....

There's easy to understand dialog regarding this topic here:
http://www.merckmanuals.com/home/liver-and-gallbladder-disorders/manifestations-of-liver-disease/portal-hypertension

To be concise, and to the point?

Portal Hypertension, as well as plain 'ol Hypertension is resolvable prior to, and even during surgery. The incidence of "Bleeding out" is remote; very rare in civilized society.

Re-routing blood flow around the liver to avoid / resolve Portal Hypertension is not an unusual part of an operating procedure if the need calls for it.

Doomscreaming isn't helping Alyssha's husband, and I doubt if my sole insistance that he'll be fine is going to matter much when there's so many telling him that I am wrong and that he stands a major chance of dying.

So to you "Alyssha's husband", goes my best wishes. Please try to locate a colorectal surgeon that understands the need to operate ASAP, and does not push for chemo or radiation as a resolve for a tumor. Tumor boards are geared to Oncology. Locate a surgeon that is not contractually held to an opinion from a "tumor board".

It doesn't have to be "all about the money".

You -will- be OK, in spite of the road being rocky this far.

Be well,

John