Guidance Needed

[jillb6380]

A close friend was diagnosed as stage 4 colon cancer about 7 months ago at 48 years old. She had one mass at the time that was surgically removed and she had a colostomy. She then underwent 6 months of chemotherapy finishing only recently. Several weeks prior to the last chemo treatment she began experiencing the same abdominal pain than she did prior to surgery and since then it has been discovered that there are two new masses that grew during chemotherapy. Why they were not discovered before now we do not know. It does not appear any scans were done after chemo commenced until she complained of pain. She was admitted to the hospital six days ago allegedly for pain management. The doctor also told her at that time about a surgical option called "de-gutting" and/or doing another round of chemo. However, he also told her that the chemo she had was the best there was to be had thereby not giving alot of hope to the thought of more chemo. She was told she had two weeks to two months to live.

Currently, she is in incredible pain in the hospital and is on a morphine drip and also a pain patch. She is very bloated and doesn't know why. She is afraid to go to sleep. She has been told that the bloating could be constipation from the morphine so she feels that she is in a catch 22 in that she eats then has pain so she hits the morphine pump for the pain and the morphine is allegeldy creating constipation which causes more pain. So, it's a vicious circle. Forgot to mention that she is on stool softeners but no luck as of yet. Today is the worst day we've all seen her. She is not herself and is all over the map emotionally which could be the result of the disease, the drugs, the pain, the emotional toll of the situation or a combination of all of these things. Her son, an adult, has chosen to bury his head in the sand and is nowhere to be found. He has not come to see his mother. Her sister is of no assistance. Her doctor has not been by to see her. Only on call doctors from his practice come by but she says that they give her no answers and she feels it is because she is not their patient. Yet she cannot get her doctor to show up at the hospital. All she has are her friends and we are all worried because something needs to be done but we don't know what to do. She wants to get another opinion and we want to see her get competent care. Rather than to be stuck on the cancer floor of a hospital in a small area with few cancer doctors to begin with and then to have her doctor not even show, we would like to assist her in getting to a cancer treatment center and tshe wants to go. She wants to go to Moffitt in Tampa and we want to get her there but don't know how to go about it. She thinks she needs to talk to her doctor first but how do you do that if he won't come to the hospital. Also, there is no way she can do this alone. She is in so much pain it is affecting her ability to do anything else.

What can we do to get her some immediate help and get her moved? There may actually be no hope left at this point but she and we want to hear that from a cancer professional not the guy who may have screwed up her care here by failing to scan all the while and who doesn't care enough to get to the hospital for his patient.

[Rick7]

I am sorry that your friend is going through this pain.

I can address a couple of your concerns.
I did not have any scans during chemo either. About a month after chemo was done, I had a follow up Colonoscopy and a Pet/CT scan.

While I was in the hospital after surgery/before chemo, I was in pain from constipation and gas. My stomach looked like a basketball, I thought my staples would pop out.
I was told I had to stay in the hospital until I pooped, well by the 8th day I had not and my surgeon said I could go home anyway. The stool softeners were not working and the pain meds were causing the constipation. When I got home I ate little pieces of bran muffin and had a dose of Miralax. The gas and poop finally came out and the pain went away.
While in the hospital, laying on my left side seemed to help the gas move along.

I do not know how to go about getting her to the cancer center. Can you just call and say that you are on the way?

Rick

[butterfly]

Hi Jill - I am sorry to hear about your friend's pain and struggle with cancer. Do you already live in Florida? What if you or whoever is able to make care decisions for your friend call Moffitt and explain the situation and ask for their advice on how to move her? She shouldn't need a doctor's approval to discharge herself - she would just likely have to sign something that she is discharging herself against medical advice. The questions are whether she is physically able to leave if she is in so much pain and how to transfer her to another care facility. Is there a patient advocate at the hospital where she is who you can speak with? She shouldn't have to stay there if she is not happy with the care she is receiving. I hope you can get things straightened out for her. She is lucky to have a good friend like you who cares so much.

[karin]

I am so sorry that your friend is going through this terrible pain and struggle. There is a medication called relistor that can be give subcu, it antagonizes the opiate receptors in the bowel so she can poop, and suppositories and enemas can be very helpful as well and should be offered to her in the hospital. The surgical procedure is probably "debulking surgery", which is removing tumors from peritoneal surfaces. This type of surgery is usuallyonly done in selective locations, you can google cytoreductive surgery with HIPEC procedure (heated intraperitoneal chemotherapy) to find out more. Depending on her insurance, she may be able to get ambulance transport to such a center for evaluation. The idea of speaking with the patient advocate or a case manager or social worker is a good idea as well. Good luck, it sounds like she needs a skilled surgical oncologist quickly. Sending positive thoughts and prayers your and her way.

Karin

[pearlgirl]

In the meantime, as decisions are being made, I would check to see if Dilaudid is a possibility as a pain reliever. I'm not sure if it is s constipating, and it was much more effective for pain for my DH than morphine.

[John603]

Jill,

I don't understand how your friend was Stage 4 with one mass? By definition someone with Stage 4 has had the cancer metastise to another location.

Do you want to be in charge of her medical decisions? If so, you could ask her to give you a durable power of attorney which means that you would make her medical decisions if she is incapable. Usually this is given to a spouse, parents, children or siblings. Or she could at least give you HIPPA clearance so that you can get copies of reports, talk to doctors, etc. Of course it would be up to her to make this decision.

As to the constipation, the hospital should be able to get her relief on this. I don't have a colostomy so I'm not sure how constipation works with a bag.

Does she have a primary care physician? When my oncolologist was being too conservative for my liking, I sent my PCP a letter requesting a referral to another onc. I explained that I thought a PET was in order (my first). My PCP contacted my onc and the onc had me come into the office. He told me that we would do the PET and that he would be more aggressive going forward. Specialty docs live and die by referrals. The last thing that they want is a PCP not to refer to them.

[jillb6380]

Thank you to all of you who replied. It has been a trying couple of days since my last post but some major things have changed since then. Some good some bad. With all the friends getting involved we got her sister and her doctor in the loop and we also learned some additional highly relevant information about her medical condition. The good is that the pain is seemingly under control and she has agreed to undergo more chemo. The bad news is that her condition is quite grave and far worse than she was letting on. Being ignorant of how this disease works and how stages are determined and so forth we were taking at face value what she was telling us when she was more coherent. Sadly, even with the chemo she is merely extending the inevitible another 6 months or so if it is even successful. My hope for her now is that the pain is truly and finally manageable to the point that she can go home where she can be with her beloved dog for whatever time she has left. Thank you all for your support and guidance.