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Suggest Treatment For Stage-4 Bile Duct Cancer

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Posted on Tue, 24 Feb 2015
Question: Subscription reference: HCM102227 for XXXX (not patient)

I'm seeking medical opinion regarding my late husband's condition. At this time I do not have access to my late husband's hospital medical records; however, I can describe the conditions from which he suffered to hopefully give you enough brief history to reasonably answer my end question. I apologize for the length of my inquiry but feel you must have brief background to begin to answer my final questions.

My husband recently passed at age 62. For many years he was being treated for hypertension and high cholesterol; both under good control. In 2009 he had a heart attack and underwent angioplasties and three stents were placed to successfully restore blood flow to the lower half of his heart and he recovered fine; energy was restored; he felt much better. He developed type 2 diabetes around yr. 2005, which was treated orally; diet & exercise and his A1C's, regularly tested every 3 months were in the 6-6.5 range.

In 2013 my husband was laid off his job; lost his pension and had little success getting job interviews at 60/61years and he remained unemployed. By late 2013 he was depressed; slept 10-12 hrs/day; spent inordinate amounts of time on the toilet, stating his insides were tied in knots; painful and uncomfortable; gradually experienced increasing appetite loss and very slow & gradual weight loss. His energy level and strength gradually & steadily declined from 2013 into 2014 and his overall pain level steadily increased. He didn't have the strength or energy to help me get out or put away holiday décor for the 2013XMas/2014 New Year's holiday season. He was unable to do any yard work at all in March 2014 due to his increasing pain & lethargy. He continued to see his GP quarterly throughout 2014; heart ok; a1c's still higher than they'd like but under 6.5; cholesterol & BP under control but my husband looked and "felt like complete crap." He and his GP attributed his declined physical condition and general internal and back pain to overall health problems; age of 61 and depression from unemployment. My husband came to believe that with all his health problems, advancing age & depression from lack of employment he was simply supposed to feel as incredibly terribly and lethargic as he felt. By late Sept 2014 my husband felt a marked increase in overall internal and back pain and was unable to eat much of anything. He saw his GP, during which time a UTI was discovered and treated. His GP also ordered sonograms which immediately uncovered multiple gall bladder stones and two lesions on his liver. An MRI was ordered. His pain increased prior to the MRI being performed and I took my husband to the ER per his GP's advice and he was admitted for dehydration, which had caused kidney failure. MRI and other scans at hospital uncovered that my husband also had a t-12 vertebrae fracture, which he has zero clue when he might have sustained. He was treated for dehydration and kidney failure and his condition improved for release after 5.5 days in hospital, but his liver biopsy revealed stage 4 terminal bile duct liver cancer on 10/4/14. His colonoscopy was clear of cancer and when a stomach endoscopy was suggested 1.5 weeks later, my husband refused it. His oncologist estimated on 10/4/14 that his prognosis was 3-6 months, without treatment. With any therapies he might or might not extend his life but at the risk of decreasing quality of whatever life remained for my husband so my husband opted for pain management and palliative care. Cancer ended my husband's life on 10/21/14, only 17 days after his terminal diagnosis. His oncologist contacted me after his death to let me know that my husband's cancer was obviously much further progressed than he'd estimated and that my husband was an extremely stoic man in managing the pain associated from his conditions for a long time prior to his death.

I'm getting to my question... My husband applied for social security disability income two days prior to his death; the day before his 62nd birthday. SSDI doesn't tell me how they determined their conclusion that he became disabled in April 2014, only six months prior to his death. My husband believed, and after watching him suffer progressively more unidentified pain and lethargy over an extended period of time, I also agree that he was actually disabled at some point in 2013 and was already fully disabled no later than XXXXXXX 2014, ten months prior to his death. I must advocate on my husband's behalf for his full rights and must determine whether I should appeal SSDI's decision about when he became disabled. I'm seeking unbiased medical opinion on whether or not SSDI's ruling that my husband became disabled in April 2014 is reasonable and fair. I'm facing an appeal deadline, which fast approaches as I grieve and take care of so many tasks associated with my husband's death. Please let me know if you have questions and/or if you concur with SSDI's ruling regarding onset of his disability and, if not, what are your thoughts and what medical arguments might you suggest I use to file an appeal of SSDI's conclusion that my husband became disabled in April 2014? Thank you.
doctor
Answered by Dr. Pranjal Kulshreshtha (8 hours later)
Brief Answer:
They may be right technically. Difficult to prove otherwise

Detailed Answer:
Hi.
Your question(s) have a few technicalities that I would like to bring to your notice.
Firstly, I completely sympathize with your situation and also agree that medically speaking your husband was probably disabled by mid 2013.
However, the problem is that the SSDI will only take conclusive medical proof of a condition that fulfills their criteria of disability as eligibility for SSD income, in this case cancer.
As far as I have gathered from your descriptions, although your husband was in severe pain and discomfort by late 2013, there was no medical proof of the cancer at that time.
The proof of cancer came only in April 2014 with the MRI and biopsy. That is why the SSDI are saying that he became disabled in April 2014.
So, technically, they are right since before that there was no medical proof of the cause of his pain and discomfort.
If you do want to fight it out, the only things that you can use as argument in your favor are--
1. the cancer was diagnosed in stage 4 which meant that the cancer must have been in the body for quite sometime since cancers dont start in stage 4. It must have taken anywhere from 6 months to an year for his cancer to reach stage 4.
2. The T12 vertebra fracture must also have occurred due to the cancer spreading to the bone and destroying it. That also must have happened over a period of time. Also, his pain could be attributed to the fracture and the pain had been there for sometime.
So, to summarize, the SSDI are right technically, but you have a few points in your favor on which you can base your case. Rest is up to how the court sees it.
Hope this answers your question. If you have any more, I would be happy to answer them.
Thank You.
Above answer was peer-reviewed by : Dr. Yogesh D
doctor
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Follow up: Dr. Pranjal Kulshreshtha (9 hours later)
Thank you for your detailed answer and patience with me for this follow up.

Your conclusion may change as I must point out to you that my husband received his STAGE 4 cancer diagnosis on Oct 4th, 2014 -- his cancer was not diagnosed last April as you stated, though, in retrospect, I'm quite sure it was killing him by April and disabling him prior to that. SSDI made whatever arbitrary decision that his disability onset was April 2014, though I don't know how they arrived at this conclusion, based on his type of cancer and his death date. From what my husband's oncologists told us and from all that I've read about his uncommon bile duct liver cancer it is a very slow-growing carcinoma and symptoms are easily confused with GI pain and discomfort and for these reasons it is considered a "silent" cancer and is so insidious that it's not usually diagnosed until stage 4 when nothing can be done. That certainly does not mean there is no disabling pain in earlier stages of the cancer; nor does it grow to stage 4/final stage and extinguish life in only a six month period. My husband's oncologist believed at Stage 4 diagnosis last October 4th that my husband's prognosis was 3-6 months, based on his experience and expertise; however, my husband died only 17 days following Stage 4 diagnosis; therefore, I believe his cancer disabled my husband long before last April. He was too weak to lift a box in Dec 2013/Jan 2014 and too weak to lift a shovel in March 2013 when we always mulch our yard. His oncology team does not believe his cancer metastasized to his bone and was not the culprit of his t-12 fracture. We presume my husband broke his t-12 vertebrae in some outside activity, likely target shooting, in the early half of 2014 due to his progressive inactivity/inability to move normally as 2014 progressed. To me, his fracture begs the question how much disabling pain was he already walking around with, experiencing from cancer in the first half of 2014 not to even notice or identify a very specific back pain from a broken vertebrae that certainly causes some level of noticeable pain for anyone?

Shouldn't SSDI have doctors and/or be consulting with oncologists with expertise for the specific cancer case they investigate and determine? And, if so, should they not realize that my husband's cancer is a very slow growing, insidious type and did not simply onset in April 2014 and quickly reach Stage 4 at his Oct 4, 2014 diagnosis and kill him Oct 21, 2014???? As his oncologist told me, my husband suffered quite a long time before his diagnosis/death and was extremely stoic. Regardless of when his diagnosis was made, and how stoic my husband was in dealing with his pain, is it not reasonable to still conclude that my husband's onset of disabling cancer actually began in late 2013 and certainly no later than XXXXXXX 1, 2014?
doctor
Answered by Dr. Pranjal Kulshreshtha (29 minutes later)
Brief Answer:
All conclusions are logical but difficult to prove

Detailed Answer:
Hi.
I have again gone through the entire history. All your conclusions stand the test of logic. But to pinpoint as to when the cancer must have started in his body is purely conjectural.
No oncologist or doctor will be willing to commit that the cancer in his body started in 2013 and not 2014 as there is no way to be certain. This is because while most bile duct cancers are slow growing, around 10% of them are poorly differentiated or aggressive and can rapidly progress to stage 4 in a matter of months. Even the slow growing ones take a variable period of time in different patients to reach stage 4.
Also, even if the SSDI could be convinced that the cancer started in 2013 (which in itself is very difficult), it would be near impossible to convince them that the cancer was producing disabling pain right from the beginning. As you rightly pointed out, most of these cancers are painless until in the late stage. Mostly they present with painless jaundice. Pain is a late feature.
So, again it will go against you getting the SSD income.
It is also near impossible to predict the time of death. The 3-6 months that your oncologist pointed out was the average for this stage. Some live more or less than this.
I am sure they have doctors in their panel and take opinions from time to time, but even they might not vote in your favor for reasons I have pointed out above.
I suggest you go ahead with the appeal and take it from there.
I hope i have answered all your queries. If there are no more, kindly rate the question and close the thread.
Thank you.
Note: For further follow up on digestive issues share your reports here and Click here.

Above answer was peer-reviewed by : Dr. Vinay Bhardwaj
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Answered by
Dr.
Dr. Pranjal Kulshreshtha

Oncologist, Surgical

Practicing since :2002

Answered : 366 Questions

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Suggest Treatment For Stage-4 Bile Duct Cancer

Brief Answer: They may be right technically. Difficult to prove otherwise Detailed Answer: Hi. Your question(s) have a few technicalities that I would like to bring to your notice. Firstly, I completely sympathize with your situation and also agree that medically speaking your husband was probably disabled by mid 2013. However, the problem is that the SSDI will only take conclusive medical proof of a condition that fulfills their criteria of disability as eligibility for SSD income, in this case cancer. As far as I have gathered from your descriptions, although your husband was in severe pain and discomfort by late 2013, there was no medical proof of the cancer at that time. The proof of cancer came only in April 2014 with the MRI and biopsy. That is why the SSDI are saying that he became disabled in April 2014. So, technically, they are right since before that there was no medical proof of the cause of his pain and discomfort. If you do want to fight it out, the only things that you can use as argument in your favor are-- 1. the cancer was diagnosed in stage 4 which meant that the cancer must have been in the body for quite sometime since cancers dont start in stage 4. It must have taken anywhere from 6 months to an year for his cancer to reach stage 4. 2. The T12 vertebra fracture must also have occurred due to the cancer spreading to the bone and destroying it. That also must have happened over a period of time. Also, his pain could be attributed to the fracture and the pain had been there for sometime. So, to summarize, the SSDI are right technically, but you have a few points in your favor on which you can base your case. Rest is up to how the court sees it. Hope this answers your question. If you have any more, I would be happy to answer them. Thank You.