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PET Scan denied by Insurance - still waiting....

RoxysDad
Posts: 11
Joined: Apr 2012

Hello everyone... Well, Dad's insurance denied the PET Scan ordered by his oncologist. So, now we wait....

With his pain meds doubled, and an appointment this Thursday with the oncology radiologist - for palative treatment - it is hard to keep a happy face. Dad has good and bad days; bad days - he only leaves his chair to use the restroom. Good days, he is able to do some daily activities while keeping his pain below a 5.

He also has begun to have bloody sinus mucus (I think due to the high doses of pain meds). His PCP ordered an x-ray of the sinuses... haven't seen those results yet.

Daddy has also had several episodes of coughing, for an extended time period. Where he has trouble regaining his breath. These episodes are extremely painful for him and he has even said, "take me to the hospital" during one episode. However, it seems once the coughing stops and he is able to regain his breathing - his pain is high - but he no longer want to leave the house. What an emotional rollercoaster this is becoming.

A heartbroken Daddy's Little Girl,
Roxy

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Roxy,

I am sorry that your father's condition seems to be declining. You may wish to research the symptoms surrounding the final stages of late stage prostate cancer so that you and your family are prepared for all eventualities. Having recently suffered the loss of a terrific father-in-law (not PCa related) I have great empathy for what you are going through now. You may wish to investigate hospice care which will focus on making your father as comfortable as possible. My FIL was on in-home hospice and it made the last eight months very workable and helped all of us prepare for his eventual peaceful death in his own bed.

The radiation to relieve pain caused by mets is often very effective and I hope it is so in your father's case.

On a more pragmatic note, this is probably a good time to gently remind your mother to make sure your father's will and last wishes are understood and addressed properly.

I do hope the situation improves soon.

All the best.

K

mrspjd
Posts: 688
Joined: Apr 2010

R,

You deserve some answers about what is going on and your dad’s doctors have a responsibility to be open and honest with him and your family. I wonder if it's possible that mom & dad are trying to "protect" you and spare the details. What are his PCa oncologist and the emergency room docs telling him/you/mom? Is seeking 2nd opinions an option? Most importantly, what does dad want to do? Perhaps requesting and speaking with a social worker might be helpful. This may be premature until you have some solid answers, however, end of life decisions are never easy for the patient or the family. If or when dad & your family decide to have that discussion with his doctors, there are a few websites about hospice and advanced/end stage cancer that you may wish to visit, including an important one from the ACS. I hesitate to post those links now but, if you’d like them, please LMK.

Wishing you peace and comfort during this difficult time.

M

VascodaGama's picture
VascodaGama
Posts: 1528
Joined: Nov 2010

Roxy

I am sorry for the negative answer by the insurance company in financing the PET scan. This test is not cheap ($K) but you may explore with his doctor for a possible inclusion on a clinical trial.
Here is the link;
http://clinicaltrials.gov/ct2/show/NCT01304485

I read about the test being done at Phoenix AZ (investigating C11-Acetate PET/C) under the hospices of Dr. Almeida. A call to him may help you in finding more details.
http://www.azmolecular.com/staff.html

In another forum he says this;
“…Like C11-Choline, this PET radiopharmaceutical has been shown (in Europe) to be very good at detecting recurrences with fairly low PSA values. The mechanism of how the C-11 Acetate and C-11 Choline work is believed to be due to increased incorporation into the lipids (fat) of cell membranes, a process which is increased in certain cancers like prostate cancer. At least one prior study with head-to-head comparison found these agents to be entirely equal. There are some minor nuances between the two agents which we feel make Acetate slightly better - and we will see if this holds true as we continue with our study. These agents are not new and there are others being looked at, but interest in use for prostate cancer has more recently spiked, mostly because targeted radiation therapy and other directed therapies can now get to small recurrences and the information from the C11-Acetate studies can be key in localizing these. Interestingly, there are lots of urologists, oncologists and radiation oncologists in the US which are not yet aware of these agents and what they can and can't do. We are trying to help with this educational process.
Neither PET with C11-Choline or C11-Acetate are covered by insurance or Medicare at the moment and so unfortunately there are usually some costs involved. We have however had a few patients whereby insurance did pay for it, and we work with each patient to see how we can best provide the imaging…”

I believe that your father’s doctor wants to assure that PCa is only in bone, and, therefore, that your dad’s case may benefit from certain targeted medications. PET C11 may demonstrate positive findings.

The broken ribs found recently may be due to bone loss. This is a condition typical of patients on continuous hormonal treatment for long periods. Your dad only now has started on bone medication (Xgeva) which may bring him some relief. I still insist that he should get a bone densitometry test to check for osteoporosis levels.
Xgeva will address the problem with the osteoblast but your dad may need to get supplements of vitamin D. Inquire with his doctor on the matter and get it tested. Remember that Xgeva got its own side effects particularly on Amenia problems. Check the lipids constantly.

Here are recommendations for handling bone pain; http://www.boneandcancerfoundation.org/pdfs/Pain_2011.pdf

I sincerely hope that your dad improves his condition and satisfies his wishes in a ride on a Goldwing.

Wishing you and your family peace of mind.

VGama

For the ones wanting to read your story here is the link;
http://csn.cancer.org/node/239231

RoxysDad
Posts: 11
Joined: Apr 2012

We spoke with Daddy's oncologist and they are petitioning the insurance company for reconsideration of the PET Scan. Daddy has an HMO plan from his auto industry employer of 40+ yrs along with Medicare coverage. So, here's hoping they can make it happening.

Daddy has had regular bone scans and has been on a calcium and vitamin D3 supplement since starting HT. So, in my humble opinion, I think daddy's oncologist was caught a little off guard with his broken bones and mets. Dad's blood work did not follow the typical PCa characteristics; his PSA marker is still at 0.01.

Complicating matters in Daddy's medical history are: massive heart attack in '86 (we almost lost him) - had a quadruple bypass in '87. He has also been diagnosed with congestive heart failure (back in '07-'08; he had one additional stent placed on a previously blocked artery) and is on daily diaretics to manage water retention and herbal supplements like red rice yeast. His cholesterol is within normal range and no statins are Rx'ed. Plus, he the proud owner of a titanium ball and hip socket...

In addition, he is scheduled to have his AUS 800 valve turned on tomorrow. Wow! A lot has changed in our life in the past 8 weeks.

Questions are swirling in my mind. I will be asking many including: when was the latest bone denisty test administered? results? next test?
If the PET Scan is denied again, will we still proceed with Chemo?
Will the Chemo help with his pain?

As always.. thanks you guys for all the great information. I will be after his appts on Thursday to give you an update.

Take care and God Bless you all!
Daddy's Little Girl (aka Roxy)

VascodaGama's picture
VascodaGama
Posts: 1528
Joined: Nov 2010

Daddy's Little Girl

I believe that his oncologist is doing the right think. I would follow his recommendations and advance with chemo even with no PET scan. Apart of that, chemotherapy can kill some of the prostate cancer cells in the metastasis and thereby reduce the pain.
See this link;
http://www.prostatecancer.ca/PCCN/Prostate-Cancer/Treatment/Chemotherapy

Nevertheless, you could discuss with his doctor and certify if your dad would not benefit from a second-line hormonal drugs such as Zytiga. This can be administered before the chemo and is now available in clinical trials.
What may be puzzling is that there will be no marker to evaluate success. Your dad’s cancer may be of the type that produces no PSA, which leaves him with the need to have access to image studies.
Pain would serve as an indicator too on the treatment positiveness. The bone densitometry (DEXA) will also serve to evaluate bone health and a powerful 3 Tesla MRI can give details on any metastases in organs.

I wonder if the insurance would accept a Na F18 PET/CT bone scan that has been in practice already for a few years.

Hope for the best.
VGama

RoxysDad
Posts: 11
Joined: Apr 2012

We met with the Radiation Oncologist today.

Outcome: Tests ordered for Daddy are 1) a bone scan and 2)an END (to check and possibly biopsy the thickened esophagus lining.

The Doc is recommending Daddy start radiation treatments to his spine (T6-T12 approx.) for pain relief. He will begin radiation treatment early next week and they will last 10-15 days. Because Chemo and radiation cannot be done at the same time, the primary focus in getting Daddy’s pain manageable and then try chemo, if necessary.

I asked about the bone denisty and the nurse said he had one on file from '09 and that was not a concern at this time. However, with the Xgeva started she said Dr. B (surgical oncologist) may order one a later date.

The Doctor also recommended trying a Lyriacol (sp?) in conjuction with his current pain meds - stating they "work together" and have shown promising result for people with neurological issues (not sure Daddy has this... but ) like fibromialga, lupus, etc.

More History:
at diagnosis: Gleason 7 at biospy with a 17.0 PSA
post prostectomy - Gleason 6 with 19.0 PSA (not sure why the reports show these different?) Do they take new samples when they remove the prostate?

July 2007 - recurrent PC; mass was palpable via rectal exam - biospy done - Gleason 8

Here's hoping we get some pain relief for Daddy - so he and Ma can get in that Goldwing ride.
Hugs & Love,
Daddy's Little Girl (Roxy)

VascodaGama's picture
VascodaGama
Posts: 1528
Joined: Nov 2010

Daddy's Little Girl

Can you call the hospital and get the results of your dad’s densitometry of 2009?
I absolutely disagree with the nurse’s comment “ that the test is not a concern at this time”. Quite the contrary, your dad got bone metastases and any information with regards to his bones is vital for medication and treatment. In any case you should hold a copy of all the results along his journey of treatments.
Xgeva results will also be evaluated by comparing the results (before administration against after). PSA seems not to be reliable in your dad’s case.

It may be right to suggest you to get second opinions on the developments. Your dad needs an experienced oncologist not a surgeon/urologist. Targeted medications like denosumab (Xgeva), needs constant vigilance, and I recommend your dad to get the lipids checked. I never heard of Lyriacol .

Hope for the best.
VGama

mrspjd
Posts: 688
Joined: Apr 2010

From your description, daddy’s doc (hopefully, a PCa oncologist) may have Rx’d Lyrica (Pregabalin) vs “Lyricol?” for pain. If so, you may wish to read up on it since recently released info found that a placebo worked as well as Lyrica in certain cases. Also, ask the doctor and the pharmacist to check that there is no potential interaction with other drugs your dad may be taking.
http://online.wsj.com/article/BT-CO-20120504-707994.html
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000327/

As previously suggested on your other thread, a bone density test using either a DEXA scan or a QCT is now overdue (last one in ’09). It’s especially important, not only because he’s started Xgeva but also because of the bone fractures you wrote about. A knowledgeable PCa onc will compare current bone density test results against those from ’09 and look for/rule out osteopenia or osteoporosis (reason for dad's hip replacement?) which may be compounding the pain from bone mets. Current QCT or DEXA test results will be used to track your dad’s progress with Xgeva when follow up bone density testing is done again in another 2-3 years.

Hope the current RT txs help to mitigate the pain and the f/u chemo goes well. Best of luck.

RoxysDad
Posts: 11
Joined: Apr 2012

It has been a little crazy with appointments and what not. Thanks for hanging in here with me... here's the latest. Some good news. Some bad news.

After meeting with the radiologist again on 5/8/12 (remember Daddy had a REALLY bad experience with RT in the past), we collectively decided to try a nerve block first (which required another appointment with yet another doctor) before we pulled the trigger on RT. This was partly due to my parents opinion of all RT (They are having a hard time seeing this new suggested RT Tx as a good option; even with all the solid information out there on how this could really help Daddy's pain) and the fact we still do not know for certain if the bone mets are from the prostate cancer or another primary cancer. As the NEW bone scan (5/7/12) was 'not that impressive' according the radiologist. He was expecting more 'hot spots', but the only spots really glowing were 2 spots on his spine - one in the thorasic area (T6 - T8 area) and one in his lumbar area (L4 - L6) and of course, the 4 broken ribs lit up like fireflys in the summer night sky -- all neatly in a row.

*** So very frustrating. ***

Met with Daddy's neurologist this morning; who performed Daddy's nerve blocks when he was having the RT back in 2007. And subsequently did a spinal fusion on 2 of Daddy's discs. Based on Daddy's uncontrolled pain - he rates it anywhere from a 7 to a 15 any given day of the week (NEVER under a 5) -- with today being a bad day at a 12 and his Rx meds for pain are currently: 1) Percocet 7.5mg (4x a day); 2) Fentanyl Patch 50mg (new every 3 days); 3)Gabapentin 100mg (3x a day); and 4) Aleve for breakthrough pain; we decided on a Fentanyl Pain Pump to be installed first thing Monday morning - directly into his spine. I believe the plan is to get him off all the 'other' stuff and just have the pain pump. This seems bad... right? A pain pump? I am getting more worried with each passing appointment.

The END of his esophagus is not scheduled until 5/24/12...

--- Deep breathe Roxy. ----

On to the good news. His AUS800 is working great, no more leaking. And I had been in touch with a charitable organization in our county that will be able to assist my parents with Daddy's cancer 'expenses'. Even as far as to pay for the PET scan that his insurance denied! Praise God! We are working out the details and will need more appointments for all this --- but maybe, just maybe we will have some answers.

Keeping my chin up and hoping to see my Daddy feeling better soon.
With love,
Daddy's Little Girl (Roxy)

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