HealingWell
Search Close Search
☰

Prostate Cancer, fear, and anxiety

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
12 3
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/4/2011 11:41 AM (GMT 0)
I am about 2 years out of radiation treatment (25 external Tomo and 2 internal HDR). In three months the psa went from 7.9 to 2.6. That is the lowest score I have had so far.

The medicals keep saying I am having a PSA/radiation Bounce. about 16 months out I started to bleed with incredible pain. The medicals keep saying it was residual radiation working out of my prostate.

By December of this 2010 the PSA was 6.0 and my urologist kept saying he felt it was a bounce. Shortly after that I had a miserable UTI and my bladder shut down and ended up in the ER getting a catheter put in with the order to get it out ASAP. Being the holidays here, and the urologist on vacation, the catheter was left in about 11 days. He insisted I wait till he came off vacation. His office had another urologist but he didn't want me to see him. So, I waited. Had the catheter removed and was sent home. By 3 PM I was in trouble again. Called the office and was told it would straighten out. It didn't and by 10 PM I was in the ER again getting a catheter placed. The next day I went back to the urologist, he removed the catheter, showed me how to do it myself. Prescribed Xanax and sent me home. Had appointment for two days later. Made that but he wasn't there, his associate (the guy he didn't want me to see) was there and did the interview. Things seemed to settle. The urologist shut down on me and I decided it was time for a second opinion. He was starting to turn sarcastic and bordering on hostile. Ordered a 1800.00 USD test and never told me about it. Got very frightening.

Got a new urologist and he went over my records and felt I needed to wait a bit before any determinations were made. Made an appointment for early April and wanted another PSA. So, thinking things might be better, I had the PSA test done two weeks before the exam to be sure it was in my doctors hands. (I will never do that again). The score came back at 6.08. Nothing has changed.

Fear and anxiety has set in and it is not pleasant. My insurance went away when they decided to raise it to 1200 a month. Trying other carriers, I got quotes from 650.00(government backed) to 2000.00 a month. Out of my league.

So, here I am, no insurance, wondering if there is a test that might be somehow definitive that isn't going to cost thousands of dollars.

Needless to say, the fear and anxiety are wearing me down.
Posted 4/4/2011 5:54 PM (GMT 0)
I don't have any answers. I gather yu never had surgery? Seems the urination issues could be due to the radiation or cancer.

Can they do any imaging?

No insurance is a difficult situation. I gather you are too young for Medicare? What about Medicaid? Also, I know some states have high risk insurance pools. Perhaps look into that.

Some companies offer catastrophic plans (check out Assurant, formerly Fortas). It would be a very high deductible and I'm not sure about pre-existing conditions.

ObamaCare has that covered, but it won't kick in until 2014.

Tough tough situation.

Perhaps othes have some ideas.

Mel

Posted 4/4/2011 6:16 PM (GMT 0)
As long as the PSA remains stable, perhaps it is OK as your urologist said. That means whatever it is, is not getting worst.

My friend's PSA after Salvage Radiation Treatment went up from .xx to 1.0 in a year. He worried but his Urologist told him not to. It has stayed at 1.0 for the last 6 years.
Posted 4/4/2011 6:58 PM (GMT 0)
Hello hlc,

I am assuming you had radiation as primary treatment. That was my mode as well but I had hormone therapy, single agent, concurrent with the radiation. You so not say if you had IMRT/IGRT but again I would assume this is the case. As for the rise in PSA I am in the same situation 30 months out. See signature. The 2.0 nadir is not that good. Did you have any interim PSA tests? Typical is three months after completion and six month intervals thereafter.

As for the hostility you encountered let it roll off of your back and make the doctor answer the question to your satisfaction. It is your life and his income. Value your life more than his income.

My last follow up my PSA was up more than doulble the previous reading. But, you  can experience a bounce as far out as three years. Another "rule of thumb" is to look at the trend. Three increases in a row can indicate recurrence. Also, you need to keep in mind that you still have a prostate and there may be viable tissue that puts our PSA. As previous posters stated look for the PSA to stabilize. That's what I am hoping for in my case.

Like you I have no insurance and have paid my expenses out of pocket. Policies I have found are expensive and only available under state mandate and do not cover poop on the medical costs. High deductible and copay. Cheaper to stay uninsured but I guess I will be a criminal soon if I continue to do that.

Do not know what to say about the fear and anxiety. At least PCa is a slow reacting disease. Have you considered or has HT been recommended to you by any of your doctors? If not you may want to make an inquiry. There are a number of patients who have responded well to the HT and for and extended period of time. One individual on another forum I visit was diagnosed in 1999 and went through the "full monty". RP, RT and HT intermittent and has been enjoying a good quality of life for the duration. HT was what finally got his disease under control. Don't lose hope.

Best to you,

Don

 

Posted 4/4/2011 7:37 PM (GMT 0)
In December I had a FISH test, Catscan and Xray and all were listed as clear. In February I had the bladder scoped and the doctor feels that was clear as well.

My state doesn't believe in assisting folks with pre-existing conditions. The Gov't has a PE program but the fees are beyond my capabilities at the moment.

Some of the other insurance companies won't look at me until I am two to three years out of treatment. I am not old enough for medicare and medicade doesn't feel it can help either.

Tried a health indemnity program and that turned out to be a money maker for the company but they were miserable to deal with, didn't negotiate prices worth talking about and paid very little of the fees.

It seems I have found all the cracks and crevices of health care today.

My next appointment is on Wednesday. I have started a list of questions but if anyone has any suggestions about what to ask I certainly will entertain the ideas.

Seems I find myself in that space between a rock and a hard place.
Posted 4/5/2011 12:38 AM (GMT 0)
Sorry to hear about the PSA and insurance. A double whammy. Are you a veteran? If so the VA might be able to help. Keep us posted.

Michael

 

Posted 4/7/2011 1:18 AM (GMT 0)
Had my meeting with the urologist today. The word is that there is no word. He wants another biopsy. The last one was around 2500.00 with the lab stuff. He cautiously thinks it may be radiation irritation but won't make any calls until the biopsy is done.

Will this ever end.
New level of anxiety reached and exceeded.
Posted 4/7/2011 1:42 AM (GMT 0)
This is very tough, and I don't have any aswers for you. Only thing I can say is, trust your urologist and take one day, one hour, one minute at a time. There are two processes going on here, the cancer and the anxiety. The first you can't do much about, but the second one is within your power to control, even if you can't get rid of it.
Posted 4/7/2011 3:22 AM (GMT 0)
Here is a link to financial resources for prostate cancer patients, given to me by a friend. I hope this information helps.
http://www.pcf.org/site/c.leJRIROrEpH/b.5856497/k.F968/Financial_Resources.htm
Posted 4/9/2011 1:53 PM (GMT 0)
Went to see my oncologist yesterday in hopes of finding a silver lining. He is considered one of the finest oncologists in the area, highly decorated and well respected.

He was not able to offer me any hope yesterday.

I have been told there are three options.

1 - this is a psa bounce which seems to have plateaued, if the psa goes up on the next test (in four weeks) then we move to the next option
2- option 2 is that there is cancer in the prostate or
3- option 3, the cancer has moved outside the prostate

Reading between the lines, option 1 is marginal at best. They are thinking opt 2 or 3 are possibilities.

They have referred me to community health for future treatments. In short, I am being thrown to the street. At best I might get 2nd class care if they can or are willing to accept me. At one point a financial person at the hospital referred to it as indigent care. They tore my heart out and stomped on it.

I have worked my entire life and paid taxes, purchased insurance for healthcare, paid my bills and now find myself a throw away person.
Posted 4/9/2011 3:56 PM (GMT 0)
HIC:

What a miserable situation. With this economy and unemployment situation, MANY folks will lose their health insurance along with their jobs. Meanwhile, political groups fight ObamaCare tooth and nail.

You are right. You and many others are getting thrown to the wolves.

OK, end of my vent.

Did they mention what the next step would be if it is either #2 or #3?

Mel

Posted 4/9/2011 6:52 PM (GMT 0)
They would have to evaluate which option applies and then outline a course of action based on that. But it would tend to be either radiation or chemo. Worst case might be a salvage operation to remove the prostate but I guess that can be a tricky operation since it has already had radiation.

Trying not to make to many decisions at this point but there are times it just seems a bit overwhelming.
Posted 4/10/2011 4:11 PM (GMT 0)
to answer some earlier thoughts.

Assurant Health. they were my provider until the cancer. When they proposed the renewal the premium went to 1200 a month (according to the agent).

Where I live made a choice to not participate in the PE insurance program....the premiums for me started at 650 a month and other insurance quoted up to 2,000 a month but they won't take me until June and some want to wait until a year from this June.

I have gone through a health indemnity program and found that I was funding their profits while they were giving me back very little. I found that they didn't negotiate the costs well and were not inclined to work at much of anything. I was lucky to get discounted 15%. With the ER visits, the negotiated nothing off the bill. So, the money they got is now going to pay the ER bills, which are rather substantial.

I have contacted a cancer assistance group and they are even worse at negotiating. When I told them where I lived, they said that they had no luck with reduction of hospital fees in my area. Didn't give me a lot of hope. So, I am plugging along hoping for the silver lining to show up.

In the meantime, I am not sleeping.....6 hours in the last three days. Food is becoming an issue and self esteem is really suffering a huge blow. Had someone the other day tell me to just deal with it. That was from my mom.
Posted 4/10/2011 6:22 PM (GMT 0)
This is a lousy situation.

These insurance companies are not going to cooperate.

How is your job situation?

Is there any job possibility with health insurance benefits?

Mel (grasping at straws, I guess)

Posted 4/10/2011 6:54 PM (GMT 0)
self employed.
Posted 4/10/2011 7:02 PM (GMT 0)
 

By any chance do you live within driving distance to one of the large research/learning institutes such as Mayo, John Hopkins, Sloan Kettering, Cleveland Clinic, etc.? They might be able to provide you with some assistance through the programs they have.

 

Post Edited (mr bill) : 4/10/2011 2:07:30 PM (GMT-6)

Posted 4/10/2011 7:32 PM (GMT 0)
Hlc,

I am also uninsured and was at the time of my treatment. I p$#@d off the hospital when I demanded a reduction in costs. They finally agreed to 10% for cash and upfront payment. I did the same with my urologist and radiation oncologist. Urologist discounted 30% for HT and RT. Radiation oncologist charges me at medicare rate. I told him I could afford more but he has never asked for more in the billing. Did not fair as well with pathology. The discussion of cost is a real sore point with the medical commuity in general and they get rather defensive when the subject is brought up. My uro made the statement that the radiation machine cost $3MM and needed to be paid for. I noted that yes, that is true but not all of it by me. :) The hospital all but flat out refused to give me the rates for their services and acted as though it was a mystery to them. As though the bill was derived from a weejee board.

Now here is a tid bit that will really get you boiling. Insurance companies not only establish what they will pay for a given procedure but also establish what a hospital contracting with them will charge an uninsured patient. The rate for unisured can be 2.0 to 4.0 times as much as insured. Hospitals are barred from offering the same discount to uninsured as they offer to insured. No one but the unisured pay list price for medical services.

You need to speak up and do not be embarrased to ask for the discounts. If they say no you will be no worse off than you are now.

On the cost of the policy my experience has been the same as yours. Single patient plan, no family, $9000/yr premium, $5000 deductible before insurance pays, and 40% co pay on covered procedures. The existing condition provision is waived under the state mandate plan which is what I would be going under. Just gaurantees that I will pay at least $14,000 more per year than I do now for the same service. I did not spend that much this past year.

Hlc, I wish you the best of luck going forward and know the extra strain of having to deal with financial side of this disease as well as the emotional and physical strains.

Don
Posted 4/10/2011 8:54 PM (GMT 0)
I have been working some deals with one of the hospitals but the other will not budge but going to call their patient advocate tomorrow or Tuesday and see what can be done. Oncologist was wonderful. Urologist is working with me

Contacted a big cancer medical center that is about 60 miles away to see if they had any research programs going on. Would move in with my sister if needbe. She is about 15 miles from the facility.

Urologist has referred me to a facility that works under the public hospital here to assist those who are now running out of everything. I hope to hear something on that this week.

Not old enough for medicare but am going to see about medicade again, things change. Also going to look into SSI. At this point I will try anything. I am now thinking the worst thing that could happen is they say no. Heard that before. Worse comes to worse, I could die, but, I am going to do that at some point anyway....maybe just a little sooner than would be desired.

At the moment the doctors are gearing up for bout of testing. I think they are suspecting that I am having a flare up of this cancer. There is still a chance that it is a PSA bounce but becoming less likely as time goes by. The doctors are already talking biopsy, bone scan and CAT scan. The one option they forget is that I have the option to do nothing and let it take its course. I could save a lot of money and take care of my bucket list.

Post Edited (hlc1948) : 4/10/2011 3:07:06 PM (GMT-6)

Posted 4/12/2011 1:18 PM (GMT 0)
Getting uglier by the day.

Went to the Sr. Friendship Center yesterday and they have assigned an oncologist to me and I have my first meeting next Wednesday. Still waiting on the Community Health program but they review only on Wednesdays. So have a wait going on there. They are talking about Lupone Therapy which I know so little about. I think it is pretty much summed up with the exception of the crying.....the cancer may well be back.

Both doctors, in a subtle way, kicked my butt to the streets. (can't make money with me, get me off the books)


There is talk of putting me on medicade now, I suppose that is good. Have several appointments to make.

Pretty much on the edge of panic, one more time.

I really do need a break.
Posted 4/12/2011 4:10 PM (GMT 0)
hlc1948,

Were you able to get anything from the link Reachout posted for you? There just has to be an answer for you, and at the least some option for free or low-cost counseling for your depression and anxiety.

I wish we could help, but please know that I care. I will follow your postings, and hope so much that others can come up with ideas for you. Severe financial stress on top of serious health issues is just awful to bear.

Juliet
Posted 5/15/2011 12:09 PM (GMT 0)
Well, it gets curiouser.

Have been accepted by a local health organization affiliated with the hospital that "helps" folks in my situation.

Urologist wants to get on this immediately so of course he is waiting 2 months to see how things are going. Latest PSA is up almost a full point in five weeks.

Have a therapist in New York who I can talk with on the phone. She specializes in cancer patients.

Have appointments with urologist and GP this week. Oncologist next week.

Emotional side is not doing well. Best response I have had so far is from the oncologist. He thinks I just need to "deal with it". He pissed me off on the last visit. I get the feeling he isn't being up front with me and hoping I will just go away. How dare I question his god like authority.
Posted 5/15/2011 8:57 PM (GMT 0)
My advice on the cancer front, is at some point soon, make the call yourself that this is indeed, not a bump, but a genuine reccurence, fly away, rocket away from any urologist who would biopsy a prostate that has been radiated, to see what?, that you have cancer?. Get A urologist that will prescribe the basic HT drugs at a reduced cost, no consultation, no advice , no doctors " wisdom " and , I can't believe Its got to this, but be your own physician, using info you glean from sources like this, and by God treat yourself!. IMO, you need some kind of Hormone therapy. As purgatory says,in other posts, on his own situation, quite frankly, we all know the next step is HT, start it with the advice of people here, these HT guys know there stuff. even orchiectomy, which seems like in long run would be cheaper. This may sound extreme but......
Monitor your self with the cheapest blood test you can get. Crazy, maybe, but in the final analysis in this crazy world you may just , with the help of others, have to take care of it yourself. Get in touch with OhioState,who is very generous with his considerable knowledge on this issue, to those who choose it. On the other, anxiety ,IMO its all about faith, hope, and charity. Best wishes and Good luck! Plz keep us in the loop, on any issue that comes up on the road ahead. BTW, you certainly would not be the first who has taken this approach in the PCA world, including people with mucho resourcses,like Don Imus, who basically treats himself with hot peppers, Face, from A team, cured himself with
macrobiotic diet, tho I actually think he may have had an indolent PCA. When you have ltd resources there are ways around them. Its just a whole lot more difficult, than, the " lucky " ones that do have the resources.
Posted 5/15/2011 9:06 PM (GMT 0)
Also Hic1948, as Jules from Pulp Fiction said," try , try real hard", not to get angry, getting into blame game, this and that type of negative emotions and go forward , head high, focused , no pity party, determined to beat this. A 6 or so psa is not that bad and would be undetectable quite quickly. I mean do you really need a doctors appointment to get an " antibiotic " that we all know works for xxx.
Posted 5/15/2011 10:52 PM (GMT 0)
There is a guy on here, Ohio State, who has been fighting this thing without insurance.

Hopefully he will read this and chime in. Perhaps he has some ideas.

Meanwhile, the right wing classifies Obama Care as Socialist hence bad. Let 'em eat cake, I guess.

This is a sad, difficult situation.

Mel

Posted 5/18/2011 1:50 PM (GMT 0)
Yesterday I saw my GP and he ordered a biopsy of the prostrate. I don't see the sense of that. It is dead.

So, today I see my urologist.
Questions, and please add if you feel I am missing something.

You have had a PSA, so why have you not done a Free PSA, what is my free PSA score?

Why are we doing a biopsy and not looking at the entire body with a cat scan, mri, bone scan, or prostisin scan?

We are going to have a different dialogue from here on in, one that doesn't leave me feeling as though I am going to die when I leave the office.

If the PSA test is such a bad test why are we doing it when there are other tests that are so much more accurate and give real results.

Is hormone therapy an option and what is involved and when do we consider it.

Is it possible this could be chronic prostititis?

When does the concept of a PSA bounce no longer become valid and we start getting serious about what is precisely happening and how to correct it?




Am I missing anything.
✚ New Topic ✚ Reply
123