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Old 09-11-2010, 10:33 AM   #1
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Recently diagnosed, thoroughly perplexed about options

I was diagnosed with PC on August 30th. I'm 44, in general good health. I had very few symptoms and my prostate was always normal by a physical exam, but I got a PSA and it was 4.5 in early July. My PCP sent me to a urologist and his test showed a 4.19 score. He did a biopsy and, of the 12 core samples, all 12 were positive, all 3+3=6 Gleason score.

My 1st urologist sent me to a Dr. who specializes in seed implants and, surprise surprise, he said I was a prime candidate for that treatment.

As I did more and more research, I found the HIFU option, which, albeit unapproved in the U.S., still seems to be some kind of dirty little secret in this whole mix. I thought, why would I want to get radioactive pellets in my body and subsequent radiation, if I can do it more "naturally" with ultrasound? Obviously, this is the least tested option, but it's so easy to think that these millionaire prostate cancer surgeons want to sell you on surgery, or their treatment, rather than something that will not make them rich.

Yesterday, August 10th, I went to a 2nd urologist. He looked at my Gleason scores and PSA, checked my prostate. He said he considers himself conservative when it comes to recommending surgery, but, in my case, says it's the only option for me. So, after being nearly certain I was going to do either seeds or HIFU, he sent me back to square one by making me believe the only real option for me is surgery. For whatever it's worth, he seemed much more sincere than the other urologist I saw, (but actually the 1st guy barely even spoke to me and only mentioned the 3 treatment options and then sent me directly to a seed implant guy).

I do not have any qualms with having my prostate remain inside me if the cancer can be killed there. I prefer not having surgery. My quality of life, (sexual function), is very important to me. I don't want to have my prostate removed if another option is going to give me the same positive outcome.

I also have major insurance issues which make me think waiting 6 months for eligibility for an Illinois State insurance plan could save me tens of thousands of dollars, that I don't have, also. I want the best possible doctor to do whatever I have done and allowing cost to be a factor is not logical when it comes to my health.

Anyone who can weigh in on the different treatment options, your opinion is welcome and valued. Thank you.

John

 
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Old 09-11-2010, 01:42 PM   #2
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Re: Recently diagnosed, thoroughly perplexed about options

Hi John,

I'm glad to see your own new thread, and I'll lead off with some comments in green.


Quote:
Originally Posted by john52il View Post
I was diagnosed with PC on August 30th. I'm 44, in general good health. I had very few symptoms and my prostate was always normal by a physical exam, but I got a PSA and it was 4.5 in early July. My PCP sent me to a urologist and his test showed a 4.19 score. He did a biopsy and, of the 12 core samples, all 12 were positive, all 3+3=6 Gleason score.

Your stage (though puzzling), Gleason score and PSA would suggest you would do well on active surveillance, rapidly being recognized as a prime choice for low-risk patients, but the number and percentage of positive cores is a show-stopper for active surveillance, per current thinking by the major active surveillance programs and published guidelines.

My 1st urologist sent me to a Dr. who specializes in seed implants and, surprise surprise, he said I was a prime candidate for that treatment.

Probably true, though cancer close to the urethra, with those 12 positive cores, could be a problem. Color Doppler ultrasound by an expert could determine that with fairly high reliability.

As I did more and more research, I found the HIFU option, which, albeit unapproved in the U.S., still seems to be some kind of dirty little secret in this whole mix.

It really isn't a secret at all, though that's what professional HIFU promoters often lead us to believe. Far from being dirty, a lot of us had hoped it would pan out, including the medical community. Unfortunately, a surprisingly strong convergence of published medical research results has suggested it is not all that good at controlling cancer. It's possible that there are some HIFU experts out there who really are achieving good results long-term, but there is no evidence of that yet.

I thought, why would I want to get radioactive pellets in my body and subsequent radiation, if I can do it more "naturally" with ultrasound? Obviously, this is the least tested option, but it's so easy to think that these millionaire prostate cancer surgeons want to sell you on surgery, or their treatment, rather than something that will not make them rich.

Personally I'm kind of doubting that the HIFU medical community is dominated by philanthropists. I suspect the docs and staff want to earn a good living as do other doctors.

Yesterday, August 10th, I went to a 2nd urologist. He looked at my Gleason scores and PSA, checked my prostate. He said he considers himself conservative when it comes to recommending surgery, but, in my case, says it's the only option for me. So, after being nearly certain I was going to do either seeds or HIFU, he sent me back to square one by making me believe the only real option for me is surgery. For whatever it's worth, he seemed much more sincere than the other urologist I saw, (but actually the 1st guy barely even spoke to me and only mentioned the 3 treatment options and then sent me directly to a seed implant guy).

Please describe why he thought surgery was the only option for someone with your case characteristics. Based on what you have described, my impression is that objective prostate cancer doctors would strongly disagree with his conclusion. To me, it smacks of a sales pitch.

I do not have any qualms with having my prostate remain inside me if the cancer can be killed there. I prefer not having surgery. My quality of life, (sexual function), is very important to me. I don't want to have my prostate removed if another option is going to give me the same positive outcome.

There is another option that can be particularly attractive for maintaining sexual function, and I'm about to post a new thread about it. It's hormonal blockade therapy as the sole, primary therapy. While desire for sex (libido) virtually disappears most of us for the year to year and a half the patient is on full therapy plus several months for recovery (affects about two-thirds of men in their fifties per Dr. Mark Scholz, "Invasion of the Prostate Snatchers," 2010, p. 147), desire returns for almost all of us. (Dr. Scholz comments that libido is less intense for about 25% of men over age 65 after full therapy, but I'm thinking some of that is due simply to aging.) Unlike sex after the usual major therapies, the quality is virtually the same as before therapy, though the amount of semen is somewhat less.

Hormonal blockade therapy is rarely curative, and that is, naturally, a turn-off for some men. However, it appears to give very long-term control of the cancer in many men, often with just one round of blockade. All therapy options are open after blockade, although some surgeons do not care to operate on post-blockade patients (while others prefer it).

If you are not the kind of guy who has to get that thing out of your body and into a jar, this is an option you should at least consider.

I decided on hormonal blockade as my sole therapy (after being rejected for surgery - thank God! - and deciding not to follow through on radiation. I am now nearing my fifth month in my third vacation from the heavier duty drugs (Lupron and bicalutamide for me), and I've mostly recovered from side effects. I am pretty much capable of what I was capable of prior to my diagnosis 10 1/2 years ago.


I also have major insurance issues which make me think waiting 6 months for eligibility for an Illinois State insurance plan could save me tens of thousands of dollars, that I don't have, also. I want the best possible doctor to do whatever I have done and allowing cost to be a factor is not logical when it comes to my health.

In view of your case, there are pros and cons to waiting. The biggest pro point is the economic one you mention. Another one is the time it would give you to thoroughly learn what you need to know and settle in on a strategy. A third is that better technology would likely be available; sometimes this gets down to confirming (or unconfirming) research that validates something that looks good based on preliminary information. A likely example in the next six months is Stereotactic Body Radiotherapy (SBRT) - basically just a five dose program instead of around forty doses - delivered by CyberKnife or another delivery system.

However, there are some significant negatives. The one that is at the front of the stage for me is the fact that you had twelve positive cores, suggesting that the cancer is fairly aggressive and will continue to grow in the next six months or so. It could grow to surround the urethra, affecting radiation and cryosurgery options somewhat or ruling them out. It could invade or actually penetrate the prostate capsule, making surgery a dubious option. Though unlikely, it might allow time for the prostate to shed the kind of viable prostate cells via the blood or lymphatic system that can produce viable metastases. (You have most likely already shed prostate cancer cells in your blood and probably to bone - most newly diagnosed patients have, but chances are strong that they aren't the kind that can cause trouble.)

You could try some low-key tactics to hold-down, stabilize, or even reverse the cancer. It is thought that the mild drugs Avodart and finasteride can help, and finasteride is now available as a generic. Quality pomegranate juice and extract is looking good to help our cause. Quality vitamin D3 appears helpful. So do a number of other nutrition/diet/supplement, exercise and stress reduction life style tactics. While needing some updating, there's information about such tactics in a thread titled "Nutrition & lifestyle tactics - books, resources and a quick summary," initially posted on March 6, 2008.

My gut feeling is that you do not need to rush to a therapy decision and treatment, but you should not dawdle either.



Anyone who can weigh in on the different treatment options, your opinion is welcome and valued. Thank you.

John
I'm very impressed with the chapters I've read so far in "Invasion of the Prostate Snatchers." It looks like an excellent orientation and navigating guide for newly diagnosed patients (and a resource for the rest of us). "A Primer on Prostate Cancer - The Empowered Patient's Guide," is outstanding, including a wealth of informative graphics, photos, and charts. These books will help you choose your medical team and put you on a more equal footing with them.

Take care,

Jim

 
Old 09-11-2010, 02:40 PM   #3
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Re: Recently diagnosed, thoroughly perplexed about options

Here's a link to a good overview of the treatment options:
http://www.cancer.gov/cancertopics/pdq/treatment/prostate/Patient/page4

Like you, my biopsy showed Gleason 3+3 cancer in 11/12 cores. Based on that, I ruled out Active Surveillance and focal therapies like HIFU and cryo. On Prostatectomy ... It's sometimes called "the gold standard" because there are many years of experience and recurrence rates are the lowest, and they can examine the prostate afterwards for any cancers that may have broken through. However, like you, I didn't mind not having the assurance that the prostate was all gone, and didn't like the odds of acute and late term urinary and erectile dysfunction. Traditional radiation, IMRT/IGRT has similar outcomes. The outcomes of ALL of these depend on the skill and experience of the surgeon or Radiation Oncologist. There are now variations of IMRT, like tomotherapy, that deliver the dose more precisely, avoiding surrounding organs. However, the more common side effects (urinary, erectile) occur within the perimeter of the organ.

For me, that left the other popular forms of radiation: permanent seed brachy (LDR), temporary seed brachy (HDR), protons, and hypofractionated SBRT. As I studied the issue, it seems like the kill rate of PCa cells is higher when bigger doses are delivered in fewer sessions (this is called hypofractionation) than when they are spread out over a longer period. That left me with HDR brachy and hypofractionated SBRT. Brachy seemed to irradiate surrounding healthy tissues more and have worse side effects. So I settled on hypofractionated SBRT, which is often known as CyberKnife. It has sub-millimeter accuracy in delivering the dose only to the prostate. So far, urinary, rectal and sexual problems have been low-- but there is only three years of data. Also, it's only 5 treatments.

With surgery, urinary and sexual side effects are usually worse at first (but may be delayed a bit.) They have to cut through and re-connect the urethra. No matter how nerve sparing it is, whether DaVinci or open, many nerves are "traumatized" and branches are cut off.

With radiation, one expects those side effects to start off mildly but may get worse over time as fibrosis and damage to the blood vessels sets in.

I know the U of Chicago has a world-renowned cancer center and many very experienced doctors. I was lucky in that my insurance covers CyberKnife.

Hope that helps.

 
Old 09-11-2010, 02:55 PM   #4
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Re: Recently diagnosed, thoroughly perplexed about options

Quote:
Originally Posted by IADT3since2000 View Post
Hi John,

I'm glad to see your own new thread, and I'll lead off with some comments in green.




I'm very impressed with the chapters I've read so far in "Invasion of the Prostate Snatchers." It looks like an excellent orientation and navigating guide for newly diagnosed patients (and a resource for the rest of us). "A Primer on Prostate Cancer - The Empowered Patient's Guide," is outstanding, including a wealth of informative graphics, photos, and charts. These books will help you choose your medical team and put you on a more equal footing with them.

Take care,

Jim
Hey Jim,
Once again a very thorough and insightful response. Thank you very much.

I am currently taking bicalutimide 50mg once a day. If this is a short term option (like for 6 mos.) I would be willing to wait. I know there is one place where they do color doppler in the area, so I will try to get an appointment for that ASAP.

The only reason I can suggest for why the 2nd urologist said my only option was surgery was because of the 12 positive cores. If he saw anything else suspicious in my lab results to make him think that, he didn't say so to me.
As for whether "objective" prostate cancer doctors would disagree, my strongest argument in agreement with that is what the seed implant doctor told me, which is that the implants are the best route for me, although seeing him as objective is difficult.

Part of the reason I even got a PSA test was because my libido was so low, I guess that's a topic for another thread, but regarding hormone therapy's effect on libido, I would much prefer a low libido over impotence.

I will try to find copies of all those books you mentioned. If I have time to research this more completely, I think that will allow me to be more confident in my decision.

Thank you!

 
Old 09-11-2010, 03:01 PM   #5
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Re: Recently diagnosed, thoroughly perplexed about options

Thank you Tall Allen, your case sounds quite similar to mine. Frankly, and believe me, this is a good thing, your discussion of the specific forms of implants and radiation is outside my realm of complete comprehension right now. So, you have given me points to study and ask questions about to my potential seed implant doctor. He says he's done more than 10,000 of them, so experience would seem not to be an issue. However, obviously, I need to get into those specifics of how he does the procedure.

I appreciate your knowledge sharing greatly!

Edit: can anyone give a ballpark figure of how long recovery takes after robotic surgery?

Last edited by john52il; 09-11-2010 at 03:59 PM. Reason: additional comment

 
Old 09-11-2010, 04:44 PM   #6
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Re: Recently diagnosed, thoroughly perplexed about options

Hi John,

Just a few quick notes before dinner.


Quote:
Originally Posted by john52il View Post
Hey Jim,
Once again a very thorough and insightful response. Thank you very much.

You're welcome!

I am currently taking bicalutimide 50mg once a day. If this is a short term option (like for 6 mos.) I would be willing to wait.

Wow! I did not realize that. Bicalutamide is far more potent than Avodart or finasteride, though different in its mode of action. I can explain. Bicalutamide is likely to knock the cancer back on its heels and give you some breathing room. It is a form of hormonal blockade therapy. However, it is not what I would feel most comfortable with long term. Also, patients typically experience breast tenderness and sometimes irritation, and frequently it will cause the breasts to enlarge. There are drugs that can counter that, as well as a short course of radiation, but the latter may have other issues.

I know there is one place where they do color doppler in the area, so I will try to get an appointment for that ASAP.

There are only a handful of docs in the country with the expertise and high-powered equipment to do it well. The nearest to you that I know of is Dr. Fred Lee. I think he's in Minnesota now.

The only reason I can suggest for why the 2nd urologist said my only option was surgery was because of the 12 positive cores. If he saw anything else suspicious in my lab results to make him think that, he didn't say so to me.

To me, 12 of 12 cores positive would be a negative toward surgery, suggesting more likely spread beyond the prostate, and calling for additional staging to tie that down. From my layman's view, you were getting a well-practiced sales pitch.

...
Take care,

Jim

 
Old 09-11-2010, 06:52 PM   #7
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Re: Recently diagnosed, thoroughly perplexed about options

John,
One thing to check out before you decide on a treatment is the ratio of your psa to your tumor size. 12 of 12 cores indicates a very large tumor. There is a standard ratio for the amount of psa per cc that a gleason 6 tumor throws off. You can probably find this on the PCRI web site under PC tools or in Dr Strum's book. On the surface you should have a higher psa. Large tumors with low psa are an indication of a pc varient. I would get a 2nd opinion from Bostwich labs, specify Dr Bostwich look at the slides and also do a ploidy analysis. It's always a good idea to get a 2nd opinion on all biopsy slides from an expert in PC.
JohnT

 
Old 09-11-2010, 07:00 PM   #8
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Re: Recently diagnosed, thoroughly perplexed about options

Sorry to throw so much at you - it actually took me months to get to my final decision.

Just a note on implants (or brachytherapy). There are 2 kinds.

1) permanent implants. These are usually radioactive iodine "seeds" that deliver a relatively low dose. The radioactivity decays quickly to undetectable levels. The seeds are then "dead" radiologically, but are left there because they're too hard to remove. Sometimes this is supplemented by external beam radiation to be more thorough and deliver a higher total dose.

2) temporary implants or HDR. They insert a much stronger radiation source and just hold it there for about 10 minutes at a time, then remove it. It may be repeated 2-3 times over the course of a 1-2 day hospital stay. Nothing is left in you, it is minimally invasive, has very good cancer kill and can avoid much damage to the urethra and other organs.

Sorry to hear about the bicalutimide. I hope you don't have to stay on it too long. I have been taking finasteride for the last five months to shrink my prostate prior to CyberKnife. I figure that the less volume they have to irradiate, the better. However, I'm taking a holiday from finasteride this month to restore my libido. Such a bummer to not feel like yourself.

- Allen

 
Old 09-11-2010, 09:08 PM   #9
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Re: Recently diagnosed, thoroughly perplexed about options

Quote:
Originally Posted by Johnt1 View Post
John,
One thing to check out before you decide on a treatment is the ratio of your psa to your tumor size. 12 of 12 cores indicates a very large tumor. There is a standard ratio for the amount of psa per cc that a gleason 6 tumor throws off. You can probably find this on the PCRI web site under PC tools or in Dr Strum's book. On the surface you should have a higher psa. Large tumors with low psa are an indication of a pc varient. I would get a 2nd opinion from Bostwich labs, specify Dr Bostwich look at the slides and also do a ploidy analysis. It's always a good idea to get a 2nd opinion on all biopsy slides from an expert in PC.
JohnT
Excellent advice, thank you, will do.

 
Old 09-11-2010, 09:12 PM   #10
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Re: Recently diagnosed, thoroughly perplexed about options

Quote:
Originally Posted by Tall Allen View Post
Sorry to throw so much at you - it actually took me months to get to my final decision.

Just a note on implants (or brachytherapy). There are 2 kinds.

1) permanent implants. These are usually radioactive iodine "seeds" that deliver a relatively low dose. The radioactivity decays quickly to undetectable levels. The seeds are then "dead" radiologically, but are left there because they're too hard to remove. Sometimes this is supplemented by external beam radiation to be more thorough and deliver a higher total dose.

2) temporary implants or HDR. They insert a much stronger radiation source and just hold it there for about 10 minutes at a time, then remove it. It may be repeated 2-3 times over the course of a 1-2 day hospital stay. Nothing is left in you, it is minimally invasive, has very good cancer kill and can avoid much damage to the urethra and other organs.

Sorry to hear about the bicalutimide. I hope you don't have to stay on it too long. I have been taking finasteride for the last five months to shrink my prostate prior to CyberKnife. I figure that the less volume they have to irradiate, the better. However, I'm taking a holiday from finasteride this month to restore my libido. Such a bummer to not feel like yourself.

- Allen
Thank you, Allen. The seeds the doctor told me about were permanent. I'll ask about the temporary option. Just started the bicalutimide 3 days ago, I don't really feel any side effects, other than possibly feeling depressed, but that's hard to distinguish from the whole situation and accepting what's going on with my body.

 
Old 09-12-2010, 11:58 AM   #11
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Re: Recently diagnosed, thoroughly perplexed about options

Hi John,

You just wrote:


Quote:
Originally Posted by john52il View Post
Thank you, Allen... Just started the bicalutimide 3 days ago, I don't really feel any side effects, other than possibly feeling depressed, but that's hard to distinguish from the whole situation and accepting what's going on with my body.
You might want to add one of the two "5-alpha reductase inhibitor" drugs - either Avodart (brand name, slightly more potent, more expensive, shorter track record) of finasteride (generic, fairly cheap, long track record) to the bicalutamide.

Either of these drugs will sharply reduce conversion of testosterone into the far more potent prostate cancer fuel DHT (dihydrotestosterone). That's the main effect. They will also somewhat reduce the blood supply to the prostate, including the supply to any tumor cells. Some men are not able to take advantage of Avodart due to their genetic makeup; finasteride usually works fine for such men. Conversely, I had a friend who experienced no benefit with finasteride, but he clearly benefited from Avodart. He probably made a lot more of the Type 1 5-alpha reductase that Avodart targets along with Type 2, but not much of the Type 2 5-AR that is targetted by finasteride. (Finasteride has been an important element of my intermittent triple androgen deprivation therapy for the past ten years.)

Commonly heard advice is that these drugs do not generally add to the side effect burden. Tall Allen's comment on reduced libido with finasteride applies to a minority of men, about 20% (10% probably a placebo effect, 10% real effect), and that can be reversed by stopping the drug. Most of us have somewhat increased libido as finasteride usually boosts testosterone a bit. Sometimes the drug can reduce erectile function, and sometimes it can enlarge breasts, both happening to only a few of us. All but the breast enlargement can be reversed by stopping the drug, as I understand it. Oh, I almost forgot: the most dangerous side effect - growing more hair in the male pattern baldness areas for many of us! That's dangerous because we will have to fend off amorous females!

Take care,

Jim

 
Old 09-12-2010, 03:40 PM   #12
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Re: Recently diagnosed, thoroughly perplexed about options

Quote:
Originally Posted by IADT3since2000 View Post
Hi John,

You just wrote:




You might want to add one of the two "5-alpha reductase inhibitor" drugs - either Avodart (brand name, slightly more potent, more expensive, shorter track record) of finasteride (generic, fairly cheap, long track record) to the bicalutamide.

Either of these drugs will sharply reduce conversion of testosterone into the far more potent prostate cancer fuel DHT (dihydrotestosterone). That's the main effect. They will also somewhat reduce the blood supply to the prostate, including the supply to any tumor cells. Some men are not able to take advantage of Avodart due to their genetic makeup; finasteride usually works fine for such men. Conversely, I had a friend who experienced no benefit with finasteride, but he clearly benefited from Avodart. He probably made a lot more of the Type 1 5-alpha reductase that Avodart targets along with Type 2, but not much of the Type 2 5-AR that is targetted by finasteride. (Finasteride has been an important element of my intermittent triple androgen deprivation therapy for the past ten years.)

Commonly heard advice is that these drugs do not generally add to the side effect burden. Tall Allen's comment on reduced libido with finasteride applies to a minority of men, about 20% (10% probably a placebo effect, 10% real effect), and that can be reversed by stopping the drug. Most of us have somewhat increased libido as finasteride usually boosts testosterone a bit. Sometimes the drug can reduce erectile function, and sometimes it can enlarge breasts, both happening to only a few of us. All but the breast enlargement can be reversed by stopping the drug, as I understand it. Oh, I almost forgot: the most dangerous side effect - growing more hair in the male pattern baldness areas for many of us! That's dangerous because we will have to fend off amorous females!

Take care,

Jim
Thanks, Jim. Pardon my ignorance, but how would I know that I need those other drugs? Or are you just saying they'll be a more potent combination that could slow/stop the growth better until a decide on a treatment?

So, you're saying the breast growth never goes away after usage stops?

Best,
John

 
Old 09-13-2010, 08:26 AM   #13
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Re: Recently diagnosed, thoroughly perplexed about options

When I search for "Bostwich labs, Dr Bostwich" the only results are for "Bostwick" labs and there are tons of them. Could you give me more specifics on how to find this guy, please?

Also, IADAT3since2000, are you saying that if I find a color doppler facility in the area, it's not really best to go there because the doctors wouldn't have the necessary skill to read the results?

 
Old 09-13-2010, 09:42 AM   #14
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Re: Recently diagnosed, thoroughly perplexed about options

Is the reason you're looking into color doppler a cost issue? In my case, after positive biopsy, both the Urosurgeon and the Radiation Oncologist recommended an MRI. The visualization is much better than color doppler and my insurance pays for it. My insurance pays for CyberKnife as well, but different insurance companies around the country have different policies about that.
- Allen

 
Old 09-13-2010, 11:05 AM   #15
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Re: Recently diagnosed, thoroughly perplexed about options

I had a temporary Blue Cross policy that was due to end August 31st. I was diagnosed on August 30th. They are not covering anything now. This adds a whole other dimension to this situation. I am about to try to contact a lawyer to see if, as I had been told prior to any of this, BC is required to cover me since I was diagnosed during the life of the policy.

I will certainly consider an MRI if that will be better than color doppler.

 
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