My Journey Begins, Cancer and Medicare, Maybe this will help some others one day

[alarmguy]

Head and neck - twice - 4-5 weeks …

Oh man, glad to see your comment "lived to see many many good days" hopefully you are still doing ok.

 

[alarmguy]

Update - 4 weeks of radiation so far, 2 more weeks to go

Consider this a tribute to those who have been through this. I REALLY went into this with 100% enthusiasm and I try to maintain that attitude. First two weeks or less, felt like nothing, 3rd week into it REALLY went downhill, not good and 4th week even worse.

I'll get through it, but it takes a toll on you. Im tired by noontime now, Im having some intense side affects. Dont let one persons side affect affect you and maybe Im the one to ignore.
Due to irritation I wake up every hour to an hour and 15 minutes feeling like I have to go to the bathroom. It's brutal, good news is Im tired and fall right back asleep.

Also before treatment I have to drink 30ish ounces of water. WELL, Im having a rough time with that, leaving treatment I use the bathroom in the place two times sometimes, then on the ride home I have to stop again 10 minutes later at a fast food place, then this week for the first time I have to stop again 8 minutes later at another fast food restaurant. I get home 8 minutes after that and go rushing in the door to go once again. The problem being is I cant entirely empty my bladder and about an hour later it gets painful to go. That settles down some 8 hours later.

BY the time I get home, the afternoon is filled with pain when I have to go. Weekly Dr meeting said that what I am experiencing is one of the possible side affects of treatment, To be sure they ran a urnine test and its not an infection. But wow, certainly feels like it. They now have me take an over the counter pill that actually helps greatly but not perfect. Called OXO

So there is my update. Next week I will be entering my 3rd month of drug therapy, One pill a day, that is a piece of cake compared to the radiation. You know, again, for those who went through it. I really thought after the first week that this was going to be a cake walk. Well, in my case it is NOT.

Ok, cool part, I took my one day old iPhone 15 which is tethered to my watch. My phone was on the counter and with my watch tethered to my phone I was able to take photos and video of the machine rotating around my body MAKING SURE NOT TO MOVE *LOL*. These are stills, some are also from a 5 minute video I made. IN previous posts I outlined the procedure. So this is just a snippet or two of two 360 rotations of radiation treatment. Also next week I will try to get pictures of the CT scan that they do first. At that point the panels are also along the sides of your body in addition to the round disc

First photo is starting position. Some photos might seem grainy taken from video and also cropped

After this the machine goes back to the upright position in photo #1 and decks come in, table electronically sides out from under the machine and lowers to knee height.

The staff at the cancer center are amazing. Really nice people, they do move you along, each treatment is around 15 minutes and then the next person goes in. However you get to know them and they you, you feel something more than just a number.
I'll admit sometimes the reality of it all can become mentally challenging. Those times are short but sometimes intense for me. This is the biggest health "crisis" I ever had in my life since the 4th grade.

 

[Pablo]

Man all I can say is man hang tough. Will pray more for you.

 

[alarmguy]

(typo) "decks" in post #142 should be "techs" or "radiologists" (wonderful people)

 

[alarmguy]

Man all I can say is man hang tough. Will pray more for you.

Appreciate that. Boy, all these years, you hear of people who go through this. Your hearing words but once you experience it is when you really understand what those words mean and the impact. Mentally and physically.
I'll get there! All I can offer others is DO NOT avoid your doctor and if you feel you should also get opinions from other doctors. It's your life and the sooner you deal with it the easier it will be and also the outcome better.

I find myself staring at these photos and the 5 minute video of the 10 minute treatment I made and I cant believe that is me laying there. It's really right in your face reality that you deal with. I still look and cant believe it.

 

[Al]

Hang in there!! What hospital are you going to?

 

[mk378]

That is an older type of machine. The latest generation of machines mounts the radiation source on a robot arm which can move around the patient in three dimensions instead of only rotating. The first generation of machines simply applied radiation from a single direction. The rationale with newer kinds of machines is that sending beams of radiation through from as many different angles as possible reduces the total exposure of any particular non-targeted part of the patient. The beams all intersect at the place that is being treated, so it receives a relatively high amount of radiation.

The large part at the top of the machine is mostly lead shielding. At the center inside is a capsule of radioactive material, maybe 1 inch in dimensions. Since radioactive material constantly releases radiation in all directions randomly, the lead is necessary to prevent any significant radiation from ever escaping through the sides of the machine, as well as out of the bottom aperture when not in use. There is a physical shutter mechanism that is only opened during treatment sessions. During that time everyone else must leave the room.

In other countries, these machines have created several serious and fatal radiation incidents. The problem occurs after a machine is improperly abandoned or scrapped with the radioactive material still in place. People who don't know the danger dismantle the machines to recycle metal; when they reach the radioactive capsule it exposes themselves and others to severe radiation.

I also wish you well.

 

[4WD]

Thanks, agree, get your tests!
I’ve had a couple colonoscopies, only one polop before the last one which was clean so next time is 10 years.
Being an ex smoker, I also get an annual CT lung scan. Early detection is always the key.

As far as the gym I never used the silver sneakers program. United healthcare used to pay for me to go to Orangetheory and now my Medigap Blue Cross plan will pay up to $110 a month for a gym not on their list.

So I’ll still be able to go to Orangetheory.
But in this case, I will have to pre-pay and send in the reimbursement form every month. I really don’t know much about the silver sneakers program as I only went to Orangetheory and I liked it a lot because it was one hour rigorous coach training. I did feel a little funny at first with all the young people, but then I learned it doesn’t matter and I did pretty well with it.

I hate that name silver sneakers. It drives me crazy maybe one day if I get older and not embarrass embarrassed, I will check it out.

You can just go with a simple grey

 

[SammyChevelleTypeS3]

Absolutely - read up! -
So, I was going to MD Anderson - had two Doctors that had a flock of Interns in tow … Got to know one well enough that during a consultation - asked if I could play Doctor. I was spot on and he turned to the youngsters and said you might need to schedule time with him

(long read but those interested might find it useful)
Well, after beating the most serious part of a family history of diabetes and heart disease (I still have some arterial disease, genetic) but no intervention of even drugs are needed unlike all the males in my family which were a train wreck and had heart by-passes 20 years before my current age. Being the youngest I decided to not let that happen to me and I pretty much beat it, even though I have High LipoProtein A which nothing can be done about. I made sure to eat healthy. I also avoided diabetes (so far)

So, what do you know? since 2017 I have had very high PSA levels it started at a 4.7 and ended 7 years later at higher and way higher than 10___. Multiple MRI's and 4 Biopsies the first 3 over the years turned up nothing the last one in Sept 2024 turned up cancer.
Out of 12 samples taken only 2 came back, that was good and most likely because I was very aggressive on insisting on Biopies. One core showed a 3/3 which really doesnt call for action at that point. The other was a 3/4 which would be considered intermediate risk. This to me was VERY early stage and I wanted it gone.

So my regular urologist calls me up to see what I want to do. Watchful waiting, Radiation or Surgery. He clearly thought Surgery was not at all called for (but read on) I couldnt make up my mind, so there was a 4th option. A referral to Duke University Cancer Clinic almost one of the top 10 in the USA. We (my wife and I) got an appointment a few days before Thanksgiving 2024 to meet with 3 specialists who spent hours with us, just for us, just to review my case and get the options, individually one on one. One Oncology Radiologist, One Surgeon and One Medical Oncologist
My wife and I made the 3 hour trip and stayed in a hotel for the meeting the next day. FREAKING wonderful experience. The entire 5th floor devoted specifically to prostate and other cancers involving that area and we were there. Just for me.

Throughout ALL of this my Medicare ADVANTAGE plan paid for everything, not one hiccup not one objection, no stipulations.

Sadly all 3 specialists were very concerned. It caught my wife and I off guard. Here I was so happy that I found out about this cancer so quickly and being so proactive, almost insisting my Dr do a biopsy. But they explained to me, even though my PSA was down to 11.5 it had to be doubled to a PSA of 23 because of a drug I was on. I found out that all three doctors were to label me "High Risk" and bumped me up from a 7 to more like 8 to 10 (10 being the worst) with favorable outcome.
Also I found out if I wanted surgery it might not be successful do to heavy scarring from an appendectomy I had in the 4th grade that couldnt be closed up at the time, I was septic and almost died. So the surgeon said if I want surgery, robotics is out and he will do it by incision but a 20% chance I will wake up only to find out he cut me open and could not proceed. I was almost relieved in the sense that radiation and drug therapy was making more sense.

Based on the 3 doctors, they ordered a PSMA PET SCAN the latest state of the art scan to see if prostate cancer spread in my body. They were very concerned on how my PSA can be 23 and only 2 cores showing cancer, they felt something great must be going on. However the earliest available appt was Jan 2nd so they offered if I could get one sooner near where I live by all means do it. I told them I want to be treated there, they offered there are many doctors good near me and mentioned one name in particular of a Radio Oncologist that they love and wanted him up at Duke that is within 1 hour from me. I arraigned though the new doctor closer to me AND instant response of the doctors at Duke to get a PSMA SCAN ordered closer to me on Dec 20th and follow up with the new doctor near me on Dec 30th. So thanks to Duke within 2 hours the order for a PSMA PET SCAN arrived at a place closer to me. I was so impressed and also impressed with the staff at what will become my new doctor. All this time, unknown to me and handled by their offices approval was needed by my Advantage Plan, I only found out because I got a letter in the mail it was approved. Once again, no hiccups at all from my plan. The retail cost of this scan was $19,000 and it was determined as far as the scan can tell, the cancer has not spread to any other part of my body.

SO that ends my journey with my medicare advantage plan 2024/ NOT ONE QUESTION, NOT ONE HOLD UP. EVERYTHING PAID FOR.
With that said the current Advantage Plan wasnt being offered in the New Year 2025 and I could care less, I just pick a new one on line on the government website and as soon as you click, you are covered for 2025.

HOWEVER since the provider had decided (Aetna) not to offer this plan for 2025 I also had the right to go into standard Medigap Plan with NO underwriting and guaranteed acceptance. SO here I am with cancer and after thinking about it for a month or so ( I knew way ahead of time) I decided for 2025 to go into private Medigap Plan N which includes Government A and B plus private plan D for drugs. The cost is only $135 extra a month and of that, they will pay a gym cost of up to $110 a month! Net would be $25 including the drug plan so why not? Here I was about to battle cancer and there would not be much to think about.

Why did I decide to go to Medigap from an Advantage plans I so loved for 3 years? Simple, chances are it will cost me less for the year and to be honest, since I am new to the area I wouldnt have to worry about who is in network. I will say, after 2025 I plan but on going back to Advantage C if this all resolves itself. But I honestly do not know right now, though as of right now my Drs are in the Advantage Plan I would choose if I did there seems to be a little turmoil from year to year. The reason for this post is I read stories about Medicare and it's a wonderful system if you take advantage of it and use it, educate yourself right on the https://www.medicare.gov/ website, you can read of days and study.

So the decision was made. Fantastic doctor here on the coast who my wife and I liked very much and they like him up at Duke that they wanted him to move up there, he didnt want too.
I am to undergo radiation and drug therapy. This doctor changed my threat designation a little bit. But he explained it means the same. From high risk favorable outcome to intermediate risk unfavorable outcome.

Yesterday, Wed, the drug was delivered to my house. I am to take one pill a day for 6 months. The drug cost is up to $3000 a month x 6 months roughly $18,000 but can be as little as $14,000 my cost is $2000 thanks to the new medicare drug out of pocket limit for 2025 or it would have been $8,000. My life as I know it will change for the next 6 months and I am not looking forward to it because of the drug but I want to live and make sure this thing is knocked out. The side effects are not going to be pleasant. However they are being aggressive in the sense they use this for high risk cases and in cases where it has spread.

Next week I am going to spend over another half day, meeting with two specialists (one of which is my new doctor) arranging and going over what will be my radiation schedule coming up which will be 5 days a week for 5 weeks as well as MRI and CT scan. This past Monday my regular urologist implanted 3 gold markers inside my body that the computer will use as markers in order to deliver the radiation to the proper area and avoid other areas as much as possible. My doctor tells me the survival rate is 90% for 15 years.

Prostate cancer sucks. The possible side effects of surgery or radiation are different but both can suck. Though immediate side effects for me with radiation will be almost none, 3 years down the road it POSSIBLY can rear its ugly head and even expose you in the future to cancers because of the radiation itself. My hope is, as time goes on medicine advances. One reason how far we have come was surgery was always preferred as late is 2006 now radiation is much more focused and that trend is almost reversed DEPENDING ON YOUR CASE>

SO FOR ALL OF YOU, MAKE SURE YOU ARE GETTING REGULAR CHECK UPS, DONT BE AFRAID OF YOUR DOCTOR, SURE EDUCATE YOURSELF, READ UP BUT ONLY SO YOU CAN TALK TO YOUR DOCTOR AND UNDERSTAND THE CONVERSATION. DO NOT RELY ON INTERNET FORUMS AND WHAT OTHER PEOPLE SAY. YOUR DOCTOR IS THE KEY. MY POST IS ABOUT BEING PRO ACTIVE IN DOING SO, DONT BE AFRAID OF TESTS, IF YOUR DOCTOR GIVES YOU THAT OPTION, TAKE IT, DONT PUT IT OFF.
From the sound of my cancer (they are all different in aggressiveness) I am so glad I was almost insistent on my 4th biopsy when my doctor gave me the choice to wait another six months or do it now.

As far as Medicare Advantage C plans and Medigap Plans plus D plan it comes down to cost and what you want and what you are willing to pay and possibly give up depending on the area you live. I loved my Advantage C plans but given the chance to go back (at least for now) Medicare A, B and private Medigap N plus private Plan D makes everything thoughtless for the extra monthly premium.

Medigap costs are pretty much fixed where the Advantage C plan can get pricey if your copays add up to many thousands and you have to stay in network. So right now, yeah, I am happy to be in Medigap the purpose of my post is to highlight my personal experience. Im sure the end result would be the same with my Advantage Plan. However should your Advantage C plan not be offered the following year, the system once again worked perfect. In the mist of a cancer diagnosis I got an unconditional acceptance into Medigap because my plan wasnt being offered and that gave me the option of choosing anything I wanted. If my plan was still offered I would think NO WAY would I have been accepted into Medigap and that is something each individual needs to know. Once you are in Advantage c you can only get out in the 1st year for guaranteed acceptance. UNLESS your Advantage C plan is no longer offered.
The system works and works very well, I am thrilled that I live in the USA and can get this latest technology, latest drug therapy that even my regular urologist never prescribed before. People trash our health care system, well, you will be thankful in cases like mine.
I was able to consult with a total of 5 specialists plus my regular urologist (who is specialist in his own right) and my cost was pennies. Making educated decisions is up to you, get opinions.

Hope you are doing well and responding good to what ever they want to treat you with. I had a massive over sized prostate (cancer free) partially removed about one year ago. I can have some idea what you are facing and will pray for you to do well on the journey you have begun that no one wants to travel. Good luck and I hope you have some support (family/friends) to be with you as you deal with it. Take care. Hang tough.

 

[alarmguy]

Hang in there!! What hospital are you going to?

Thank you,

Initially my wife and I went for a morning long consultation with 3 specialists in their field. Medical Oncologist, Radiation Oncologist, Surgeon at Duke University Cancer Clinic. The entire 5th or 6th floor deals with these prostate and related systems cancers.

They spent the entire morning with us and examined my case. Since surgery would be a bit of a challenge on me it made the decision easier. We decided on Radiation and Drug therapy. Duke University is a 3 hour trip for us. They told us that my local area can administer this treatment as a matter of routine. 100% sure I didnt need to do it there. However at my insistence to further make me comfortable they told me a doctor that they really like which is far closer to my home even though they said anyone can do this.
To be clear if we chose surgery I would have used Duke, I would have been a challenging case for him with possibly a 20% of failure and would have needed radiation only to find out after they cut me open. Robotic was not an option for me do to scar tissue.

All told my wife and I spoke to and consulted with 7 doctors. Under the care of 3 of them right now but the one that can be called my doctor for this entire treatment is the radiation oncologist recommended by the team up at Duke (to repeat though, they say they are all good)
Im being treated in the Novant Health Network in NC> Would I have loved to be at Duke? Sure but the treatment is the same and I like my doctor. I feel the network here is a bit fragmented but it is what it is.

Ps I caught this early because I was proactive, I was NOT impressed with my General Urology Doctor. If it was up to him I would have waited another 6 months for a biopsy and 6 months earlier he talked me into already waiting 6 months. I insisted on it this time.
REAL nice guy but, I just dont get it. He is not in-charge with my treatment though. That is the radiation and medical oncologists that are.
I will be looking to find another doctor (general urologist) once my treatment is done who will, I think monitor me for the rest of my life I think. The reason I do not right now as the specialists involved above 2 months ago, use him for some minor things to get done before my treatment. They said if I switched right now it might delay things and the minor things I needed to be done were standard stuff at the time.

 

[alarmguy]

Hope you are doing well and responding good to what ever they want to treat you with. I had a massive over sized prostate (cancer free) partially removed about one year ago. I can have some idea what you are facing and will pray for you to do well on the journey you have begun that no one wants to travel. Good luck and I hope you have some support (family/friends) to be with you as you deal with it. Take care. Hang tough.

Wow, oh yeah, I bet you do have some idea. I bet you can understand about the bathroom stops after treatment. Sometimes it was challenging before cancer (enlarged prostate) But the last two of 4 weeks of radiation I went through has been brutal. I have two more weeks to go and Im honestly not sure how I am going to deal with it UNLESS it plateau's at this level. It might. when I get to the weekend things calm down a little. At first radiation was a piece of cake but it builds over the time of treatment. Guess that only makes sense. Im sure not everyone experiences what is going on with me but it is not rare.

Your last words are kind of true though. Hang Tough. Im getting a handle on handling it and the OXO over the counter med helps. Im finding the weekend breaks from treatment tell me once I am through the next two weeks some sense of normalcy should prevail.
Im sure, you are being proactive since you already dealt with enlargement. Im sure they watch your PSA.

Im sure I will be ok, it was caught really early. I have this one wild card, doctors dont know why. Puts me in Grade 3 and why the all out treatment. They do not understand a PSA of 23 with such little cancer. Good news is, it is not showing up anyplace else on the latest, greatest PSMA Pet SCAN. I cant ask for better then that considering.

 

[doitmyself]

You sharing this is awesome. VERY informational and helpful. Thank you, bless you, and wishing you the best.

PM me your address and I will send you some homemade maple syrup.

 

[53' Stude]

Praying for you sir. Hang in there

 

[Al]

Thank you,
Ps I caught this early because I was proactive, I was NOT impressed with my General Urology Doctor. If it was up to him I would have waited another 6 months for a biopsy and 6 months earlier he talked me into already waiting 6 months. I insisted on it this time.
REAL nice guy but, I just dont get it. He is not in-charge with my treatment though. That is the radiation and medical oncologists that are.
I will be looking to find another doctor (general urologist) once my treatment is done who will, I think monitor me for the rest of my life I think. The reason I do not right now as the specialists involved above 2 months ago, use him for some minor things to get done before my treatment. They said if I switched right now it might delay things and the minor things I needed to be done were standard stuff at the time.

You are obviously in good hands. I had my prostrate removed 14 years ago. Mine was 100% encapsulated.

 

[Triple_Se7en]

Wow, oh yeah, I bet you do have some idea. I bet you can understand about the bathroom stops after treatment. Sometimes it was challenging before cancer (enlarged prostate)

Were you on a prostate drug before cancer arrived? If so, what specific prostate drug (and dose) were you taking?

Stay brave and confident alarmguy. Lots of prayers are coming your way. Peace be with you.

 

[alarmguy]

Praying for you sir. Hang in there

Thanks Stu!
Not funny *LOL* but I just got a call, my radiation was cancelled today, Machine broke ! (cant make this stuff up and kind of scary)

 

[Pablo]

Thanks Stu!
Not funny *LOL* but I just got a call, my radiation was cancelled today, Machine broke ! (cant make this stuff up and kind of scary)

I’ve read a couple stories about “source” material escaping from scrapped old school machines over the years. Nothing to do with your topic really but entertaining in a scary way

 

[alarmguy]

Were you on a prostate drug before cancer arrived? If so, what specific prostate drug (and dose) were you taking?

Stay brave and confident alarmguy. Lots of prayers are coming your way. Peace be with you.

For a while I was on Tamsulosin, it really didnt do much and think I stopped taking it.
Recently from 2023 I was on Finasteride and was a big help but it takes about up to a few months to reduce the size of your prostate.
I have read studies (if that is why you are asking) to see if Finasteride increases the odds of aggressive cancer (or just cancer) I dont think anything solid was found but I haven't followed up.

The problem with Finasteride for me personally was the Dr prescribed it to see if my PSA would go from 15 to around 8. He knows I wanted a biopsy but he said let's see in six months where we are. Well it didnt come in at 8 it was like 9.5 and I reminded him, he said well it's close to 8 and he talked me into waiting another 6 months. Well, it then went to 11.5 and once again, he said, well, if you want a biopsy we can do one or wait ANOTHER SIX MONTHS! I said I WANT a biopsy! GEEZ!
Biopsy showed cancer.

Here is why I am REALLY upset though. When I did the Duke Cancer Clinic consultation (in this thread) ALL three specialists were ALARMED at my high PSA. THEY TOLD ME MY 11.5 HAD TO BE DOUBLED TO 23 BECAUSE THE FINASTERIDE LOWERS THE TRUE PSA BY 50%.... All of a sudden I was labeled a high risk case with favorable outcome. PSMA PETSCAN a month later had me changed to Intermediate risk (no spread was found) BUT unfavorable outcome because they can not explain the high PSA for the small amount of Cancer. Pretty much both the above puts me into a GRADE 3 cancer group it's the better of the grade 3s called 3A.
Grade 3B abd Grade 3C get tricky and Grade 4, well ... enough said.

This is why I tell everyone, be proactive with your doctor. If he gives you the option of a biopsy do it. Better safe than sorry. It's kind of a brutal procedure HOWEVER it's over in 15 minutes or so and you can drive yourself home. At least I always did. I have 4 of them over 7 years. Only the first one did they put me to sleep. I dont think that they do that anymore.

 

[crashz]

We're praying for you alarmguy!

 

[alarmguy]

We're praying for you alarmguy!

Thanks!!!
The best part about this thread is I think it helps some maybe ask questions from their doctor. The doctors I personally have dealt with ALL were in favor of me doing whatever I want to do to seek further opinions to help me decide on a course of treatment.