When my husband was diagnosed in 2007 they did not remove his prostate. He was diagnosed stage iv. Since that time we've gone up and down with concern over tumors increasing as we've fought his psa rise and fall.
We are in one of those periods of rising psa. He's lately had pain that he says feels like his tailbone. He does have a small fracture there. Though he's now having some difficulty with pee stream, with discomfort while peeing and peeing very often. He said recently he's feeling a poking feeling there.
Normally, we have a color doppler done 3 times a year. This increase has only been the last 3 months and can't travel by plane or the 7 hour drive to have it done. It's unfortunate that medical centers only use them for biopsy. I know we can pay, though we'd still have to travel which is something we can't do during this Covid situation.
We are having a pelvic MRI today and a prostate MRI tomorrow as an alternative to the doppler.
My question is this. We were headed into this 6 years ago, but avoided it with Zolodex. Shrunk tumors 50%, we were also doing cannabis suppositories, though we think most of the shrinkage was Zolodex. For certain the cannabis has maintained us for a long while, though. The recommendation was palliative radiation. Understandably, we don't want that. He's had two spot radiations, one helped pain, though L4 2 years later is lit up again, and the second radiation was some improvement.
The Question.. I'm sure there are people here who were diagnosed metastatic, not had their prostate removed and have had to deal with tumors pressing on the urethra or actually posing a threat of breaking through the prostate wall.
I'd like to hear any information on this since we could be headed into this territory and want to be prepared prior to doctor's advice. (Though I respect it, we always try to stay ahead for decision making purposes.)
We have now after 13 great yet tiring years, are gearing up with new energy for diet, supplements, sun, earthing, (he is doing zolodex- the casodex we had to stop since it knocked him on his butt, he was like a zombie)..
And we are doing an out of the box protocol along with this.
We did many things over the years, I could fill pages, though we got tired- and older..
If we had the opportunity originally to have his prostate removed, we would have chosen proton beam. I did call them 6 years ago to see if he needed radiation they would do that thin beam. The answer then was no since they use something else with palliative, which doesn't make sense.. why not use a thin beam to protect tissue.
Also, why don't medical facilities with color dopplers check on their metastatic patients who still have their prostate with tumor size fluctuating. For me, I believe the use of palliative is unfortunate. Are we written off? We certainly pay high insurance rates.
Thanks for any information. We are hoping to pull another rabbit out of the hat..
Damn those rabbits lately have been wanting to stay in that hat.. we need to coax them out.. one MORE time.. to regroup...
Boy, this 'crap'.. as you guys say.. the beast needs a lot more good medical attention on clinical trials on supplements, alternative, less invasive methods, how DIET is crucial and detoxing the body.
genie (please forgive the typos.. i'm exhausted)
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Bluebird11
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Have you discussed palliative radiation of the prostate (with SBRT) or palliative prostatectomy? Tumors penetrating the rectum are really difficult to deal with because of the high probability of fistulas.
No, we haven't discussed anything yet. So are the rectum hasn't been an issue. Even with opioids he's using senna. It's the urinary frequencies, the discomfort, (no visible blood-either urine-and no dark bowels).. it is what he has considered tail bone sacrum pain, which is difficult because one must lay down.
We will find out more tomorrow. We don't want to rush into something since we've doubled down on somethings that could help.
I think our prostate specialist said an adamant no once about 3 years ago when I suggested palliative prostatectomy. I didn't ask why since we were on the phone...though I thought because of the 'mother tumor' theory .. though, we must consider every option if it comes to making this type of decision.
SBRT palliative radiation when discussed 6 years ago could possible disrupt his bowels and bladder indefinitely, depending on how 'lucky' a person is. Isn't this the point where there is incontinence, bladder, bowel or both?
Why is it called palliative prostatectomy. Isn't all prostate removal in various stages? What is the difference what stage the prostate is removed as far as how it is removed?
I'm sure I will have more questions and discussion. Tomorrow we find out more about the prostate. Today it's the pelvic area.
Also, in order to do a prostate MRI, we need to use a Tesla machine. We were really fortunate/blessed to get that within 2 days. They are difficult to book.
We are certainly in a different place then we were 6 years ago. Radiation, of course can extend lives, but it sure can create a lot of other problems.
Thanks very much for your time and response. (again.. not rereading.. rushing do a little more research)...
It's called palliative because the intention is to stop or prevent difficulties rather than extend life. They usually reduce the dose of radiation with the goal of stopping spread of the cancer into adjacent structures, like the bladder or rectum. When there is already penetration into those structures it becomes very difficult because radiation or cutting causes more problems than it stops. At that point, diversion may be the only option.
Writing this after the one below. I just printed out SBRT and will read. It actually sounds better than the treatment presented 6 years ago. Is it a newer treatment. We are in a good area for treatment with Stanford, UCSF and Sutter, though, I'm wondering if an Integration (I think it's called) Radiologist is better suited.
We've been to a top radiologist (well known).. who said, you couldn't have been metastatic 13 years ago, you'd be dead. We almost fell on the floor. Since we had the results from 2007, to this day show those same places and are the trouble spots.
Just from observation, I feel the local radiologists may be losing the ability to read and creatively work with the actual scans since they are relying on who is reading them, plus their time with patients and ability to study and follow up on cases is limited.
This is why if SBRT of even having his prostate removed, we'd need to find ... well you know.. the best that we can.
Just a definition to avoid confusion: a "radiologist" is a doctor who reads scans, like an MRI. A "radiation oncologist" is a doctor who delivers radiation.
So you should be talking to a radiation oncologist about any possible treatment, and a radiologist about the MRI.
Stanford is easier even though it's 50 or 60min.. UCSF in the city is a bear getting in and out.. creates a lot of stress...
we are already across from Stanford at Sutter.. and an annex of UCSF
we began at UCSF though felt they weren't as patient oriented as I would have liked..
thanks for the recommendation...
do you know anyone who still uses a scalpel in the SF Bay area.. I thought Nalakrats idea really fits since, if we were beginning and not metastatic we wouldn't do robotic.. we'd go to Loma Linda..
I WANT TO SAY... you are just the BEST. I am so grateful for ALL of you...
THANK YOU.. so very much.. I have something things to go on..it's like following a bread trail... or pulling a string out of a ball.. with so many things to give strength to..
Please keep in mind, my scope of knowledge to pull from comes from people I know, people who have had problems they hadn't expected from robotic. Now, how's this for just using my own common sense.... smiling here..
my thought is.. if i found an experienced surgeon who was a good surgeon and did many of these in years past, my husband's situation there might need something creative and exacting. I'm not saying robotics doesn't do that, but why so many men that I know have difficult with bowel and bladder is robotic was so exacting.
I am being honest about my lack of real numbers and research. Though, I'm not sure of real numbers anyway. Tall_Allen, I love these forums because of people trials. And, yes, we have two oncologists. One his only specialty. We travel, have traveled... we don't choose because the doc is in town or 5 min away..
I actually have great empathy for the doctors today. I feel they are under great pressure with all the consolidation of hospitals .. and accounting for every minute.
So, I get a little more old fashioned in my approach..
Thanks for the question, it helped me to clarify my own thoughts on this.
You are right to question your anecdotal evidence. No matter how many people you know and have talked to, some people have made an effort to talk to even more of them. For example, they talked to 326 men who were randomly assigned to get open or robot prostatectomies. Urinary function scores did not differ significantly between the radical retropubic prostatectomy group and robot-assisted laparoscopic prostatectomy group at 6 weeks post-surgery or 12 weeks post-surgery.
I'm not at all sure that surgery can be used for him, given the rectal encroachment. It may be too late for radiation too. You really have to talk to experts who will look at his MRI. Surgeons sometimes worry me when they have a hot-dog attitude, ROs tend to be more circumspect.
I appreciate your concerns about our choices. I too hope we have time to shift this. I also will get the information, evaluate it, post it here, get both oncologists opinion, though 'first' will be the news whether we need emergency action.
As I said, I can only make decisions for myself (us) i this case. We've done okay considering. He never had serious quality of life issues for many years.. we had that scare in 2014, but came through that...
we were very modest with the drugs. One can say what if we hit it hard. Well, IMO, with stage IV.. it wasn't our way. It's a tough stage to begin with.
So, once again thank you. I take everything into consideration and I'm open to what you say...
Even in times of grief.. there is a comfort in this group of warriors... and sharers alike...
We've let the docs go who don't like us to be involved in the decision making or have the questions.. actually we've been quite lucky.. most appreciate the pressure taken off them and also, I do believe the staging makes a difference. When late stage they seem to listen more..
Some of the alternative docs have been a problem actually... but, they too have all helped in one way or another. I look at it this way.. They all provide gifts.. either to not go in their direction or work with them, or a yes for great help and advice. One orthopedic said it's time for chemo. I said, that it's not an option for us. He looked me straight in the eye rather fiercely and said.. that needs reconsidering. Well, we will just choose another doctor since it's really not in our philosophy, no matter what.
We really try to look at this as hard as it is, as what gifts it is bringing. I know that's hard to be with when it can get really ugly, scary, painful.. though my husband and I have gotten much closer after years of turmoil trying to understand how we both deal with stress...
I've learned so much about myself..
would I choose to not have it .. absolutely... like growing old together without these challenges and hard tiring work.. but this is our plate.
I'm not sugar coating anything for sure.. you guys don't call it the Beast for nothing...
Thanks I knew what QOL and QOC meant. Just didn’t get that one. Like SOB did my past AFIB. Now 15 days AFIB FREE! And NSR DOUG. That’s a bunch of a acronyms.
the guys from the old advanced prostate cancer group had hats with CCKMA.. and they liked the kiss.. i prefer kiss.. since i don't want to the cancer can kick my a*s
I think kiss is more like it.. more power to us not letting us take everything from us..
I was a typical prostate cancer patient in 2012. Because I was metastatic (two Mets on pelvic bone) and a Gleason 8, I was not subject to any radiation treatment or surgery My urologist started me on Casadex and Eligard (Lupron knockoff). I continued on these hormone therapy drugs and in mid-2015, I discovered Dr. Shamsuddin’s text on IP6 (Amazon). I started taking IP6 along with my hormone therapy but I did not tell my urologist because he was unimpressed with all natural supplements. I went in for an examination and my PSA had dropped more than he expected. He requested a DRE which he had stopped doing in 2013. He palpated my prostate extensively. He was taken aback by lack of any tumors in my prostate. Six months later I shared with him what I had been doing. Two years later I moved to Florida and got a new urologist. He put me on Lupron and stopped the Casadex. He did not believe the medical notes on my history from my past Urologist. He gave me a DRE that should go in the history books. He admitted that there were no tumors in my prostate that he could find. My medical oncologist at the Florida cancer institute ignores my extensive supplements including IP6. He seems to think I am an eccentric.
Look up my old posts where the story is continued. My recommendation is to read Shamsuddin’s book and consider IP6. Kill the cancer cells! Good luck.
How the rabbit originally got in the hat magic trick unveiled:
Well Magician Sir Vonderbar has Pca and is a customer (no longer called patients, we are customers) who is getting chemo treatments. He notices that he is getting bald... and when he looked in his hat there was a hair in it....... Walla!!!
How the rabbit originally got in the hat magic trick unveiled:
Well Magician Sir Vonderbar has Pca and is a customer (no longer called patients, we are customers) who is getting chemo treatments. He notices that he is getting bald... and when he looked in his hat there was a hair in it....... Walla!!!
OTHER NAME(S): Acide Phytique, Calcium Magnesium Inositol Hexaphosphate, Calcium Phytate, Fytic Acid, Hexaphosphate d'Inositol, Hexaphosphate d'Inositol de Calcium Magnésium, Inositol Hexaphosphate, InsP6, Phytate, Phytate de Calcium, Phytic Acid.<br/><br/>
Overview Information
IP-6, inositol hexaphosphate, is a vitamin-like substance. It is found in humans, animals, and many plants, especially cereals, nuts, and legumes. It can also be made in a laboratory.
Some people use IP-6 to treat and prevent cancer, to reduce side effects of cancer treatment, for anemia, diabetes, and many other conditions, but there is no good scientific evidence to support these uses.
In manufacturing, IP-6 is added to food to keep it from spoiling.
How does it work?
IP-6 might help treat and prevent cancer by slowing down the production of cancer cells. It might also bind to certain minerals, decreasing the risk of colon cancer. IP-6 is also an antioxidant.
you've just given me some good information because we are doing something that is an oxidant .. so well, we won't use it for now. We are trying something out of the box..
I can't say at the moment but will in the future since it's not a responsible thing to do at this point. Though I will report back .. one way or another...
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