asked him why we do not use the know-how of doctors dealing with nuclear exposure.
Many of us suffer from damages produced by radiation....like blood in stool, urine and other damages. However when I visit doctors, it seems they are ignorant of treatment for damages due to Radiation. I feel we should use therapies which are employed when a person is exposed to nuclear radiation.
Radiation damages good cells and changes DNA and working of cell on Rectum, colon, bladder etc. Damage is so strong and hidden that sometimes it may take 5 to 10 years to appear. But understanding of Doctors regarding the process of this type of damage is non-existent.
I wonder if we can consult doctors who are familiar with dealing with nuclear exposures.
But where are they and who are they. Gastros are at a loss and all they say is wait and if it gets worse then they do treatment which may or may not work .
Yesterday I consulted an experienced human Gastro ( not 15 minutes guy) who says he has so many people with pelvic radiation as a few years ago radiation was savage and less precise. But no valid cure.It will be useful if our friends of forum have a look into this problem and may come up with available relevant therapies.
Till then I use Psyllium, Aloe vera drink, plums, curcumin liposomal, vitamin D3+K2
I strongly support your views. I have severe problems with my bladder bleeding and little offered in the way of ongoing treatment. After six weeks of constant heavy bleeding my urologist treated me with a drip of amino caproic acid, which stopped the bleeding for four months, but now the bleeding is starting again. I will probably need to repeat the treatment soon. I hope to avoid the hyperbaric route because it takes so much time. Not sure I agree on the ischemic vs. inflammatory point--I was told my entire bladder looks pink and inflamed.
What a great post. My husband has had some experience with both radiation cystitis and proctitis, but nowhere near the negative experience of the heartbreaking and life-altering stories that I have followed here for the past several years. His most devastating SE of radiation (sensitive scans plus 39 salvage RT) is CLL. What were we told when inquiring about the effects of cumulative radiation? "Oh, the amount he's getting is miniscule and will not cause any side effects." Only when diagnosed with CLL did his local MO and his CLL specialist acknowledge that the CLL is a side effect of radiation. As a result, his options for treating PCa are greatly reduced.
My husband had radiation 10 years ago, now found high creatine level and had to have 2 stents put in kidney. Will need them replaced every 3 months. This according to urologist is from scar tissue from the radiation.
I feel real sad for the avoidable state of your husband....Why URO if he has professional ethics make your husband aware..
That is why I call medical profession inhuman and disrespectful to patient.
Patient is victim of this mindset of docs
It has to stop
Thru patient power in which docs are just one piece...of health puzzle
What an ignorance on the part of medicare knowhow. We all know that radiation damage takes ling time to appear. I am sure if we have correct follow up , this kind of unwanted avoidable damage can be prevented...
How....
Thru better biomarkers , adapted life style,
medications to heal hidden scars diet..
There are natural supplements to heal scars..
Curcumin aloe vera vitamins diet vitamin D levels....and many others
Let us not wait for RCT which we shall never have...
I welcome this discussion about these terrible delayed side-effect of radiation therapy. My husband is one of the guys who has been suffering horribly from radiation cystitis. The bleeding began just over 2 years after salvage RT to the pelvic area for BCR 18 months after RALP. Intermittent bleeding morphed into blood clots causing severe blockages requiring ER visits in the middle of the night. Many procedures were performed, provided a couple months relief only. More procedures then indwelling Foley two times for 3 months followed by incontinence. After Foley removal total incontinence when standing/walking. My husband is miserable in Depends & self-cathing 4 times/day. QoL is drastically affected. He is going on 79 & not a candidate for surgical fixes. According to the urologist he ultimately will return to indwelling Foley for the rest of his life. Had we known the SRT would lead to this misery, probably would have done ADT only for the BCR. PSA was really not high -- doubled from less than 0.1 to 0.2 in 18 months. Sorry to vent here. It's really taking a toll on both of us.
In India the Tata group (now including Tata Memorial Hospital) pioneered ways of using radiation to treat cancers. More precisely they were researching the effects of radiation on humans. The cover story was humanitarian, to treat cancer and other conditions. Actually this led the Indian efforts to develop nuclear weapons. Radiation has always carried destructive consequences. But is used for benefit in cancers to the degree it can be precisely targeted and modulated. But never without substantial risk.What is known is always less than what is unknown, what is not yet know. Think of an expanding sphere as containing all of what is known. Whether by an individual or the collective (Correct and scientific verifiable knowledge. That is the first problem!). The sphere is ever expanding as we add knowledge. But the interface with what is not yet known (the sphere) is ever expanding. And it is not a smooth interface!
I too suffer from radiation cystitis and proctitis after receiving radiation for PC several years ago. The radiation did not stop my cancer and also created urinary issues for me. The reaction of my RO was that the radiation could not have possibly caused my urinary issues. So my first problem was that my RO did not take responsibility for the damage he created. As such, he was in denial and not interested in helping me solve my problem. I also discovered that my RO was totally unqualified to provide detailed help based on his training. That is, he was trained to shoot the radiation into me but not qualified to access and fix the damage he created. Very sad. I had to search for a qualified Urologist who I have been seeing for several years here in Atlanta, GA. My lingering problems are rather minimal compared to what some others on this forum have experienced. As such, I am happy with the Lupron life I have.
Just for laugh. When I talked to my generalist about my problem. He said he knows nothing about this. But he said RO is responsible for this damage and ask him to propose the solution.By the way, when I talked to the RO, he simply said go and see a gastro, no explication of the damage he might have done.
And gastro knows nothing about radiation injury.
He simply deals it as inflammation, scar, infection etc....
Actually, he/she does more damage since he /she know nothing of radiation injuries...short and long term.
And patient ....what he can do
Even on this forum, I do not see the mindset which makes patient centre of the
medicare, not his disease. I have not read any discussion on this topic of radiation injury.
Let us cure the patient, not his disease. He may die from second effects of cure...
I have nothing against medical therapies, but they have to be patient oriented
i am not as pragmatic as you. The doctors KNOW! for a variety of reasons they choose to ignore or minimize the side effects of radiation (particularly long term side effects). Another part of the problem is the patient. At that point he is less than fully alert, having just had their life upended by the dreaded CANCER diagnosis. Most people have little idea of the profound effects (both short term and long term) of radiation and tend to believe the most optimistic scenario presented by their health care provider. I was counseled as to the short term side effects but little was said about long term consequences. Of course, the meticulous approach the radiation oncologist take to positioning and insuring your bladder is full and your bowel empty should tell you that this is not going to be a walk in the park. The fact that there continues to be new methods of delivery of radiation (implants, Proton beam and others) indicates that no one is satisfied with the results of radiation therapy. Even back in the day when I was trained about radiation exposure in Veterinary school it was handled as having potentially Serious side effects to the person taking simple radiographs. As in all other areas of medicine and science THE SCIENCE IS NOT SETTLED! Radiologist are continuously looking for better methods
I would agree a study looking into long term side effects would be very helpful in making the decision to radiate or not. Knowing and believing that the evolving science will continue to find ways to further minimize the side effects I wonder if anyone could get the funding to do such a study
I had radiation in 2019 to the prostate bed after removal of the prostate. It did not stop the cancer and yes I have had bowel changes ongoing since the radiation.
I will add that I also think that too many physicians dealing with prostate cancer have a fairly narrow view of treatment options and are not interested in looking at alternatives outside of the SOC (standard of care)
Well said.....Patient needs the awareness of advantage and injuries due to radiation. Docs have a duty not only to cure the disease but to inform the patient of side effects and how to handle. Who cares of side effects....
Rarely, docs make the patient aware of side effects. Patient is fully lost with all the therapies to deal with his cancer. I myself trusted RO about informing me of long term damage, but no mention. Just a robotic routine way of dealing with patient. That is not called medicare.
So true. The possibility of years-long suffering from the radiation cystitis / strictures/ bleeding was not even brought up when the salvage IMRT was recommended.
Need to add urethral stricture to the list, though supposedly the risk is so small, it is there as I am an example of urethral stricture side effect of my IMRT+HDRBT treatments.
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