Posted , 5 users are following.
Has anyone - or their partners had the combination of being treated for Genetic hemochromatosis by venesection and then started with prostate trouble? This is not necessarily linked but any advice of information gladly received. Thanks.
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sheryl37154 Guest
Edited
My husband is homozygous H63D and had prostate problems but there is no reported research studies that link them. It is said that if a man lives long enough he will develop prostate cancer. My husband also got Hodgkins Lymphoma but again no reported link. I must add that his father died from prostate cancer.
After some years of problems trying different medications, he was finally referred to a urologist, a bore out was required and all was well again - so far. Whatever issues you acquire even if because of HH, treatment is the same as for those without HH.
It has been discovered that Cancer thrives on Iron. A para among many others cancer issues related to iron overload (not necessarily HH) is as follows. It is related to consumation of high levels of dietary iron (more likely from iron supplements and iron fortified foods).
"6) HIGH INTAKE OF IRON MAY INCREASE PROSTATE CANCER RISK. High intake of iron, combined with low intake of dietary antioxidants, may increase prostate cancer risk, according to results of a study presented by Ji -Yeob Choi, PhD, Dept of Cancer Prevention and Population Control, Roswell Park Cancer Institute at the 2007 centennial meeting of the American Association for Cancer Research, April 14 – 18, in Los Angeles, California. Those men who consumed higher amounts of dietary iron were found to be at increased risk of clinically aggressive prostate cancer; this risk was strongest among men who consumed fewer fruits and vegetables."
So the clue is to get it treated before it gets to the above stage.
Guest sheryl37154
Posted
Thank you for your reply sheryl. We have been reading the same stuff ! When my husband was found to have HH in 2012 the local doctor wasn't in any rush until I got on the case. He has had 2 weekly x39 then monthly x 18 then two monthly x 8 then 3 monthly up to date. He has given a lot of blood away and my concern is this....
I know PSA is a 'marker' but I wonder if the 'dilution' of his own blood as he replenishes and remakes that pint every time can have given a reduced PSA level which is unreliable. Checking back - his PSA marker went up when he went on 3 monthly which made me suspicious. I know PSA doesn't 'cause' PC but flags it up but that would make it unreliable.
The local doctors wanted to sit on their hands again and so we have set things moving to get a mp-mri done and we'll go on Sunday from home at 4am to be there at 7am. He has the enlargement on examination and the night time toilet visits. The idea of the mp-mri first is so that any biopsy can be targetted rather than random.
Your comment is reassuring that we are getting something done sooner rather than later. I smiled when I read the bit about fruit and veg as the amount of fruit he eats would keep a chimp going and our menu otherwise has been to all the guidelines for many years.
Thanks again for your reply and information. Regards to you both.
sheryl37154 Guest
Edited
Outdoors - we are on the same page here. As I also have HH (C282Y/C282Y) (and our son a combination of both) and had a delayed diagnosis of 9 years until my hips broke up, I have learnt to be assertive and educate myself.
The urologist sent my husband off for the MRI too (we had to pay $500-600 for it - considered a valuable birthday present!) and totally worth it. Physical examinations did not reveal any enlargement but the MRI revealed the enlargement was internal - starting to clamp down on the ureter - causing all the urinary problems. It was also not allowing the bladder to empty properly, causing inflammation in the bladder. So the 'bore out' was to remove that internal enlargement, and now my nocturnal visits are more than his at night - I think he set me on his path from the disturbance he had been creating.
His PSA was normal ("for his age", as it increases as men get older). The increase and decrease of your husband's PSA is interesting but I still could not find any research on it and no-one else talking about it. He must have had frequent PSA tests. Mostly they are done annually and once while there is a concern. Maybe it is a bit like ferritin and TS% levels, the more one is tested, the more anomalies are seen.
Over the 29 years since I have been diagnosed, I have searched to see if every issue is related to HH. I tried to find drs who knew about HH and the problem. Then I encountered a heart specialist who gave me some very wise advice. "Even if iron deposits were found in my heart, they could not drain or cut out the iron - just keep having venesections." That put it in perspective.
I have found some very good research on HH by a French team (Rennes, France) who look at a lot of different issues caused by HH but none about PSA and prostates.
Even if there was a link, as long as your husband keeps up his vx and is de-ironed to <50, his chance of getting cancer of the prostate is the same as all other men. And the fact that he is on the path to treat his urinary frequency is the best step to take too.
The "wait and see" approach really p.....s me off. Wait and see until it turns real bad??? I refuse to accept that approach and tell them I want preventative medicine, not after the event.
tom_70042 Guest
Posted
hi
i have had numerous tests and mri under specialist in LONDON PSA tests now every year and they are stable at 7
my advice is get the MRI and then a biopsy can home in on any area of concern as i did
my brother who does not have HH like me avoided the MRI and went along a different path biopsy and chronatherapy
told him to get MRI but he listened to local doctors who wont push MRI
a few months later the cancer breached prostate so hes had hormone treatments radiotherapy and chemo hes ok
push hard for the MRI you are doing absolutely the right thing
best wishes to you both
Guest
Posted
Thanks Tom for your response. The doctor's plan was wait and see.. Then he said he'd send him to urology ... we did a quick reckoning and decided that by the time they had repeated everything he would get nothing done until January.
Our county does NOT have Multi parametric MRI (mpmri) which is the standard needed. I worked out that MRI before biopsy gave a better idea rather than dabbing here and there ( and perhaps missing). Wel - it couldn't be justified so as I posted above we'll leave home at 4am and travel to an appointment at 7am and we'll call it our Christmas present.
Thanks for your good wishes and the confidence that we are going about it the right way. Regards from us both.
ruth51315 Guest
Posted
My dad was diagnosed with prostate cancer in 2000.
I found out that I am homozygous H63D in 2016.
For me to have inherited these genes, my dad must have had haemochromatosis but it was never diagnosed.
Too late to test him for it as he passed away in 2005. Now I know what it is, I can see that he was displaying symptoms of HH.
He was never a big consumer of dietary iron nor iron supplements but he didn't eat much in the way of fruit and veg either.
Impossible to say whether HH and prostate cancer were linked in dad's case.
sheryl37154 ruth51315
Posted
Your mother would also have been at least heterozygous H63D too. One gene from mother and one gene from your father.
My father must have been homozygous too as his symptoms were obvious but he was never tested before he died. My mother and siblings were all heterozygous.
Guest ruth51315
Posted
Thanks for replying Ruth. - We live life forwards and understand it backwards it seems. I know that is true for me.
I don't think there's an exact link - all I'm concerned about is if in fact the removal of so much blood over time has diluted the level of PSA that can be found in a test. That would make it useless as a marker.
Sheryl - husband is at or around 50 most times now at three monthly interval appointments. I laughed at your comment about wait and see - that's just like me.
Thanks to you all who have replied.
sheryl37154 Guest
Posted
50 is very high isn't it? How much is the level swinging? At this level it does not sound like a swing in the levels is going to make much difference. However, I have found some interesting information on Everyday Health of a few reasons why a PSA can rise and decrease and NOT be cancer. I will pm a link to you so it does not get held up.
Good luck with the MRI, I hope it gives you good news.
Guest sheryl37154
Posted
sheryl - 50 is his iron level and we are pleased with that and should stand him in good stead.
Thanks for the message and the info. You and I should get degrees or doctorates after all this studying.
Regards to you all from us both.
sheryl37154 Guest
Posted
For those of you who have been following this string, 'outdoors' and I have had personal mail communication to sort out this problem. If "outdoors" theory was correct, then all our blood tests would be affected and give false results. Now the best outcome that can be relied on will be the results of the MRI.
So hopefully that problem is solved.
sheryl37154 Guest
Posted
For those of you who have been following this string, 'outdoors' and I have had personal mail communication to sort out this problem. If "outdoors" theory was correct, then all our blood tests would be affected and give false results. Now the best outcome that can be relied on will be the results of the MRI.
So hopefully that problem is solved.
Guest
Posted
Not quite agreeing with you sheryl. Yes - I believe the MRI will be our best information.
On the other point - I think anything in the blood will vary according to its source. If it is manufactured like red cells - your body will replenish them - if it is vitamins / minerals your body would get them from the food or fat stores etc as per normal and replenish them. If it was a medicine or treatment your next dose will put back or any embedded source will continue to add to your system. However if it is something which goes into your system due to an illness eg PC - then it will 'seep' into your bloodstream again but the level which was there before is lower through vx and so it's a matter of so many points forward and then a bit back then again so many points forward and then knocked back with vx.
sheryl37154 Guest
Posted
Actually, I thought we were talking about haemochromatosis and iron overload. After vx, the iron is replenished into the bloodstream by the ejection of iron stored in our organs. That is why vx works for those with HH by elimination of iron from the body and reducing ferritin levels.
Our blood tests, other than those in Iron Studies and Hb, Hematocrit, possible MCV (although a high MCV is a marker for HH, and if you have HH, it mostly stays high), are not effected. We with HH are always having liver function tests, thyroid, full blood count (which include the above mentioned Hb, Hematocrit, MCV), routine chemistry, often hormones, and these are not affected by whether we they are before or after vx. And this would include PSA which is what you raised and we were discussing.
Medications are another thing entirely. A CRP test will usually indicate if you have high inflammation and/or malignancy.
Guest sheryl37154
Posted
I understand well enough the mechanism which iron leaves cells to replace that taken by Vx.
I understand about the blood tests and after seven years of his Vx I can see how they have altered for my husband.
PSA is a 'marker' - a substance created as a result of a situation and does not fit the other categories. It doesn't cause any condition but just flags up that something may be going on. If it is removed - some more will 'seep' into the blood stream but I am still unconvinced it is an accurate 'marker' when so much blood has been removed and it rises suddenly when Vx almost stops in comparison with previous years.
sheryl37154 Guest
Posted
A lot of blood tests are 'markers' but they are not affected by vx. No one has claimed PSA results as being a cause of any condition, same as other 'markers' do not cause a condition.
Drs have often said that a PSA test is not always reliable and it is the same for all men even those who do not have haemochromatosis and do not have venesections, and there are more of those than there are men having venesections.
I have attended 3 HH conferences and have personally spoken to HH researchers, both nationally and internationally, those being the top HH researchers in the world, and I assure you that if there was any substance to what you are saying, they would have noticed it long ago, and they would have done a formal study of it and published the results.
Perhaps you should put your theory about vx affecting PSA results to the UK haemochromatosis association, or just ask the question.
Guest sheryl37154
Posted
I sincerely hope you are right and that the lack of anything published in the way of research on the topic indicates no need to worry rather than a lack of investigation.
sheryl37154 Guest
Posted
Perhaps you might feel better asking your husband's haemotologist.
Guest sheryl37154
Posted
He attends a 'nurse-led' clinic away from the main hospital. His next appointment is in February. Contact with the specialists is limited to special appointments.
sheryl37154 Guest
Posted
In the short term, that leaves you with a telephone call to the UK haemochromatosis organisation.