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new to cancer/ appreciate help & input please
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An_243761 posted:
just posted this to another forum and hoping to be a long time member here and on the other forum as well....here goes :

I'm here in this forum on behalf of my brother, age 42, just diagnosed on 14 Feb with aggressive metastatic , stage 4 prostate cancer. It's a shock we are all still coming to terms with and we are finding the situation bewildering, largely because we are highly uninformed about cancer, what all the terms mean, the different types, stages, and treatments, and don't know how to interpret what is going on with him and how to deal with it in terms of understanding how bad it is, or isn't. After blocking it all out of his mind inititally, he and we are now waking up to the reality of this and need to know how to deal and how to go forward. He is now depending on us, wider family, to find out what we can and to guide appropriately, so this is an education for alll of us. By way of background, he is married with three children, the youngest almost four years old; and his wife has some severe health issues going on as well, so an overall difficult situation. He has worked pretty much all his life and gave the impression of being fit but has been going to the docs on and off with back pain, now diagnosed as cancer. We've managed to get together some of the medical records for the purpose of getting a second opinion and considering the possbility of treatment options abroad. The medical stats make no sense to us as at all, we simply do not know what it all means, so if anyone here can help to interpret all this we will be very grateful. He had the biopsy on or around 9 Feb. Prior to that severe back pain but no problems with mobility or balance. Since the biopsy he has deteriorated significantly - experiencing severe pain in hips/buttocks, legs, losing balance and mobility ( possibly some incontinence as well). Initially we all panicked and thought this is cancer/cancer pain and it's spread with the biopsy but some internet research suggests it could be the result of infection. Has anyone else experienced this? Is this "normal" pain post biopsy? The course of anti biotics has finished; because there was a lot of pain over the weekend he will of course contact the urologist today about the pain and see what he says. To make matters worse, the urologist, who was the first point of contact in all this, and the one to break the news, was not happy about us saying we may be thinking of getting a second opinion and asking for copies of medical records. And, post biopsy, some tablets that should have been given/prescribed were not prescribed and those tablets - we think -were to stop the cancer spreading. Five days after the biopsy the urologist checked what medication he had been prescribed and noted that this tablet had not been given or prescribed, and then gave it to him. He had the first hormone injection last Tuesday and sees a chemotherapist tonight. These are the results so far - please help us to understand these results and what it all means: MRI for back pain on 1 Feb: MRI lumbar scan - central disc herniation at L5/S1 level "impinging slightly on both S1 nerve roots" Annular bulge at L4/L5 - does not appear to be causing any nerve root impingement widespread abnormaility of marrow signal in all lumbar vertebrae and sacrum consistent with multiple secondary deposits view of pelvis shows extension of abnormal marrow throughout bones and in proximal femoral left iliac wing considerably expanded by presumed secondary deposits craggy prostate gland with apparent tumour extending beyond capsule on left side posteriorly some enlarged pelvic lymph nodes most likely due to disseminated carcinoma of prostate Radiologist Report, imaging on 3 Feb multiple lytic lesions throughout axial skeleton, largets within left iliac blade associated with soft tissue mass and left symphysis pubis no collapse of vertebrae enlarged lymph nodes, largest at right common iliac bifurcation 26mm diameter and in left para-aortic region 32mm diameter small consolidation within right mid zone, no evidence of pulmonary metastasis, no thoracic lymph node enlargement; no pleural effusions liver clear;cholecsystectomy noted; pancreas and kidneys spleen unremarkable. 10mm left adrenal lesion of uncertain significance large amount of nodularity within mesorectal fat. conclusion: bony metastases, largest within left iliac blade, amenable to biopsy primary not identified but suspect prostate given MRI right common iliac and left para aortic lymph node enlargement left adrenal lesion of uncertain significance mesorectal fat nodularity 9 Feb protate biopsy 10 Feb, histopathology report PSA90 Tier 4 + IHC/PP ( not sure if this is a clinic reference number or a result) right apex - core 15mm L 1mm D 1(1) a/e right mid -core 17mm L 1mm D 1(1) a/e right base - core 20mm L 1mm D 1(1) a/e left apex - 2 cores 15mm + 7Mm L , 1 mm D 2(1) a/e left mid - 2 cores 15mm + 7mm L, 1mm D 2 (1) a/e DjM 10.2.12 Jj 10.2.12 needle core biopsies all prostate tissue. sections show infiltration by adenocarcinoma Gleason score 5+5=10, present in all cores apart from those from right mid proportions ranging from 80-100%; extensive necrosis. immunostains to exclude neuro endocrine differentiation in progress supplementary: with immunostains tumoural cells are negative for CD56, chromogranin , synaptophysin and TTF-1,this excludes neuro endocrine differentiation weak but definite staining with PSA Lb 14.2.12 Letter 6 Feb from urologist to orhtopaedic surgeon PSA 90.91 ug/L imaging shows bony metastases in pelvis and abdominal lymphadenopathy history back pain;minimal voiding symptoms family history unremarkable may benefit from targeted radiotherapy 14 Feb letter from urologist to family doctor he is well and got over prostate biopsies well biopsies show adenocarcinoma Gleason pattern 5 chance this is neuro endocrine tumour, further staining being undertaken provisional histopathological stage Gleason 5 + 5 started casodex last week ( maybe this is the one that was delayed by five days post biopsy) next week will have first LHRH anologue injection, decapeptyl1. That's it. We do not undertsand it all and it is frightening. We want to undertsand all this and face it and deal with it. Then we can give the right support and talk through the options realistically. This is what we have in mind right now : to see professor Vogl at University Hospital Frankfurt to consider what options he can offer - this might include chemo embolisation and radiation ablation; we do not think these treatments are available in UK (London) which is were we are. But if he is started on traditional chemo/ radiation now , we are not sure if the 2 treatments can work alongside each other or whether we have to opt for one or other. Someone in the family suggested seeing a urologist in Germany who specialises in cancer - that's causing us a bit of a dilemma as we don't know which of the 2 would be best. Vogl isn't a urologist but he does the chemo and radiation so we're thinking maybe that's the best starting point for a second opinion and maybe he can go for a course of treatment - which we think is less invasive overall.Costs of course are a major consideration. If these treatments are not available in UK we hope there might be a chance of recovering these costs under the NHS, but don't know for sure. What are we looking at in terms of posisble treatement options/ best treatment options and what should we expect in terms of pain? Could the pain he now has be cancer pain? or is it from infection post biopsy which will clear with anti biotics? It's very confusing. Thank you for reading all this. Any/all input really appreciated.
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Basir U Tareen, MD responded:
Sorry to hear of your brother's diagnosis. You are doing the right thing by doing all your research and getting opinions from various experts.

This does sound like a very aggressive prostate cancer given his young age and the extent of metastatic disease.

Most experts would agree that hormonal therapy is the first rational step -- antiandrogen (such as Casodex) following by LHRH agonist injection sounds to be the correct approach.

The nature of the disease, however, is that he will likely become hormone resistant in the near future and given his young age he should be seen by an experienced medical oncologist who treats a high volume of prostate cancer.

He may be a good candidate for one of several trials which are evaluating newer drugs for hormone refractory disease.

Otherwise, once his disease is resistant to hormonal treatment, he would be a candidate for treatments such as Provenge, Docetaxol chemotherapy, and later abiraterone (after being treated w/ docetaxol)

If he is having significant pain in the back from the mets, I would definitely have him see a radiation oncologist who may help provide some pain relief by treating the lesions to the back/spine.

Best of luck,
Dr. Tareen
 
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Aking719 responded:
I'm sorry to hear of your brother's diagnosis. I know how devastating this news is. My father was just diagnosed in November of Stage 4 metastic Prostate Cancer at the age of 48. We found a very good Oncologist at The City Of Hope in Los Angeles, Ca, United States. Www.cityofhope.org. He started my dad on Casodex right away and Lupron shots every 3 months and another shot called xgeva every 4 weeks for his bones. My dad is also on a clinical trial. My dads diagnosis came after many months of hip pain. He was on crutches and bed ridden for for about 6 months by time they found his cancer. His whole right hip is full of cancer and he has spots on his ribs and spine. His pain in his hip went away almost immediately after starting treatment but it has come back a little bit recently. Cancer in the bones is very painful because your bones become inflamed. Dads doctor has decided not to do raidiation yet because his pain is so very little and is being managed well with hormone therapy. With the hormone treatment and the trial my dads PSA levels have went from 160 to 0.04. I highly suggest you get a second opinion with a Prostate Cancer Oncologist. There is hope for your brother! He is very young like my father and with the right treatment I believe he will start to feel better right away. If you would like you can follow my father's story at www.caringbridge.org/visit/michaelking48

Best of luck to your brother and his family! We will keep them in our prayers! Please feel free to reach out to us if you need more information. Sincerely, Amber
 
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borninspring replied to Basir U Tareen, MD's response:
Thank you Dr.Tareen for taking the trouble to respond. May I ask what you think about salvestrols? developed by Prof. Gerry Potter in UK - we are thinking of trying that.
He is currently on hormonal therapy and first radiotherapy ( 4 or 5 palliative sessions) start next week.
Thank you so much.
Kind regards.
 
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borninspring replied to Aking719's response:
Hi Amber
thank you for your kindness. I wish you and your father well.
We're probably going to try salvestrols - have you considered ? I am going to get in touch with you via the blog.
Thanks again.
Take care.
 
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akaipop3ps replied to Aking719's response:
Hi Amber:
What is the name of the Oncologist?

Thanks,

Mike
 
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Basir U Tareen, MD replied to borninspring's response:
Sorry, am not familiar with Salvestrols. In general, most physicians tend to be guarded in recommending non-FDA approved therapies or herbal/dietary supplemnts which are often not very closely regulated or tested.

As far as diet, we do know that in general a healthy diet high in lycopene (tomato products), soy and one that does not lead to obesity tend to be beneficial.

Best of luck,
BT


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