New to cancer, please help/input appreciated

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.

 

 

 

 

 

 

 

Post Edited (WORKING MAN) : 2/27/2012 3:32:17 AM (GMT-7)

That is a rough diagnosis and findings in such a young man, but others have been diagnosed similarly but these are in the smaller percentages of overall PCa patients, and I got to join the high risk club back in 2002 with lousy stats and hit it up front with a total assault which probably has bought me alot of time thus far. Suggested readings and info and patient comparisons:

www.yananow.net   (see other patient scenarios w/emails too and plenty of info on PCa) yananow=you're not alone now (group)
www.paactusa.org   (on line newsletters for advanced disease patients)
www.hrpca.org   (proven treatments read about what can be used)
www.hypertext.org (PCa info site)
www.prostatepointers.org   (group joining and PCa info shared)

You have a very serious prognosis and hopefully will look for an experienced PCa oncologist or one open minded enough to consider more than chemo or Lupron alone. Right now your goal should be to assault PCa asap and buy more time. Untreated you don't want to hear about that prognosis. A story to read is Robert Young at www.Phoenix5.org     he was diagnosed with a psa over 3000 and with bone pains went to the doc and found out why (had no idea up front), he lived 3 years in fighting this. He was diagnosed way late and years ago now, less options for treatments back then, he made us the first PCa laymens dictionary and it got published.  He laid down a foundation for other patients and furthered the education process on the internet as did some others I know about from 2002 era.

Right away I don't like your doc and he didn't give you casodex prior to an injection (LHRH drug)?????

Post Edited (zufus) : 2/27/2012 6:58:32 AM (GMT-7)

Firstly,thanks so much for all these responses. First appointment with chemotherapist is tonigth and hopefully things might be a little bit clearer then.

We do need to make a quick decision regarding Vogl as we have made a provisional appointment for Thursday morning this week.

What drew me to Vogl - based on so very little that I know right now is :

a) it is advanced aggressive cancer
b) pain relief may become the most immediate concern and need the most effective treatment
c) worried about the impact of traditional chemotherapy and radiation - physically, mentally, emotionally
d) chemo embolisation sounds non invasive with minimal side effects ( will enquire tonight if available for this condition in this country - UK/England - London to be specific)
e) radiation ablation - from the little I can understand - is targetted at the tumours , heats them up and destroys them from the inside - providing pain relief + killing the tumours

so whilst we could see that a prostate cancer specialist was the logical choice, we started off looking at this really from an immediate potential pain perspective and thought vogl might be the one to offer less invasive treatment with minimal side effects - there has been mention alreayd of just 3 or 4 treatment sessions as an out patient to achieve some results.

GP visit this morning to discuss pain - GP is against us going to Germany for a second opinion.

I appreciate a second opinion may not say anything significantly different, but keen to explore pain relief/ alternative chemo.

some info about chemo embolisation
http://www.jansjourney.co.uk/chemoemb.htm

You need to call Dr.Vogl to ask if they treat metastasis to the bone from PC with radiofrequency ablation. The page you quote points to a lung cancer website. A phone call or e-mail could perhaps save you a trip. And I highly doubt that "chemoembolisation" would work in PC that has spread.

working man  very sorry for your brother. he has a serious condition,but there is much that can be done for him.(i know a patient who had pc in every bone in his body and is cancer free today after 20 years.(sidenote the chemo was very hard for him)

first advice-- have him see an oncologist- much more important than a urologist at this point(oncologist have more options)

hopefully he can have other treatment before chemo

provenge is very exciting but cost over $300,000 (check it out i'm trying to get on-they take out cells and re-engineer them and  then put them back into you)

metafurin(excuse the spelling) metafurin is used for diabetes-study suggest that it helps twofold

first they hope lowering sugar levels will help  and secondly there is a biochemical reaction that hopefully will

fight pc

i've had  advanced  pc for over15 years with a gleason 9. psa is important but some patients who had good psa numbers did poorly  and some patients with bad numbers did well. everyone reacts differently

i don't fully understand the labs but it seems the cancer has mestasized. i guess they are giving him lupron to shrink the tumor as much as possible and then further treatment after a few months.

stay positive and remember- an oncologist is an expect on cancer while a urologist is an expert on organs.

both are important but in my opinion an oncologist is the one to rely on.

god bless carrig from boston  (ps-be careful of internet info)

thank you , thank you, thank you everybody - this is very helpful to us

 

In answer to Alf's question, he started out with a BUPA referral at a small east london private  hospital  - got BUPA cover through his work. The chemotherapist is at Royal London hospital.

is this hormone refractory pc?

darn i think my reply didn't go through

working man i'm sorry about your brother. it is a serious condtion, but much can be done for him.(i know a friend who had pc in every bone in his body and has been cancer free after 20 years after chemo.( the chemo was very difficult but it saved his life)

my first advice is to seek an oncologist. while an urologist is important, he is not a cancer expect as an oncologist is. and oncologist are involved with trials and have more treatment options

 than urologists.

my second advice is to see if there are other treatments besides chemo. i have locally advanced pc and i'm trying to take provenge. it is a revolutionary procedure that takes good cells, re-engineers the cells. and then puts the cells back into your body. i probably won't be selected because it costs $300,000.

another exciting trial is taking large doses of metfurmin which is used for diabetes. the study shows that lowering sugar levels helps in pc, and also there is a biochemical reaction that fights pc.

from your post it seems he has a very aggresive cancer that has metastized. i think they gave him meds before injections of lupron to reduce as much as possible the size of the tumor. this is basic hormonal treatment. shrink as much of the cancer and then go on to furthur treatments.

psa levels are important but do not tell the whole story. some patients with great psa numbers do poorly, while some patients with bad numbers do well. everyone reacts differently. pc cancer is like no other cancer. it is not like breast cancer or colon cancer where similiar patients have the same prognosis. it is truly a homogeneous cancer. we are not statistics.

iv'e had advanced pc for over 15years with a gleason of 9. my entire right side of my prostate was a tumor that had broken through the gland. i have been strickly seeing an oncologist. i use my urologist for urionary problems.

your family and your brother are in my prayers. please have your brother see an oncologist before he decides on treatment.    carrig from boston

 

Carrig, thank you for taking the trouble-your ealier message did come through, but I am so grateful to you for going to the trouble of re-writing/ re-sending.
John T,Todd, Alf, Zufus, Special Lady,gams,thanks - sincerely.

Have sent some revised questions to Vogl/ awaiting his response and will post.
You have all helped to narrow down the issues. I think we are looking at Vogl purely and simply for pain relief. IF we decide to go ahead and see him on Thursday, it will be with a view probably to asking him to liaise with the experts here in London; staying here for now makes sense....

will consider going to Royal Marsden / Royal London for urology -

I don't think anyone has mentioned the list of books suggested by members of this forum that do a good job of introducing folks to the compllicated world of prostate cancer. You can go to this link for a list, and I would encourage you to check the local library or book shops and start learning all you can: https://www.healingwell.com/community/default.aspx?f=35&m=828854

As others have pointed out, your brother's situation requires care beyond that expected of a urologist. An oncologist specializing in the treatment of advanced prostate cancer would seem to be the way to go. Best of luck to you, your brother, and your entire family. Please stay in touch, and we'll keep you in our thoughts and prayers.

In regard to your question about bicarbonate of soda and maple syrup, all I can say is "Wow!"  I cannot believe the junk that circulates around the internet and lends false hope to people battling deadly diseases.

Prostate cancer is a serious, malicious, deadly disease and must be treated as such.  Folk remedies just are not going to cure this illness.  I wish it were so, but please don't fall for this baloney.

I wish organizations such as the American Cancer would have a section on their websites debunking these "remedies" that offer false hope of an easy cure.

working man   correction  provenge is the only fda approved treatment for prostate cancer in america that uses your immune system to fight prostate cancer  sorry about the missinformation in previous post

He has decided not to go anywhere for now and is feeling very low after meeting last night with the chemo.....has decided to stay put, largely because of the pain, have the bone scan/s and then 4 or 5 sesssions - soon -  of palliative radiotherapy. So the issue of going to Germany is now on hold. Obviously, it's his decision at the end of the day ,and no one can argue with his pain or say what one should or shouldn't do.

 

will investigate provenge and see what that's about and whether it's available this end.....so glad you got approved for it and hope sincerely it works for you.

 

still persevering with adjustments in diet - surely that can only be a good think clocknut - to work on being as healthy as posisble/being fit for harsh treatment,  and aiming for a better alkaline/acid balance. Don't  know an awful lot about it, and take your underlying  point there's no scientific proof / but we do believe in working on diet to supplement the other treatments going on and believe also that diet may be a  factor behind the cause. But who knows, only God above. A real test of patience lies ahead. And surely a lot of hope.....despite everyone saying there is no cure. There are survivors.