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Husband newly diagnosed and with lots of questions

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Posted 11/26/2011 4:32 AM (GMT 0)
Hello to all,

Isn't it amazing how when "adversity" strikes, the internet is almost the first port of call for answers, information and support. 

I found this site when looking for some information to assist me with digesting exactly what my husband is faced with and how I will be of most value to him.

My husband (65 years of age) recently had a biopsy for a suspicious rise in PSA (from about 4 to 8 in a couple of months), and an equally suspicious firm feeling prostate during the urologist's examination.

It was a 12 core biopsy, and unfortunately 11 of the 12 cores displayed gleason scores of 9.  One core showed "benign prostatic tissue".   Adenomcarcinomas were evident in between 70% and 95% of each of the positive cores. 

There was also evidence of perineural invasion.

As you can imagine, we have spent the last few days scouring the net for all available information.  Both of us are keen to know what to expect and how is the best way to make decisions.  Husband is due to have a bone scan and a CT scan in 2 days time and of course this will add some more information to our growing file.

I am aware that a score of 9 is not good, particularly when some of the cores showed 95% cancer.

Also, in many of the cores, the first number of the gleason score is higher than the second number, which I now know is also not good.

I would like to hear from others who have had similar scores as to their outcomes, preferred options, advantages and disadvantages etc.

We live in Queensland, Australia, and I notice that although there are some others in the forum also from Australia, most are from the USA..... not that this is in any way relevant.

Most curiously, my husband also had an aggressive malignant melanoma (level 4) excised only some weeks ago and is still recovering from this.  So you can see, we have had a double whammy.  I am curious to find out also whether these two instances of cancer are somehow related. 

Obviously we will be talking lots with specialists and with our own gp (doctor) who is always available and is extremely helpful.

I look forward to hearing from you and sincerely wish you all well in your own endeavours and search for knowledge and support.

Posted 11/26/2011 5:24 AM (GMT 0)
yaamba, welcome to HW Prostate Cancer group, sorry you need us, but glad you found us. You are among many wives here writing on behalf of theirs husbands.

for starters, your husband's diagnosis is pretty serious, especially with a Gleason 9, and that much cancer found in 11 of 12 cores. despite saying that, don't think for a moment that there is not hope for him

yes, we have others here on a regualr basis from australia, we love them all!

the ct test and the bone scan are customary for the most part at this point, and for most men, usually come back negative for bone mets. we can hope the same for your husband.

its unlikely that there is any connection between the two types of cancers, just bad luck dealing with both of them.

feel free to ask all the questions you want, take the time to learn about this cancer, and if you ever need to vent, please feel free to do so, we all do at times.

good luck to you and your husband, you are most welcome here.

david in south carolina, usa
Posted 11/26/2011 6:10 AM (GMT 0)
Hi Yaamba, thought that was a play on Yamba NSW, but cant be if you live in Qld.
Dare I say welcome to our club, lots of info here, and great guys and girls to share with. There's a few aussies on here now, but not many in Qld, mostly NSW and Vic.
Yes by reading your post you certainly have some challenges ahead of you, but nothing that cant be worked out, just stay positive. I have attached a link below of a web site here in Oz, which helped me immensely when I was first diagnosed in Nov 2008.
Check it out and press the "Dont Panic Button"

Cheers Kev, Gold Coast Qld.

http://www.yananow.org/
Posted 11/26/2011 6:58 AM (GMT 0)
Thanks Kevin,
No, not NSW, but the best one, the sunshine state.... mind you having said that, I wonder whether it should be renamed the Melanoma state!!!!

Thanks for the link to yananow. Believe it or not I found this a day or so ago and have already gone through many of the stories, particularly those linked with a Gleason score of 9.

We are both extremely positive and optomistic... and even have found a few laughs in this whole thing.

I really do appreciate you taking the time to respond with such heart warming words.

cheers
Posted 11/26/2011 8:48 AM (GMT 0)
Hi, I am another wife and also a newcommer from the great land of Aus! We are in Vic and my OH and I have just arrived home this afternoon after his Radical Perineal Prostacteomy. He had a T1C tumor with a Gleason score of 9 (4+5) PSA of 8.1 He only had 3 positive cores in the biopsy and the CT and Bone scans were clear so surgery was the best option for him. We are just waiting for the Path report which should come in on Monday. The postate was not irregular on the DRE but upon removal there was some lumpiness in the frontal lobe so the Surgeon removed a larger margin in that area.

OH is doing amazingly well, he was alert and on minimal pain meds after surgery (wednesday) and to date has only had 4 Endone for pain, 2 of which were for the 3.5 hour trip home today, apart from that he has only had a few panadol to treat the discomfort. He is coping very well with the leg bag, doing it all himself and also showering etc on his own with just minimal interventions from me (ted stockings, socks and drying the wound site) I am a nurse so keep telling him to take it easy but I guess it shows the skill of his Surgeon as well.

I hope you can find a solution that helps you and your husband because this is definately not a journey that is just "theirs" it effects us women as well. My Oh is 57 and I am 41 so it is something not a lot of my friends have had to deal with. We had 3 aims when we were diagnosed, 1. Survival 2. Continence and 3 .Erectile function . Survival is number one, any thing else is fixable.

Good luck and this forum has helped us understand the journey that none of us want to be on , but we are so one in all in.xx

Posted 11/26/2011 9:44 AM (GMT 0)
Welcome Yaamba and husband. I'll refrain from any "down under" jokes given it's down under where we all have problems.

Yes. Gleason 9 and lots of positive cores is not at ther good end of the scale in as much as there is any Good End with PCa. But bear in mind that a core that is 90% doesn't have to mean that the gland itself is 90% full of cancer, it may just be that all the cancer is located near where the biopsy needles went in.

Despite all the guys from the US here there are plenty from OZ. (I'm the only guy here who lives in the Netherlands - but am actually a Pom)
Have a look at this thread which lists where guys (and wives) are from as it might help put you in touch with a few more local people for help and support in OZ:
www.healingwell.com/community/default.aspx?f=35&m=2237708

Alf
Posted 11/26/2011 11:20 AM (GMT 0)
I am another wife here from Australia, living in nsw.
My husband is 53 now and I am 40.
He was a Gleason 7 and had his surgery a year ago.
One week before the surgery he found he had a nasty squamous cell carcinoma on his hand. This is not in the league of a melanoma, but it just added the stress to a already stressful situation.

The best adviser can give you is educate yourself, read books on the topic ( Patrick Walsh, dr strum for example have written great books that I ordered online. In addition, if anything does not make sense, there is a brains trust here of people who are supportive and can help you.

This journey is a journey for both of you. But as the website Kev sent you to says "you are not alone"...

Regards,
An
Posted 11/26/2011 12:38 PM (GMT 0)
Thanks An,

It certainly is good to hear from you, and I have taken the advice of others too in this forum and ordered Patrick Walsh's book last Thursday. I didnt know if I could get it in Australia, but found it online at QBD (Queensland Book Depot). Hopefully it should arrive by tomorrow.

My husband had also contacted the Cancer Council and they were wonderful..... sent lots of reading material, including an extremely comprehensive, albeit general book about Prostate Cancer.

We are not sure exactly what to expect from the bone scan and ct scan as I have read from others in other threads that unless tumours are fairly big they might not necessarily show up on the scans. Although getting more bad news is not what we want, by the same token, I dont want the medicos to miss anything that might complicate things later on.

It would be helpful too for us to hear from others in Australia with similar scores (not that I wish this on anyone else), but forewarned and all that would help us to know what might be coming up and how things are done here in Australia.

My father in law also had Prostate Cancer. He was diagnosed after a short illness with a very aggressive and serious situation at the age of 90 and told he only had a very short time (days) to live. He did pass away, but not till he was 103 and then it was from other causes. So my husband comes from sturdy stock and has his dad's strength and positive outlook.

I am still coming to grips with the language used in pathology reports, and interpreting the abbreviations that people use in the threads. Its been a steep learning curve, but I am determined to grasp as much as I can so that I can ask the right questions when I need to.

Also we live in a regional centre and do not really have the facilities of the capital cities, so it appears that we may have to travel to Brisbane on many occasions. Luckily we have friends and family there who will be able to help out too.

Thank you for your reply, and I wish you and your husband well.

cheers
Posted 11/26/2011 12:43 PM (GMT 0)
Hi Yaamba

Welcome to our family here.

First thing I suggest be careful on what your internet searchs lead you too, there is a lot of stuff out there that is wrong an or outdated.

Other than that I really have nothing to offer other than our regrets you and your hubby have to be here - now that you are my warmest welcome.

Bud
Posted 11/26/2011 3:42 PM (GMT 0)
Hello Yaamba...sorry to hear of your husbands results...lets hope the bone/CT scans are clean. I had similiar numbers...gleason 9 with 10 of 12 being cancerous and PSA of 94. I also had clean bone and CT scans. I opted for the HT with 45 radiation treatments and am hoping that worked. The Lupron alone has my PSA down to .77 and getting lower so theres hope for us "9" guys.

The internet is definately a powerful tool...but I would take the advice of Bud.....be careful what you read. This site is filled with lots of Knowledge and experience and another good site is yana. You may want to check that one out also. This site alone has helped me select my decision for treatment as I first thought my doctors wanted to do whats best for me instead of making a buck off of surgery. Ended up firing my first 2 doctors beofre I went to a bigger city and found one I trust. But I would have probably bought off on surjery if not for many here who helped me...I now know I selected the best treatment for me.

Good luck with your journey and wish you the best....chris
Posted 11/26/2011 4:46 PM (GMT 0)
yaamba,

You can see my signature ... gleason 9 and a relatively high PSA. I went with a combination treatment plan. For high risk situations, you are likely looking at more than one treatment modality .. i.e radiation + HT or surgery + radiation, etc. Good luck with your scans and appointments. Be sure and come back with status and questions.

Posted 11/26/2011 5:18 PM (GMT 0)
It looks like you have done a good job at starting to educate yourselves. My wife was an enormous help to me. She made my doctors appointments and went on every consultation with me. We both took notes and kept them in a binder. We would compare notes after the meetings, it’s hard to listen, ask questions and take notes. We would have all our questions written down in the binder before we went in and made sure that the doctor took the time to answer all of our questions. Take some time and explore all your options and get the best doctors you can fine. Although we have different Gleason scores and you can follow my journey in my signature. I think every journey is unique I wish you the best with yours.
Posted 11/26/2011 6:05 PM (GMT 0)
Welcome, Yaamba and husband & Rolydog and her husband!  I am so sorry you need to be here, but there are some wonderful people here who will provide support and knowledge!  As everyone has mentioned - Knowledge is Power!  Wishing you the best on this unpredictable journey!

Others can help you with posting your signatures after each message.

One nice thing about this forum is that there are quite a few LADIES that post here!  My husband did the dance with DaVinci (robotic surgery) and for us it was the best move possible. My husband is said to be cured, but we look at that as a 99% possibilty.  His life is complicated by other health problems.  Before the surgery, he had (and still does) extreme testicle pain.  Cancer has been ruled out and he is going once a month for pain injection procedures.  No luck yet, but we remain hopeful.  He also has digestion problems which has meant a change in diet.  However, we do consider ourselves blessed! 

My friend, An is here too!  Hello!  We need to catch up!   I hope Paul is doing well! 

Blessings to all,

Aimzee

Posted 11/26/2011 8:35 PM (GMT 0)
Ahh! found ya, just Nth of Rocky, I flew up there couple of months ago, to purchase a ute to drive home. Very dry when I last saw it from the air.
But one things for sure, they breed em tough up there, and your Man's
gunna do just fine................Cheers again Kev.
Posted 11/27/2011 12:15 AM (GMT 0)
Hit it as hard as you can with everything you can...Walsh's book will illuminate the darkness. With your numbers, time is important..Don't let them put you off until after the new year. Get things moving NOW if you can...

Ask about a Brachytherapy / IGRT combination treatment.. Especially if they don't offer surgery...
Posted 11/27/2011 5:28 AM (GMT 0)
Hi, I just wanted to wish you good luck and send you positive energy. take care.
Posted 11/27/2011 11:48 PM (GMT 0)
Hi Yaamba

Sorry to hear about your husband but welcome to this site. There are a lot of experienced and knowledgeable people posting here and they are a good source of support. Once you get the Walsh book have a good read and you and your husband will be pretty well educated on this disease and the options for treatment.

I live in Brisbane and was diagnosed in May this year (you can read my signature below for all the details). I had robotic surgery in July and have recovered well. Currently I am in what we call here the “zero club” that is, my PSA is below detection level post surgery. The real acid test for me will be in the next few years. I am hoping my PSA will remain undectable for the foreseeable future, but there is no certainty it will. There is no “one size fits all” with this disease as you will no doubt find out, but the best advice I can give you is to educate yourselves as best you can and then you can both make informed decisions on treatment.

I hope your husband’s CT and bone scans come back negative. Depending on what options you are offered with respect to treatment, if you elect for surgery I can recommend Dr Coughlin. He performed my surgery here at Brisbane’s RWBH. I’m not sure if it is appropriate for me to give his contact details over the net, but you can look him up easy enough.

Best of luck to you and your husband and keep us posted as to your progress.
Posted 11/28/2011 3:06 AM (GMT 0)
Thanks Ozbob,

We have just returned home from the bone scan and ct scan.

We cannot see the urologist until next Monday as he is away until then, and I am getting anxious that with Christmas coming time will slip by and nothing will be done till new year. You know what its like here at Christmas time..... everything shuts down. Last year you might remember many areas in Queensland were isolated for a long time due to flooding. I would hate for that to happen again and not be able to get to Brisbane when we need to.

I notice that you were diagnosed in early May, but did not have surgery until mid July. May I be rude and ask why the delay?

Also, how many of the cores of your biopsy were positive, and were you given a choice of treatment or was treatment recommended for you?

I hope I am not being too personal.


cheers
Posted 11/28/2011 4:36 AM (GMT 0)
The time between biopsy and surgery MUST be at least 8 weeks, and better more, according to my uro/surgeon. From early May to mid-July would actually be rushing the process beyond reason as I understand his opinion.

There should be time allowed for a second surgical opinion, and opinions from radiation oncologists, seeds specialists, as a minimum.

Posted 11/28/2011 8:17 AM (GMT 0)
Hi Yaamba,

The recommended time is certainly 8 weeks, however I had to make a choice being only 6 weeks out from x-mas. I ended up having my surgery on the 24th December, only 6 weeks from biopsy. I think 6 weeks is certainly the absolute minimum, I was very lucky to come out with a good path report, under the circumstances. I had my surgery at St Vincents Hosp in Sydney, by well known surgeon Dr Phillip Stricker. Others here on the forum also had their surgery at the same clinic. The reason I mention this is, it may be worth a call to see if they are still working through the x-mas holiday's, unlike other clinics that will close. You may be lucky, should you decide or are able to have surgery.
Cheers Kev.
Posted 11/28/2011 8:47 AM (GMT 0)
Hi Yaamba,

You are getting plenty of good advice here. Like Kev, paul my husband did his op with dr Stricker. One thing I learnt pretty early with prostate cancer is experience is very very important. Pick the best, the most experienced doctor you can afford in the particular specialiality you need eg a urologist specializing in prostate surgery or an oncologist specializing in prostate cancer, even if it means that you have to travel far away. In a few weeks the travel is forgotten, but the difference in side effects between a experienced surgeon and one which hasnt done many radical prostatectomies can be very significant.

Don't be afraid to ask your doctors the tough questions, for example, how many surgeries have you done, what is the incontinence rate of your patients. You should have the tough list of questions for radiation or hormone therapy if that's the way you go.

Good luck Yaamba, please know that we are here for you.

To my dear friend Aimzee, it has been a while. Sorry that Ron still has the testicle pain. And the digestion problems. Hope you are doing well and enjoying the grandbubs. We are good, down to six month PSAs and hoping for the best in February when he has his next one.

An
Posted 11/28/2011 11:48 PM (GMT 0)
Yaamba

As already stated, the period from biopsy to surgery is 6 weeks minimum.

Regarding my biopsy, from memory (I don't have my biopsy report to hand) I had 6 out of 12 cores positive for cancer. Most were G7 but two were G9. As you can see from my subsequent pathology report, the final grading was a G7 (4+3) with Tertiary 5.

I was offered radiation, or surgery, but I thought that surgery was my best option, given the high Gleason score and also I didn't like the thought of daily radiation therapy. Surgery also removes the primary tumour and I just felt better knowing that it had been taken out.

Dr Coughlen has a lot of experience in robotic procedures and I was very pleased with my outcome. I am 99% continent, ED about 75% and my PSA at the moment is non detectable. I have recovered from the surgery and I am doing all my normal activities. I still have a bit of a pain in the right Vas Deferen, but this is slowly receding.

Treatment is a personal choice for most of us, so I hope you and your husband will be able to make an informed choice and one that you are both happy with.
Posted Yesterday 7:19 AM (GMT 0)
Yaamba, it is amazing when you find so many here from your country, but you received recommendations for a doctor!   I wish your husband the best as you two are making this important decision!  My husband found out he had PCa in April and his surgery was in August.

An, thank you for the message.  The holidays will be a busy time for us.  If Ron was scheduling his surgery for Dec. - after Christmas Day would be the best.  Personally, I thought having their surgeries in the summer worked out in that the guys could wear shorts.

Posted Yesterday 10:06 AM (GMT 0)
Hello all,

My husband hung around at the Xray place today like a bad smell, and were able to pick up the films/summary of the Bone Scan and the CT scan. Even though the Urologist is away till Monday, of course we opened the envelopes (right across the flap that states in big bold letters "To be opened by referring doctor only").

Pleased to see that nothing of any significance there in either scan. A bit of arthritis etc., but that's ok. So when we see the Urologist on Monday, we will have a list of questions ready for him based on what we have read, and the results of the scans.

I was a bit annoyed that when I checked on the order details of the Patrick Walsh's book I had ordered online, to find that there are no books in stock at the QBD, even though their site suggested differently. I rang and gave them a serve for stating that the book was in stock when in reality they would have to send over to the USA to get it, and that it could takes a month or so. I cancelled the order and will look elsewhere. Are there any Aussies out there who have been successful in purchasing the book locally, or do all copies come from America?

We have also had some good recommendations from others we have met who have been highly appreciative and happy with the surgery performed by a few doctors in Brisbane. So, if this is the course we decide to take, at least we have some names to go on.

Now that I know that there should be a lapse of time between biopsy and surgery, I am really sorry that we did not opt to have the Prostate biopsy much earlier. We had to decide between surgery for Melanoma or biopsy of Prostate as the both could not be done at the same time. The Melanoma situation appeared a bit critical as a fairly big black mole (about the size of a 5c piece) appeared over a very short length of time.... months! So we thought we had better act on that first as Melanomas can be extremely treacherous and quickly get out of control. As it was, they excised a Level 4 (not good) melanoma, so we were pleased to see it go away.

I feel we are making some headway at last.....
Posted Yesterday 11:08 AM (GMT 0)
Hi yaamba, I bought the book from "the book depository" in the UK, they don't charge postage to Aus and the book arrived in a week and a half. Also you can pay in Australian dollars.

I notice second and copies are also selling on eBay, I just found a seller called treeet on eBay and the item location is Melbourne.


Hope this helps.

An

Post Edited (An38) : 11/29/2011 4:16:10 AM (GMT-7)

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