Feel like we've taken a backwards step

User

Posted 06 Nov 2014 at 21:18

Hi all,

Almost 2 weeks ago we saw a consultant to get my OH's full diagnosis and were told T3b N1 M0 with bone scan clear of cancer. We were told the treatment was likely to be hormone therapy for 3 months followed by radiotherapy to target the prostate and localised spread. We came away feeling as relieved as you can be and with some hope for the future, as we could see where we were heading.

Today we saw the Oncologist for the first time who was obviously considering my husband as an individual case which is good, but seemed to cast doubt over our original diagnosis. I wasn't prepared for this and found it very upsetting as I thought we knew where we were heading.

He now wants my husband to have a CT scan of his whole body to see if the cancer has spread to any other lymph nodes. It seems that the MRI scan could only show so much and only scanned his pelvic region? From the size of cancer found in the lymph nodes in his pelvis they now seem concerned that it may be present in other lymph nodes, hence the need for a CT scan. I don't understand why they gave him a score of N1 if they hadn't scanned his whole body?

We were told that if they find out that it has spread he won't be able to have radiotherapy and will just be treated with hormone therapy for the rest of his life. If it hasn't spread he will have 6 months of hormone treatment before radiotherapy instead of 3 months. If we join the STAMPEDE trial he may get offered other options which could include radiotherapy, and there is the chemotherapy route to consider.

Today has felt like a negative backwards step as I now feel we have no clear direction. We now have to wait for a CT appointment and up to 3 weeks for the result.

As always, I would really appreciate anyone's thoughts about all this.

Miss x

Edited by member 18 Nov 2014 at 10:30 | Reason: Not specified

User

Posted 07 Nov 2014 at 07:20

Dear Miss

This is the really awful and the worst bit. Waiting to find out further information.

My OH was exactly the same diagnosis and CT scan showed no further nodes.

Three years ago we were in exactly the same boat as you.

I don't know what to say, you just have to get through it, hope and pray that it is as contained as possible, but if not there are lots of treatments that they can do, that someone else may comment upon.

Be strong. Not easy.

So sorry that I cannot offer you more information.

I may have said before, that we did the STAMPEDE trial and found the additional appointments/contact a little reassuring.

Alison

Edited by member 07 Nov 2014 at 07:22 | Reason: Not specified

User

Posted 08 Nov 2014 at 02:00

Re you questioning the N1 - the 1 simply says that it is in the lymph nodes, it doesn't indicate how many nodes are affected. You wouldn't see anyone getting a T3 N6 M0 for example .... The N is going to be either N0 (no sign of spread to lymph), N1 (spread) or NX (not tested)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 08 Nov 2014 at 09:51

Hi Miss,

I've just finished reading the same book and feel the same.

I'm preying for you and your husband that everything will work out well for you both.

Steve x

User

Posted 09 Nov 2014 at 14:18

Strictly, the staging is ;

NX = Regional lymph nodes cannot or has not been assessed

NO = No Regional lymph nodes metastasis

N1 = Metastasis in a single lymph node, 2cm or less in greatest dimension

N2 = Metastasis in a single lymph node, more than 2cm but not more than 5cm in greatest dimension; or multiple lymph node metastases, none more than 5cm in greatest dimension

N3= Metastasis in a lymph node more than 5cm in greatest dimension

MX = Presence of distant metastasis cannot or has not been assessed

MO = No distant metastasis

M1 = Distant metastasis

M1a = Non-regional lymph nodes(s)

M1b = Bone(s)

M1c other sites

Perhaps some labs simplify this down in reports ?

User

Posted 18 Nov 2014 at 06:52

Hi Miss

It sounds like your husband and I are in a similar place, I was diagnosed on 6th nov 2014 with Gleason 9 ( or 10, they can't make their minds up,) t3bm1n1 but it's only in my lymphs outside my groin. I have probably been just where your OH has been and at first the quacks only offered limited treatment but now it's zoladex, some other hormone drug, chemo and then RT. It is a scary place but it sounds like you are doing what my wife is doing and being really supportive, I can't tell you enough how important that is for your OH although tough on you. Whilst we are both going to have a year of poo to contend with you must believe you will come out the other side, if you can get there (as I have now) mentally the world starts to seem ok. My kids are 9,14 and 16 so I know it's hard on them too, just try yo be as normal as you both can with them. I wish you were not where you are but hopefully it is a comfort to you and I that you are not alone and people are rooting for you. I am not an expert in anything PC but I have changed my diet and am exercising as much as I can as I believe that the stronger and fitter I am before chemo the easier it will be. True or not mentally that is a great help now. Will read how you get on,.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 19 Nov 2014 at 16:25

Do you have a Prostate Cancer Support Group local to your area. PCUK or Tackle Prostate Cancer - www.tackleprostate.org should be able to tell you a group nearest to you. The community site does, indeed, give great help to many but it can sometimes be useful to talk face to face rather than via a keyboard. Find out and give it a try.

Steve Allen

Chairman, Reading Prostate Cancer Support Group

www.rpcsg.org.uk

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User

Posted 07 Nov 2014 at 07:20

Dear Miss

This is the really awful and the worst bit. Waiting to find out further information.

My OH was exactly the same diagnosis and CT scan showed no further nodes.

Three years ago we were in exactly the same boat as you.

Be strong. Not easy.

So sorry that I cannot offer you more information.

I may have said before, that we did the STAMPEDE trial and found the additional appointments/contact a little reassuring.

Alison

Edited by member 07 Nov 2014 at 07:22 | Reason: Not specified

User

Posted 07 Nov 2014 at 09:01

Hi Miss,
I've sort of been there. They wouldn't consider my treatment path until I'd had a CT scan, even though the urology team had virtually mapped my path out already, so I'd say it is not unusual.

All the best with the scan and results.

Kevin

User

Posted 07 Nov 2014 at 09:27

Hi,

Understandably you just want to get on with treatment, and I fully understand the waiting game, Im sure the team just want the full picture in order to target the cancer the most effective way. My Dad has just completed two years of the stampede trial and as a family were reassured by the frequent monitoring. He had significant lymph spread and so had hormone therapy for about 6 months in order to shrink the glands so that the radiotherapy could be more specifically targeted.

I do hope you get the necessary answers soon.

Best wishes

JO.x

User

Posted 07 Nov 2014 at 12:05

Sounds like a thorough Oncologist doing the correct approach. Your husband is on the appropriate treatment for this time ( HT ) so although frustrating with the waiting , you are loosing nothing. Better to get the full picture rather than take the inappropriate treatment path.

User

Posted 08 Nov 2014 at 02:00

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 08 Nov 2014 at 06:09

Thanks very much everyone, I feel much more reassured now that I have read all your comments and realise that the oncologist is just being thorough and going for a fuller picture. I guess I misunderstood that the scores given by the urology team weren't the final picture and still had the possibility to change, no one pointed this out. Thanks Lyn for explaining the N score, that makes complete sense. If they know it is in the lymph nodes I should be relieved that they are scanning all of them to get the full picture.

A couple of weeks ago I started reading 'I Left My Prostate in San Francisco Where's Yours?' just to read about someone else's experiences in coping with all of this. One bit really stood out for me with regards to all the people on this forum and the support we give each other. Regardless of whether you believe on God or not, I thought this quote summed us all up:

'Praise be to God the Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in trouble with the comfort we ourselves have received from God'.

Thanks guys for all that you do to help people deal with all of this x

User

Posted 08 Nov 2014 at 09:51

Hi Miss,

I've just finished reading the same book and feel the same.

I'm preying for you and your husband that everything will work out well for you both.

Steve x

User

Posted 09 Nov 2014 at 14:18

Strictly, the staging is ;

NX = Regional lymph nodes cannot or has not been assessed

NO = No Regional lymph nodes metastasis

N1 = Metastasis in a single lymph node, 2cm or less in greatest dimension

N2 = Metastasis in a single lymph node, more than 2cm but not more than 5cm in greatest dimension; or multiple lymph node metastases, none more than 5cm in greatest dimension

N3= Metastasis in a lymph node more than 5cm in greatest dimension

MX = Presence of distant metastasis cannot or has not been assessed

MO = No distant metastasis

M1 = Distant metastasis

M1a = Non-regional lymph nodes(s)

M1b = Bone(s)

M1c other sites

Perhaps some labs simplify this down in reports ?

User

Posted 18 Nov 2014 at 06:52

Hi Miss

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 18 Nov 2014 at 10:29

Hi all,

Quick update, my OH has his CT scan this Sunday 23rd Nov. Wow, I didn't know they did that sort of thing on a Sunday!
We have just booked our summer holiday, so trying to stay positive and look to the future.

Miss x

User

Posted 19 Nov 2014 at 16:25

Steve Allen

Chairman, Reading Prostate Cancer Support Group

www.rpcsg.org.uk

User

Posted 19 Nov 2014 at 19:55

Hi dear folk

Early 2013 I was Gleason 4+5 in 10/10, T3b N1 M1 and the onco gave me this as "it's not all good news"...

and here I am, after RT and hormones etc. Only 2 years since diagnosis, but probably 4 years or more, into the disease development. Many on here are multiples of this life-span. Do not panic, more you need to 'hunker down' to learn and live thru' the hard stuff. If you had a car with a nasty knocking sound, you'd move heaven and earth to find the mechanics who could sort it?

Now, I begin to understand what the confusing medical shorthand all means, but what makes it real is the continual greeting by old chums 'Gawd you look better' - well, I ask, how bad did I look before? (Apparently, awful, but then, I ain't pretty).

Everyone is different, but a recurring theme is how tired and weak the disease and the treatments make you. Me too. Yet today, I replaced the reverse lamps in a VW T4 camper truck, and let me tell you this is a job for an 18 year old SAS captain, the bl**dy thing is a write off if ever the winker bulbs need renewing! So, pleased with myself. Have just proved that the lack of testosterone (due to Zoladex and Bicalutamide treatments to starve the cancer cells) do NOT totally remove your drive to overcome problems. A very great deal is in the mind, a fair bit is in the weak wobbly legs. So ok, get into a new position with more leverage, if you have to use a stick, but just get on with it. However limited your walks in the day, be sure you do one.

Straight away on diagnosis I agreed to Stampede, later to the genetic survey; no matter what my story becomes, please let me be some use to those in future. Luckily I am plotted by some computer somewhere to be Stampede Group "H" so I got radio and stuff. I dunno if I would have been brave enough to be a "watchful waiting" group instead, luckily I didn't have to find out.

Be sure you are at a centre of excellence, top oncologist team, best advice. MacMillan are marvellous, do call them.

Sorry this is confused & rambly, but my feeling is, that everyone feels like this at first; this web site helps to realise that one is not alone, there are wonderful contributors out there with real knowledge (unlike me) and real empathy. Its a bit like prayers at a cathedral: you may not believe but the atmospherics and group feelings sure do help.

Kindest regards & fingers crossed, b0b

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