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Confusion over diagnosis

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User
Posted 22 Aug 2020 at 20:03

My husband Was diagnosed in March and has been told he has advanced pc. He’s had an MRI, biopsy, CT and SpectCT scan. The consultant told us after the last scan (and is confirmed by his letters) that It showed increased uptake in sternum suggestive for metastasis. She showed us the scan which showed a medium sized white area on his sternum. 

A couple of days ago he had his latest consultant appointment but it was a different person. Unfortunately I didn’t hear the conversation but she told him that the scan isn’t conclusive and he might not have mets other than in lymph nodes. He is very happy about this and hopeful that the cancer hasn’t spread to his bones but he’s not really sure what basis her ‘diagnosis’ was on. 

I have felt since his diagnosis that doctors/consultants never tell you the whole details, even though we’ve asked.  At the beginning, a possibility that cancer was in his lymph nodes turned out to be - when we received a letter from that consultant - a long list of lymph node involvement, all of which we had to google to find out what and where they were. 

I’m very concerned he’s been given false hope by this latest consultant. Is it possible to have what I’ve described that isn’t cancer? We’re both realists and just want facts not false hope. If it is possible should he ask for another Spect CT scan after chemo? They’re going to do a Ct but previously said they wouldn’t do another SpectCT. No mets in the bones would be a real win at this stage. 

 

User
Posted 18 Sep 2020 at 06:45

Hi Skye

i had 6 sessions of RT after chemo like your oh is going to have.  I was diagnosed nearly 6 years ago and at that stage it was rare to have chemo and RT when first diagnosed but trials proved that it increased longevity in many cases.

i was 49 then , now 55 and still very active , in fact I am more active now than I was then. As an example, tomorrow I am going to run non stop for 24 hours and hopefully run 100 milesin the process for PCUK. 

I have lymph involvement plus had a “mass” in my sternum from my original scan.  Chemo shrank all the tumours. I had no initial side effects from radiotherapy but a few months later had some rectal bleeding for a while that was sorted out and not in any way disabilitating or painful. The mass has never been discussed since.

its good to be optomistic because in time to come one wont look back saying that one wished one had spent more time being worried or miserable but  one may wish that they had enjoyed the time when things were going well. As my wife says, if you wake and feel ok then it’s a good day, make the most of it.

have a good day.

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 22 Aug 2020 at 23:29
Bone scans are notorious for mis interpretation and there are several guys on here who have had initial staging changed.

The important thing is to make sure you get the best treatment for whatever stage you are at.

Are they considering radio therapy with curative intent now the staging has changed? If so ask if they can include that bit of the sternum in the field as well as the prostate and lymph nodes "just in case". There is mounting evidence that small number of metastasis can be treated effectively with RT.

User
Posted 18 Sep 2020 at 08:55
Good to know that this has low side effects. I will pass this information on the my oh. Thanks.
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User
Posted 22 Aug 2020 at 22:08

Hi, I'm G9 and biopsy suggested 95% of prostate cancerous, with extra capsular extension, so locally advanced. For me no evidence of lymph or bone involvement. I think I agree the doctors are a bit blasé in what they tell us. I'm reasonably happy with my treatment, but when I ask any more precise questions such as where was the extra capsular extension, or were seminal vesicles involved I just get "it doesn't say in you notes". From research I've done it looks like about 50% of people with my diagnosis and treatment are dead with in 15 years (I'm 56 so was rather hoping for another 30 years). I do think the doctors are not keen on giving us the facts, but I expect maybe we are better in blissful ignorance thinking we are cured or curable. The only reason I know I have a reduced life expectancy is because I've researched it, maybe more fool me.

If your oh is happy that there may be no bone mets, is it not better that he is happy, rather than worry about something that can not be changed. 

Edited by member 22 Aug 2020 at 23:17  | Reason: Not specified

Dave

User
Posted 22 Aug 2020 at 22:29

Originally Posted by: Online Community Member
I do think the doctors are not keen on giving us the facts, but I expect maybe we are better in blissful ignorance thinking we are cured or curable.

It probably varies considerably depending on the doctor in question and possibly on their assessment of the patient and situation.

In this case the words used are "suggestive" and "inconclusive" which are actually fully consistent with each other.

One has said "maybe" the other has said "maybe not". They can't give a black and white answer because the results are an unclear grey. Hopefully the next CT scan will be more conclusive.

Did they say why they wouldn't do another SPECT?

 

_____

Two cannibals named Ectomy and Prost, all alone on a Desert island.

Prost was the strongest, so Prost ate Ectomy.

User
Posted 22 Aug 2020 at 23:29
Bone scans are notorious for mis interpretation and there are several guys on here who have had initial staging changed.

The important thing is to make sure you get the best treatment for whatever stage you are at.

Are they considering radio therapy with curative intent now the staging has changed? If so ask if they can include that bit of the sternum in the field as well as the prostate and lymph nodes "just in case". There is mounting evidence that small number of metastasis can be treated effectively with RT.

User
Posted 23 Aug 2020 at 00:23
They’re not offering radiotherapy. Unfortunately we have been told that his pc is incurable. They started with ht and then chemotherapy. He has 6 sessions at 3 week intervals. I believe they said they wouldn’t do another SpectCT because it’s riskier the more you have.
User
Posted 23 Aug 2020 at 01:17
There are situations where the consultants are just not sure or come to different conclusions. I was told by UCLH that from a Choline PET scan they gave me that I had cancer in an iliac lymph node. I had this scan checked by The Royal Marsden and my RT treading Hospital in Germany. Neither of them believed that the uptake of Choline and the size and shape of the suspect node indicated it was cancerous. It was suggested that I had a PSMA scan, (which I had to pay for as UCLH would not do it on the NHS). The node was not affected by cancer but a very small tumour was seen in my Prostate which was also seen in a subsequent MRI scan.

Your husband is being treated systemically and perhaps any RT will be saved to alleviate pain in some painful areas of bone as these may develop. Sometimes scans do not show the extents of mets, especially where the cancer cells are not concentrated.

Barry
User
Posted 23 Aug 2020 at 10:16
Concerning that the lymph node involvement could be questioned also. His letter says he has involvement in quite a few but maybe we should query this? He’s also never been given the staging TNM which I think he probably should have by now but perhaps that’s because they’re not sure?
User
Posted 23 Aug 2020 at 22:07
Trust your doctors more than people on here or elsewhere on the internet; as well meaning as people are, they don't have the benefit of seeing your OH's medical records.

I don't think there is any questioning the lymph node involvement in your case - the examples given by members above are not comparable. There are two types of "lymph node involvement"

- the first is where one or two nodes close to the prostate have picked up some cancer cells; these do not always rule out curative treatment as they can be removed during prostatectomy or zapped during radical radiotherapy, for example

- the second is metastatic spread in the lymphatic system, indicated by cancer in a number of nodes around the body; this is incurable but often responds well to chemo and hormone treatment. Your OH falls into this group.

On that basis, it doesn't really matter whether the grey area on his sternum is benign or cancerous; it makes no difference to his treatment, outlook, longevity ... in many ways, a bone met causes far less problems than multiple lymph node mets. So if you can, put the worry about his sternum in a box - it is probably irrelevant.

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

User
Posted 23 Aug 2020 at 22:09

PS the TNM staging should be written on his diagnosis letter from the specialist to the GP and therefore easily accessible to you. The bit of information that you are missing is the T - whether it was contained in the prostate or had escaped - so you are looking at a G10 (5+5) T? N1 M1 or possibly G10(5+5) T? N1 Mx  because of the question mark over his sternum. GP or allocated nurse should be able to tell you the ? if it isn't on any of the paperwork. 

Edited by member 23 Aug 2020 at 22:20  | Reason: Not specified

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

User
Posted 23 Aug 2020 at 22:44
Thank you so much Lyn. Clearly explained and very helpful. I’m hoping to be on the next call with him so will ask some more questions.
User
Posted 24 Aug 2020 at 02:13
I was not suggesting the situation here was comparable with mine but only gave it as an example of how you can get different opinions from various consultants. Furthermore, what I said in the second paragraph of my post of 23rd August also stands.
Barry
User
Posted 24 Aug 2020 at 12:02
What you posted was very clear Barry, my worry was that based on Skye's reply she had possibly misread or misunderstood it.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 17 Sep 2020 at 20:09
Oh had a call from the oncologist this week who said that they have reviewed his case and will offer 6 sessions of ‘low-dose’ radiotherapy to his prostate and pelvis within two months of him finishing chemotherapy.

Does anyone have experience of this level of radiotherapy. We didn’t go into detail about it with the oncologist as it’s a few weeks off. Obvious fear is side effects and chances of long term incontinence.

User
Posted 17 Sep 2020 at 23:39

Those kinds of side effects relate to men who have the full radiotherapy course of 20 x 3Gy or 37 x 2Gy - your OH is unlikely to have many side effects from a 6 session course, apart from possibly some skin soreness if he is very pale skinned.

Edited by member 17 Sep 2020 at 23:40  | Reason: Not specified

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

User
Posted 18 Sep 2020 at 06:45

Hi Skye

i had 6 sessions of RT after chemo like your oh is going to have.  I was diagnosed nearly 6 years ago and at that stage it was rare to have chemo and RT when first diagnosed but trials proved that it increased longevity in many cases.

i was 49 then , now 55 and still very active , in fact I am more active now than I was then. As an example, tomorrow I am going to run non stop for 24 hours and hopefully run 100 milesin the process for PCUK. 

I have lymph involvement plus had a “mass” in my sternum from my original scan.  Chemo shrank all the tumours. I had no initial side effects from radiotherapy but a few months later had some rectal bleeding for a while that was sorted out and not in any way disabilitating or painful. The mass has never been discussed since.

its good to be optomistic because in time to come one wont look back saying that one wished one had spent more time being worried or miserable but  one may wish that they had enjoyed the time when things were going well. As my wife says, if you wake and feel ok then it’s a good day, make the most of it.

have a good day.

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 Sep 2020 at 08:55
Good to know that this has low side effects. I will pass this information on the my oh. Thanks.
 
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