I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

T1c or T2c?

Email this conversation Print this conversation
User
Posted 09 Jul 2015 at 15:16

My husband has just been diagnosed with prostate cancer.  The letter we received was....
T1c
Gleason 3+3/3+4 PSA 10
13 cores were taken and there was cancer in 12 of those cores.  5 of which were 3+4
Maximum tumour length 7mm

DRE was confirmed as 'Hard and suspicious' at first urology appointment.

PSA 10

We have spoken to the surgeon who wants to do a radical prostatectomy with no clear nerve endings, due to cancer in both nodes and he is not sure if it isn't  through the first level.  Although MRI and CT scan were clear, MRI showed abnormalities around the prostate area.

I queried the T1c with the Urology clinical nurse who said it doesn't make sense as the report shows the prostate could be felt as hard and suspicious, and usually that is a T2c and due to the amount of cancer could be T3! and to point it out at our meeting with the oncologist.
Now we were assuming we were going to see the oncologist to have rads after surgery.  But she told me we are going to meet him, then we need to decide as to whether we have radical prostatectomy or rads! as it will be our decision!  she said if we went for surgery and it spreads, we would ask 'why didn't we have radiotherapy'  and vice versus with regards to having rads without surgery!  She said we should choose and then not beat ourselves up if it goes wrong! which threw me!  We hopefully will be meeting the oncologist next week or the following week (holidays)

I know l understood what she was telling me, because l made her repeat it! but is this right?  l know with breast cancer your surgeon and oncologist makes the decision, so just thrown by having to make our own!





User
Posted 09 Jul 2015 at 16:37
Dear Sandra

I am sorry that you find yourself here, but welcome to the forum, where you will get lots of first rate advice.

You have understood correctly, that sometimes, with PCa you do have to choose the best treatment route for you. It is very difficult to accept and understand this as you are still in shock at the moment and we have all been there.

You need to gather some more information together, and a good place to start is the tool kit on this site. You can down load it or have it posted to you.

Before you make a decision you need an exact diagnosis and to speak to a urologist and an oncologist. The first specializes in removal of the prostate and the second specializes in radiotherapy. Most men have to choose one or the other treatment, some have both, it depends.. Both have similar long term outcomes, but different side effects along the way.

There is a lot to consider and I don't want to bombard you with information.

A good nurse should be able to explain it all, the helpline on this site is very good if you need clarification.

All the best

Alison

User
Posted 09 Jul 2015 at 17:52

Others are better qualified than me to comment but if you have surgery you can have radiotherapy later if there is any recurrence but if you have radiotherapy surgery is not then possible. Of course there are different surgical options too so you have some thinking to do. The good news is it sounds as if they have caught it in time and the prospects are good. You need to take advice from others about the options in more detail as my prognosis was less good and thus have not had this choice to make. Good luck on your journey.

User
Posted 09 Jul 2015 at 18:24

Hi Sandra,

As PCa was found in 12 of 13 cores, and presumably, cores were taken from the right and left lobe of the prostate (you mention PCa in both "nodes" - lobes?), the staging points to T2c. The "abnormalites in the prostate area" picked up by the MRI scan could point to T3a/b or be artifactual (my MRI said pretty much the same thing).

In terms of treatment route, it does come as a bit of a shock when you're told "it's up to you". However there are lots of things to consider as you'll read the toolkit.  If you go the surgical route, this can be followed up with radiation treatment if required, either very soon after or further down the line. If you choose radiation over surgery, then normally surgery isn't offered as a follow up treatment, but other treatments are - again, all in the "handbook". Just be aware of something, your urologist might lean towards surgery. So best see a radiation oncologist as well to get the full picture.

flexi

 

 

 

 

 

Edited by member 09 Jul 2015 at 18:26  | Reason: Not specified

User
Posted 09 Jul 2015 at 19:59
Hi Sandra

Sorry I did not mean to confuse matters. I just meant that it would be helpful to know the exact spread before making a decision

On treatment options, although in hindsight if it is T1 or T2 I think that means it is contained either way. T3 might suggest some escape and limit treatment options possibly.

Others have said, and they are correct, that if it is contained you are in a good place to have curative treatment, which should give you hope and positivity that it has been caught early.

I am sorry to hear that you have had Breast cancer to fight too so that is an ongoing worry for you both.

It's not fair, but I hope you can find some help from new friends here.

Alison

User
Posted 09 Jul 2015 at 22:56

Reading the toolkit will be your important next step but when it comes to making a decision about treatment, I think the most important thing is to choose the treatment that will give the best chance of remission and that is perhaps a question to ask both specialists "if we choose this route, do you think he will then need salvage or adjuvant treatment?"

Statistically, men who get a cure first time do far better long-term than men who need a second treatment, which makes the 'second bite of the apple' method of choosing a bit misleading.

Going through surgery and coping with the side effects only to discover he still needs RT / HT can be devastating. Having RT / HT and then regretting this if it fails could be devastating. Choosing surgery knowing that it is going to be surgery / RT / HT combo is perfectly manageable if he knows that is what he is getting into. He presumably is not going to be offered brachytherapy (prostate is far too large for a start) and active surveillance is not an option if it is nearly breaking out.

If it were my OH, I would want to find out whether open surgery might get a better result than Da Vinci but others take a different view. Never easy to make the decision but you will find your way through it together

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

User
Posted 10 Jul 2015 at 09:33

Hello Sandra from another Sandra and welcome to this site.

I can't add much really just wanted to say this site is very supportive of both men with pc and their wives/partners so ask away.

I couldn't see in any of the posts (though I may have missed it as pretty tired) but nowhere have I seen it mentioned that your husband has had an MRI or biopsy Did he.

I was under the impression that scans/biopsy were what TC scores were based on and that was after a multi
discipline team for your husband had looked at them and then graded him. I know that the grading can change after the cancer is removed and been looked at under the micro scope

Anyway, I am sure you will benefit from looking at the Toolkit.

Don't forget to write down any questions you may want to ask the consultant and take a pen to write down the answers.

It can be very confusing during that meeting as there is so much to take in, especially when you are being asked to make major decisions.
All the very best to both of you
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 10 Jul 2015 at 11:47

Well, the reason I didn't see (all) of your first post is because I was still half asleep so apologies for that!
It will teach me to be more awake before I get on the computer!!

As far as T1c etc, my husband's original grading was T3a with seminal vessels invaded, then we were told it was T2 and no invasion, although pressing on the prostate wall. It was still contained so he had a year on Active Surveillance which gave us time to get our heads around the treatment options.

In June last year he underwent a one off seed Brachytherapy implant (which again he was told by the surgeon he was no longer eligible for having left it a year). That was apparently nonsense since the Royal London Consultant was more than happy to do it and said he was definitely eligible for it.

Left hand - Right hand - jealously guarding their own field of speciality.?? Who knows, but at the end of the line there we are trying to make informed decisions on information gleaned.

Good luck anyway to both of you

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 10 Jul 2015 at 19:48
Sandra

I had DaVinci 14 months ago, 4 Days after catheter removal I was 99 percent dry, wore pads for a few weeks as insurance against accidents. Four weeks post op back at work. Had a few problems along the way with a stricture, had a couple of small ops to help correct the problem. PSA at 12 months still undetectable. I was supposedly non nerve sparring but something is still connected and with help ED is getting better.

All the best with your choice.

Thanks Chris

User
Posted 10 Jul 2015 at 22:23

Hi Sandra,

I was given a stage grading of T2A after biopsy but this was upgraded to T3A after MRI. The most accurate way of determining Gleason score is when it is sliced up in the lab which of course means only after a surgical removal. Robotic surgery has one definite advantage over open surgery in that recovery time is less and as is possible need for blood to be transfused due to loss during the operation. However, some surgeons still prefer non Robotic as they prefer more hands on. It also means that surgeons using the Robot have to have further training and become proficient using it which some might not do for several reasons, not least being that their Hospital may not have a Robotic machine. Then some surgeons use Laparoscopic surgery. However, more important than the type of surgery is the skill and experience of the surgeon in the procedure.

There are also different ways of administering RT such as External Beam delivered by various machines, two forms of Brachytherapy with or without the addition of External Beam for those that are suitable. In reality a patient is likely only to be offered what his Hospital can provide so this may restrict the type of surgery or RT he is offered.

Barry
User
Posted 11 Jul 2015 at 01:14

I have never heard of an age cut off for surgery and the Equality Act probably makes it illegal anyway. What is more important than age is that the person is fit enough for what can be 5 - 6 hours of general anaesthetic and the long haul of healing. Men with heart problems are likely to be excluded from keyhole surgery as they have to tip the patient head down during the op which puts too much pressure on a weak heart. Also people that have neck problems or had previous abdominal surgery may find it hard to get a surgeon to agree to operate.

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

User
Posted 11 Jul 2015 at 14:47

Originally Posted by: Online Community Member

Sounds like you have done really well Chris,  really good to hear!  I have no idea if age has any bearing on recovery!  my husband is 71! which reminds me, someone told me there was a cut off age for prostate removal! is that correct? they said 72!   he is obviously within that anyway, but wondered if the age cut off was because it takes longer to recover!

Thank you
Sandra

 

My husband was 72/3 at diagnosis and was readily offered surgery and the consultant was quite gruff because he wouldn't jump for it straight off.

He is pretty fit for a now nearly 75 year old though

We can't control the winds - but we can adjust our sails
Show Most Thanked Posts
User
Posted 09 Jul 2015 at 16:37
Dear Sandra

I am sorry that you find yourself here, but welcome to the forum, where you will get lots of first rate advice.

You have understood correctly, that sometimes, with PCa you do have to choose the best treatment route for you. It is very difficult to accept and understand this as you are still in shock at the moment and we have all been there.

You need to gather some more information together, and a good place to start is the tool kit on this site. You can down load it or have it posted to you.

Before you make a decision you need an exact diagnosis and to speak to a urologist and an oncologist. The first specializes in removal of the prostate and the second specializes in radiotherapy. Most men have to choose one or the other treatment, some have both, it depends.. Both have similar long term outcomes, but different side effects along the way.

There is a lot to consider and I don't want to bombard you with information.

A good nurse should be able to explain it all, the helpline on this site is very good if you need clarification.

All the best

Alison

User
Posted 09 Jul 2015 at 16:49

Thank you Alison, l will have a look at the 'tool kit' When you say we need an exact diagnosis, have we not got that? The surgeon said he wont know any spread (outside) until someone looks at the prostate under a microscope, which is understandable. But we have the Gleason and the biopsy results, guessing the T1c or T2c doesn't really matter, as l say the prostate was found to be 'hard and suspicious' by the urologist on the first examination. oh yes and was probably 70g. This was found on his PSA at a routine blood test.
I have spoken to one of the nurses on here and she agrees it should probably say T2c and not T1c, will have to speak to the onc about that when we meet him.

I had breast cancer a few years ago, and that was very straightforward with regards to mastectomy/chemo/rads. But this making your own decision is slightly different to say the least!

Thank you
Sandra

User
Posted 09 Jul 2015 at 17:52

Others are better qualified than me to comment but if you have surgery you can have radiotherapy later if there is any recurrence but if you have radiotherapy surgery is not then possible. Of course there are different surgical options too so you have some thinking to do. The good news is it sounds as if they have caught it in time and the prospects are good. You need to take advice from others about the options in more detail as my prognosis was less good and thus have not had this choice to make. Good luck on your journey.

User
Posted 09 Jul 2015 at 18:24

Hi Sandra,

As PCa was found in 12 of 13 cores, and presumably, cores were taken from the right and left lobe of the prostate (you mention PCa in both "nodes" - lobes?), the staging points to T2c. The "abnormalites in the prostate area" picked up by the MRI scan could point to T3a/b or be artifactual (my MRI said pretty much the same thing).

In terms of treatment route, it does come as a bit of a shock when you're told "it's up to you". However there are lots of things to consider as you'll read the toolkit.  If you go the surgical route, this can be followed up with radiation treatment if required, either very soon after or further down the line. If you choose radiation over surgery, then normally surgery isn't offered as a follow up treatment, but other treatments are - again, all in the "handbook". Just be aware of something, your urologist might lean towards surgery. So best see a radiation oncologist as well to get the full picture.

flexi

 

 

 

 

 

Edited by member 09 Jul 2015 at 18:26  | Reason: Not specified

User
Posted 09 Jul 2015 at 19:37

Hi Yorkhull, Good point, never thought about not having rads again! should do, been down the breast cancer route!
The surgeon was talking about the da vinci robot! so guess that is his plan!  just wish we had one.  But yes we do have a choice and thank you for your good luck.  I hope your 'journey' has more ups than downs.

User
Posted 09 Jul 2015 at 19:48

Hi Flexi,
yes l meant lobes, not nodes! Yes biopsies was taken from both!
Need to go and look at this toolkit! 
We are waiting for an appointment to see the oncologist, hopefully 7/10 days.  I actually know the oncologist as l had breast cancer, so will be good to get some feed back from him.  He had a hard job keeping my bc at bay, but thankfully at the moment l am ok. but he was without doubt very thorough.
Yes again thanks for the surg/rads suggestion, never thought of that, should have!
Thank you

User
Posted 09 Jul 2015 at 19:59
Hi Sandra

Sorry I did not mean to confuse matters. I just meant that it would be helpful to know the exact spread before making a decision

On treatment options, although in hindsight if it is T1 or T2 I think that means it is contained either way. T3 might suggest some escape and limit treatment options possibly.

Others have said, and they are correct, that if it is contained you are in a good place to have curative treatment, which should give you hope and positivity that it has been caught early.

I am sorry to hear that you have had Breast cancer to fight too so that is an ongoing worry for you both.

It's not fair, but I hope you can find some help from new friends here.

Alison

User
Posted 09 Jul 2015 at 20:19

Doesn't take much to confuse me with pc! thought it was going to be like bc, no choice! only one route.
I guess this is as much information we are going to get with regards to any grading, his words were, "l see no sign of spread, but.... there is a lot of cancer there and it may just have started to come out,  only by  removing the prostate and putting it under the microscope can we tell"
The T1c in the letter is obviously a mistake, spoken to two prostate nurses and the doctor and all agree it should be T2c possible T3
Thank you

User
Posted 09 Jul 2015 at 22:56

Reading the toolkit will be your important next step but when it comes to making a decision about treatment, I think the most important thing is to choose the treatment that will give the best chance of remission and that is perhaps a question to ask both specialists "if we choose this route, do you think he will then need salvage or adjuvant treatment?"

Statistically, men who get a cure first time do far better long-term than men who need a second treatment, which makes the 'second bite of the apple' method of choosing a bit misleading.

Going through surgery and coping with the side effects only to discover he still needs RT / HT can be devastating. Having RT / HT and then regretting this if it fails could be devastating. Choosing surgery knowing that it is going to be surgery / RT / HT combo is perfectly manageable if he knows that is what he is getting into. He presumably is not going to be offered brachytherapy (prostate is far too large for a start) and active surveillance is not an option if it is nearly breaking out.

If it were my OH, I would want to find out whether open surgery might get a better result than Da Vinci but others take a different view. Never easy to make the decision but you will find your way through it together

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

User
Posted 10 Jul 2015 at 06:23
Thank you Lyn, slowly but surely it is starting to come together and make sense, if that is possible. Perhaps I should say, I understand a little more! Yes I have ordered the toolkit. After reading that and meeting the onc we will hopefully make the right decision. You have all been so helpful. Thank you. I was very confused when I first came on. But things are clearer now. X
User
Posted 10 Jul 2015 at 09:33

Hello Sandra from another Sandra and welcome to this site.

I can't add much really just wanted to say this site is very supportive of both men with pc and their wives/partners so ask away.

I couldn't see in any of the posts (though I may have missed it as pretty tired) but nowhere have I seen it mentioned that your husband has had an MRI or biopsy Did he.

I was under the impression that scans/biopsy were what TC scores were based on and that was after a multi
discipline team for your husband had looked at them and then graded him. I know that the grading can change after the cancer is removed and been looked at under the micro scope

Anyway, I am sure you will benefit from looking at the Toolkit.

Don't forget to write down any questions you may want to ask the consultant and take a pen to write down the answers.

It can be very confusing during that meeting as there is so much to take in, especially when you are being asked to make major decisions.
All the very best to both of you
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 10 Jul 2015 at 09:51

Hello Sandra, I wonder why you can't see my first post! Yes my husband had a MRI right at the start of this nightmare! Which was discussed at the mtd meeting, they said it showed area of abnormality.
12/13 core biopsies showed cancer, Gleason 3+3/3+4 (5 were the 3+4)
The original letter that came said T1c, I have queried this as on examination (dre) his prostate was felt as firm to hard suspicious possibly 70g+
Whatever I read tells me is can't be T1c the two different nurses I have spoke to agree it is more likely T2c, possibly T3
Thank you
Sandra

User
Posted 10 Jul 2015 at 11:47

Well, the reason I didn't see (all) of your first post is because I was still half asleep so apologies for that!
It will teach me to be more awake before I get on the computer!!

As far as T1c etc, my husband's original grading was T3a with seminal vessels invaded, then we were told it was T2 and no invasion, although pressing on the prostate wall. It was still contained so he had a year on Active Surveillance which gave us time to get our heads around the treatment options.

In June last year he underwent a one off seed Brachytherapy implant (which again he was told by the surgeon he was no longer eligible for having left it a year). That was apparently nonsense since the Royal London Consultant was more than happy to do it and said he was definitely eligible for it.

Left hand - Right hand - jealously guarding their own field of speciality.?? Who knows, but at the end of the line there we are trying to make informed decisions on information gleaned.

Good luck anyway to both of you

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 10 Jul 2015 at 19:48
Sandra

I had DaVinci 14 months ago, 4 Days after catheter removal I was 99 percent dry, wore pads for a few weeks as insurance against accidents. Four weeks post op back at work. Had a few problems along the way with a stricture, had a couple of small ops to help correct the problem. PSA at 12 months still undetectable. I was supposedly non nerve sparring but something is still connected and with help ED is getting better.

All the best with your choice.

Thanks Chris

User
Posted 10 Jul 2015 at 21:22

Sounds like you have done really well Chris,  really good to hear!  I have no idea if age has any bearing on recovery!  my husband is 71! which reminds me, someone told me there was a cut off age for prostate removal! is that correct? they said 72!   he is obviously within that anyway, but wondered if the age cut off was because it takes longer to recover!

Thank you
Sandra

User
Posted 10 Jul 2015 at 22:23

Hi Sandra,

I was given a stage grading of T2A after biopsy but this was upgraded to T3A after MRI. The most accurate way of determining Gleason score is when it is sliced up in the lab which of course means only after a surgical removal. Robotic surgery has one definite advantage over open surgery in that recovery time is less and as is possible need for blood to be transfused due to loss during the operation. However, some surgeons still prefer non Robotic as they prefer more hands on. It also means that surgeons using the Robot have to have further training and become proficient using it which some might not do for several reasons, not least being that their Hospital may not have a Robotic machine. Then some surgeons use Laparoscopic surgery. However, more important than the type of surgery is the skill and experience of the surgeon in the procedure.

There are also different ways of administering RT such as External Beam delivered by various machines, two forms of Brachytherapy with or without the addition of External Beam for those that are suitable. In reality a patient is likely only to be offered what his Hospital can provide so this may restrict the type of surgery or RT he is offered.

Barry
User
Posted 11 Jul 2015 at 01:14

I have never heard of an age cut off for surgery and the Equality Act probably makes it illegal anyway. What is more important than age is that the person is fit enough for what can be 5 - 6 hours of general anaesthetic and the long haul of healing. Men with heart problems are likely to be excluded from keyhole surgery as they have to tip the patient head down during the op which puts too much pressure on a weak heart. Also people that have neck problems or had previous abdominal surgery may find it hard to get a surgeon to agree to operate.

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

User
Posted 11 Jul 2015 at 09:00
Hello Barry, my husband had the MRI after his first meeting with the urologist, so at that time all we knew is that it was hard, firm suspicious prostate, probably 70g+ and as I say the MRI came back with suspicious areas of prostate. I am wondering what % have the grading changed from the biopsy to the result of surgery?

He is having the Da Vinci, so is this just keyhole? Just thought if it was 70g, will keyhole be suitable!

He is having it done in a London Hospital, not sure what one at the moment, seems they are in the middle of moving and they are using the theatres of a private hospital.

Lyn, I was told the age cutoff by the specialist nurse at the Royal Free, which is part of our trust in our Barnet hospital. I did query it with her, saying, surely it should be about their general health, she said yes, but there is still an age cutoff!

Which surprised me because I know there isn't for breast cancer.

Thank you both for your replies

Sandra

User
Posted 11 Jul 2015 at 14:47

Originally Posted by: Online Community Member

Sounds like you have done really well Chris,  really good to hear!  I have no idea if age has any bearing on recovery!  my husband is 71! which reminds me, someone told me there was a cut off age for prostate removal! is that correct? they said 72!   he is obviously within that anyway, but wondered if the age cut off was because it takes longer to recover!

Thank you
Sandra

 

My husband was 72/3 at diagnosis and was readily offered surgery and the consultant was quite gruff because he wouldn't jump for it straight off.

He is pretty fit for a now nearly 75 year old though

We can't control the winds - but we can adjust our sails
 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK