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Option #2 visit - the Radiation Oncologist

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

We felt like people shopping for treatment today. The radiation oncologist made radiation sound like a walk in the park, NO side effects per him (incontinence or impotence, which I find hard to believe), and the best thing since sliced bread. I asked him point blank what he would do if he had this stage and was this age, of course, his immediate answer was 'radiation'. He claims to see virtually no side effects with either radiation or seeds. It wasn't till I brought up possible migration of seed that he said, oh yeah, we have the patients strain their urine for awhile. He also said he had one incidence of a guy with radiation tx that had a rectal fistula of about 600 patients. Had done about 350 seed implants. That requires anesthesia for prostate mapping, then also for the seeding itself, and it seemed like there was one more instance of needing anesthesia. I don't have my notes right here with me.
At the end of the conversation I asked him if he kept statistics on all his patients and any degrees of incontinence or ED and he said, well, yes, 'loosely'. AHA! Why is it with this disease, you don't get any percentages or hard facts? He cautioned that surgery carried a MUCH higher risk of ED or incontinence, which is not what I've read. I've also read that if you need surgery later it is more difficult. Not so, he said. He also said that you wouldn't have surgery anyway if there were a recurrence, the next step would be hormone therapy.
We walked out after the appointment and Jesse looked at me and said NO WAY NO HOW am I letting anyone put radiation into me! So I guess that is that. I just found the information presented much more positive that what I've been reading in books. I have also heard that if there is a problem prior to surgery with the urine stream, it is likely to be made worse with radiation. He did mention a risk of not being able to pee and having to do caths after the seed implants. AHA again!
I have a book written by a urologist who at first chose radiation, but during the mapping when a catheter was put in the staff had a hard time passing the cath, meaning he had some degree of BPH and obstruction. He then surmised that rad tx was likely not the best for him, and with Jesse having some stream issues for a few years, I think that would be more likely for him, too.
Anyway, at least we explored it. He also told us Jesse's stage is a T1c and the cancer was on the right side.
On we go to next opinion (director of urology at IU) on 3/16. We are going to a DaVinci support group meeting at 6 tonight. I get to go in a room with the ladies, Jesse with the men so we will compare notes after. Until then!

hopeful and opt...
Posts: 1317
Joined: Apr 2009

As I had mentioned to you, al the doctors will tell you what they do is the best, and they all want you..........with the low number that you have

"He also told us Jesse's stage is a T1c and the cancer was on the right side."

I wonder, how did he determine this?

Ira

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

Actually, his urologist doesn't do HIFU and does open surgery, and he recommended HIFU. That surprised us and got us initially interested in HIFU until we found out more about it. I'd really be interested in hubby waiting a bit to decide, but he is unwilling, wants it gone for his own piece of mind. I'm a nurse, so I see things differently sometimes, but it is HIS body and I'm just here for support and to provide him with information to make a good decision.

Here is what I found about staging, I think the fact that Jesse's cancer is non-palpable on DRE, ultrasound imaging did not detect it, and he was assuming that Jesse's bone scan and CT are normal. Also, the biopsy that had the cancer was from the right side. Also below where I've copied and pasted, at T1c is when the cancer is detected via needle biopsy and because of elevated PSA. See all below:

There are two schemes commonly used to stage prostate cancer. The most common is promulgated by the American Joint Committee on Cancer, and is known as the TNM system, which evaluates the size of the tumor, the extent of involved lymph nodes, and any metastasis (distant spread) and also takes into account cancer grade. As with many other cancers, these are often grouped into four stages (I–IV). Another scheme, now used less commonly for research, but often still used by clinicians, is the Whitmore-Jewett stage.

Briefly, Stage I disease is cancer that is found incidentally in a small part of the sample when prostate tissue was removed for other reasons, such as benign prostatic hypertrophy, and the cells closely resemble normal cells and the gland feels normal to the examining finger. In Stage II more of the prostate is involved and a lump can be felt within the gland. In Stage III, the tumor has spread through the prostatic capsule and the lump can be felt on the surface of the gland. In Stage IV disease, the tumor has invaded nearby structures, or has spread to lymph nodes or other organs. Grading is based on cellular content and tissue architecture from biopsies (Gleason) which provides an estimate of the destructive potential and ultimate prognosis of the disease
ALSO:

Evaluation of the (primary) tumor ('T')
TX: cannot evaluate the primary tumor
T0: no evidence of tumor
T1: tumor present, but not detectable clinically or with imaging
T1a: tumor was incidentally found in less than 5% of prostate tissue resected (for other reasons)
T1b: tumor was incidentally found in greater than 5% of prostate tissue resected
T1c: tumor was found in a needle biopsy performed due to an elevated serum PSA
T2: the tumor can be felt (palpated) on examination, but has not spread outside the prostate
T2a: the tumor is in half or less than half of one of the prostate gland's two lobes
T2b: the tumor is in more than half of one lobe, but not both
T2c: the tumor is in both lobes
T3: the tumor has spread through the prostatic capsule (if it is only part-way through, it is still T2)
T3a: the tumor has spread through the capsule on one or both sides
T3b: the tumor has invaded one or both seminal vesicles
T4: the tumor has invaded other nearby structures
It should be stressed that the designation "T2c" implies a tumor which is palpable in both lobes of the prostate. Tumors which are found to be bilateral on biopsy only but which are not palpable bilaterally should not be staged as T2c

hopeful and opt...
Posts: 1317
Joined: Apr 2009

I suggest that you research this test; it will stage your disease and determine if there is nodule involvement, and if so where.......When I wss treated at UCLA this was the only test aside from the biopsy that I had done , that my doc was interested in.

This test that will really indicate where you stand is an MRI done along with a Spectroscopy.MRSI......it will stage your disease, and show any nodule involvement if any. Only some major cancer hospitals have the equipment and expertise to administer the test.

I had been elsewhere where the doc wanted to do a bonescan and another test that I did not do, because of the research that I did; and my lady friend who is an advanced practice nurse advised me to wait until I go to UCLA, and see what the expert's expert has to say. I had read at different sources that a bone scan is not recommended or necessary for those with gleasons less than 8.

Ira

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Funny, my oncologist 2nd Opinion from Dr. Dugan Trained at one of the foremost radiation departments at General Mass did not try to sell me on radiation..and quit emphatically indicated he would have the prostate removed...and that once you do radiation surgery is much more difficult if not impossible. So strange that one doc from another in the same field would be opposed in direction and advice. The oncologist said if it was me he'd remove it and come back for radiation with any positive margins or reoccurance.

This is certainly a sticky and trying disease to deal with!

Really interested in your support group experience...I should have seeked out one here...but didn't.

Randy

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

I was fully expecting the good experience you had with the rad doc you saw. When he told me that they kept statistics 'loosely' I wanted to laugh! We felt like we were at a used car dealership the way he was making the hard sell. I did not like his approach at all, everything he said was so contrary to everything I've learned in the past 2 weeks. Jesse wanted to run out of there!

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

Jesse's original urologist did not want to order the bone scan or the ct of the abdomen. The second opinion one did order both. The reason being that Jesse has osteoarthritis, and he wanted to get a baseline bone scan. OA will show up as a hot spot on bone scan. He wanted a baseline bone scan so if the disease advances later, you have a reference point.

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

There is not an MRI with coil available in our city. But we are going to Indianapolis soon (3/16) and will try to get the guy there to order it. Unfortunately, if insurance doesn't pay for it (and its likely it won't, we have the dreaded CIGNA), we will be having a difficult time because I had two surgeries myself this year and we owe lots of $$ there (high deductible and out of pocket)... and hubby loses his job in May. Fun year so far! NOT

hopeful and opt...
Posts: 1317
Joined: Apr 2009

however the spectroscopy is not, it is considered investigational ......I paid 900 extra for this.......i guess that different institutions have different prices

you can also look into a clinical study to get it for free

Ira

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

There is not an MRI with coil available in our city. But we are going to Indianapolis soon (3/16) and will try to get the guy there to order it. Unfortunately, if insurance doesn't pay for it (and its likely it won't, we have the dreaded CIGNA), we will be having a difficult time because I had two surgeries myself this year and we owe lots of $$ there (high deductible and out of pocket)... and hubby loses his job in May. Fun year so far! NOT

Trew
Posts: 892
Joined: Jan 2010

Your stages just cannot be correct. Both my urologist in Lansing and Loma Linda Med Center have me as a T4. I am sure there is a stage 5. I just know there are other stages above me. At least 1 more anyway.

Editing......

What do I know? I just copied this from a site describing PC stages T4a: Tumor invades bladder neck and/or external sphincter and/or rectum. Mine went into the bladder neck, maybe the edge of the bladder.

There has to be other sites......

And certainly the rad backed it down a lev or two? And the surgery? And the eligard! I just hate that stuff!

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I think Maria is right...as when you pull it up on Wikapedia...its only 4

http://en.wikipedia.org/wiki/Prostate_cancer_staging

WebMD also reports only 4 stages:

http://www.webmd.com/prostate-cancer/guide/prostate-cancer-stages

Trew, as I was poking around on this topic I found some trial information and one that was about using a drug to reduce the Hot Flashes from your drug theraphy...have you seen this? Hope you havn't and it can help perhaps.

http://www.cancer.gov/clinicaltrials/results/prostate

Trew
Posts: 892
Joined: Jan 2010

Randy, I am off to take a look at your recommendation......

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

http://www.cancer.gov/clinicaltrials/results/gabapentin-men0607

Trew
Posts: 892
Joined: Jan 2010

I was closer to the edge than I thought. Somehow I had convienced myself that there was another stage to prostate cancer and I was below it that a T4 was still pretty safe.

Some kind of mind trick I was playing on myself, I guess.

Surprise surprise. But then, no surprise.

Some of you seem to have such positive attitudes about all this, but I just cannot get that upbeat view of all this. I have backpacked thousands of rugged miles in remote places like along the CDT in high elevations in colo and been near grizzlies in Mont. I have been across some interesting snow slopes, river crossings, lightning storms in high elevations, I always have a very positive outlook about how things would turn out- even did a lot of solo trips. But I just can't seem to get on top of this Pc thingie. It has been like that from the very start with my 1st PSA of less then 10. I had a sense every turn was going to be the wrong one for me. There is nothing to indicate I have any immediate problem, my PSA lev is holding at .01. So what is the matter with me?

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

Trew

I have been reading your posts and I am wondering why you are concerned
when your psa is .01 ? Maybe you are thinking about it too much?
Try not to imagine future trouble...havent you done all you can do?
???

142
Posts: 169
Joined: Dec 2009

I visited the urologist - after ugly biopsy results & the like, he sent me to a Rad. Oncologist for a second opinion. She was all upbeat & positive, I would do great. I asked for the success rate for my numbers - she answered 70%, and we could use hormone therapy after that (for the rest of my life!). I was in immediate shock. 70%. That means she fails 30% of the time, at $45,000 a crack. I would be unemployed if I failed 30% of the time.
Not for me. We cut the little bugger out.
My post-op numbers are bad enough that I'll be back for radiation as a backup, but I know more than I ever could have without the surgery, because there was a proper pathology report.

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

Good for you for following your heart. Yes, all of us would be fired if we only did our job properly 70% of the time! I don't get these people who give you (or don't give you) numbers and expect you to be convinced!
I was reading a book called The Big Scare (about prostate cancer) and all the statistics in the world being preached at you don't make a lick of difference if you turn out to be THE ONE that has the complications or the failure!!
We are looking at surgery, definitely, to do as you said, CUT THE LITTLE BUGGER OUT!
My hubbie felt much better after the support group meeting tonight.

142
Posts: 169
Joined: Dec 2009

You will understand of course that those of us who have always been the rocks and foundations for everyone else can't really confide in anyone. That makes the support groups one of our few outlets - everyone is more or less up the creek together. Glad he found one.

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

I think that having support of others who know what it is to go through a particular illness is so important. No one can understand prostate cancer better than another man going thru it. Even so, each experience is different.
As his wife, I can be supportive, caring, and his rock, but I don't have a prostate and I am not a man, therefore, it is best he has the option of discussing this with others in the same situation. Have you gone to a support group 142? Just wondering if others found them helpful too...I know that they are not for everybody. Being able to talk to other women helped me a lot too, and I really didn't feel the need to go tonight, was just going to encourage him. I was blessed, too.

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

In my line of work we are allowed less than 1 percent error~~~

government believe it or not, but the "peon's) in government.

lewvino's picture
lewvino
Posts: 1006
Joined: May 2009

Keep asking those questions! That is how you will enventually know what is right for you and your husband for treatment. I visited a seed impact Doc...when we got down to it with my gleason he only gave me a 60% chance of being cancer free in 10 years following his treatment.
For me surgery gave me a better chance.

Larry

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

Larry , that is interesting...

Yes I have already learned so much here...after only 1 day....I am going
to ask the hard questions of every doctor that we visit...the main one being:

"IN MY SITUATION AND WITH MY SCORES, WHAT ARE MY CHANCES OF BEING CANCER FREE IN 5 YEARS AND IN 10 YEARS, IF I CHOSE YOUR TREATMENT?????

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