Diagnosis? no path report yet

[veryworriedmom]

Today the staples came out, no path report yet,doctor called and got an oral report said seminoma stage 1. said the path report was sent out and it will be another day or two. said CT scan next and recommended seeing a radiation oncologist.
I have been reading that some with the same diagnosis choose surveillance and some radiation. What sways people in each direction? Does age have anything to do with it? Its a few weeks off work from what I read and side effects. Can anyone tell me when they received this diagnosis what factors did they use to make the decision. Should there be a second opinion from another radiation oncologist? Do people get second opinions on Path reports? We are still in the initial shock stages, only one week since diagnosis and surgery on 8/29/07. I appreciate all the feedback and support. VWM

[Already Bald]

Do people get second opinions on Path reports?

VWM,
People often get second opinions on Path reports, in fact I had my slides read three times.
The second and third read were at PENN and Sloan-Kettering, both centers of excellence.

I recommend that you see one of these experts:

http://tcrc.acor.org/experts.html

As far as making decisions on treatments, that is and always be a tough one.
Me?, I think that you should do whatever you can to avoid the possibility of future chemo.
But based on that oral path report, you son is likely already cured
Why not go see an expert, and learn as much as you can about your options?
Remember, having to make decisions is a good thing- it means that the doctors are not sure if he is cured. If they were unsure, you would be going straight to RT or chemo!
Hope this helps,
Joe

[dadmo]

VWM
I would certainly get a second opinion a diagnosis of seminoma in a 23 year old is unusual, not bad, just unusual. The more common form of testicular cancer for that age group would be non-seminoma. The reason for a second opinion is that they are treated differently. Non-seminoma gets chemo and seminoma gets radiation and you don't want the treatment to be wrong. I don't know where you live but my wife and I are 35min fromn Sloan Kettering in NY. If you should decide to visit them you can stay with us, we have plenty of room.

[Fed]

Hi VWM,

First off, just to put my mind at ease, I would get a hard copy of the pathology report. A diagnosis of seminoma is quite promising. Like dadmo said, it doesn't happen very often in younger guys, but it does occur: a couple of our more active members, fuse929 and Matt24, are 23 and 24, respectively, and both also had seminoma stage I. Fuse929 went the surveillance route, while Matt24 did RT.

I myself was diagnosed with stage I seminoma, and I originally wanted to get adjuvant radiation to enhance my 5-year cure rate from 80% to >98%; however, multiple docs (5 of them, in fact) said that, in my case, radiation would probably be overkill because a) there was no lymphovascular invasion, b) there was no rete testis invasion, and c) the viable tumor was tiny (< 1 cm). Also, radiation increases the long term risk (10-20 years) of a secondary malignancy. My surveillance schedule involves abdominal/pelvic CT scans, chest X-rays and tumor markers every 4 months for the next 3 years. Apart from the anxiety leading on the days before labs (less intense as time goes by), it's worked out well for me.

Bottom line, I think you should get a copy of the path report, because you need to know more details before making a treatment call. If you are interested in getting a second opinion on the path read, I would strongly suggest Victor Reuter at Sloan-Kettering. He is the pathologist Joel Sheinfeld (one of the gurus of TC treatment) uses, and he is top notch and very personable -he did my second opinion. In some cases, your insurance will cover a second opinion, and if not, it usually goes for $200-300 (in my opinion a small price to pay for the certainty of a diagnosis and a sure fire guide to adequate treatment).

Feel free to post any other questions you may have. How's your son's recovery going?

[Karen]

vwm,
Joe, Bill and Fed gave you very sound advice. My husband, at age 46, was diagnosed with stage 1 seminoma which, at his age made sense. We still sent the labs, scans and slides to Sloan for confirmation. Our insurance didn't cover it, but peace of mind is worth it. Confirm the pathology, and I don't believe a second opinion from a radiologist will be any different.

Ray chose RT for seminoma and for him that was the right choice. The increased chance of recurrance and the stress of frequent follow ups was not what he wanted to deal with. RT or surveillance are both options and it really comes down to a personal choice. The size of the tumor and invasion may guide you as well on this.

I know your head is spinning, but moving fast from a suspicious lump to surgery is a VERY good thing.

[Fish]

Hi VWM:

I chose survellence for basically the same reason Fed did. My chances of recurrence were low, as there was no lymphovascular or rete invasion, small tumor - 0.7cm. Plus at age 42, this was a positive factor also. I figured if I'd save the radiation in case of recurrence, since seminoma follows a predictable spreading pathway, it's pretty easy to detect early.

I agree with Dadmo, because pure semimona is less common in younger men, having the slides read by an expert would be a good idea.

best wishes.

[fuse929]

I am 23, and I chose surveillance due to the fact that I was diagnosed stage 1a seminoma, had no initial markers, had a clean CT scan 2 weeks post op, and live only 2 blocks from the hospital (making it easy to keep up with my surveillance protocol). My urologist told me he would have done the same if he was in my shoes. I get anxious around the time of my surveillance check-ups, but I can handle it. I hope this helps.

Also, I did not get a second opinion done. I would have liked to have, but my insurance didn't cover it and honestly I just wanted that part of the procedure to be behind me......I think in a way I didn't want the promising news crushed by a different, more dangerous pathology. In retrospect, I should have gotten a second diagnosis, though it hasn't come back to bite me yet.
Bobby

[veryworriedmom]

Path Report Confirmed

Thankyou everyone for your advice. The report reads: Seminoma, tumor size 4x2.6x2.4 cm .spermatic cord negative. Stage pT1 NxMx. All of the seminoma confined within the testicle. The urologist had us set up a CT scan for tomorrow if the insurance authorizes. They are a pain and would not rush the request. After the CT scan he suggested we follow up with a radiation oncologist. Now Im concerned if this is an unusual diagnosis for a younger guy. Fed mentioned the second opinion. How do I go about it? do I request the info sent to sloan or do they do the paperwork once I authorize it. I have heard of Dr. Sheinfeld and Im all for the second opinion I just dont know who to start with and if the pathologist has to send the slides out?
The surgical recovery is going Ok just a little sore but yesterday after the docs visit he was very depressed, realized how this is a life changeing event.
To DadMo thanks for the offer. We are in Maryland and I havent thought that far ahead about where to stay. I guess if its a one day consult then we go back the same day. I really appreciate all the help . VWM

[Karen]

VWM,
Call Sheinfeld's office and they will tell you what to send and how. In our case, we FAXed all the labs and reports, the hospital that Ray had the surgery done at sent the slides and we brought the films with us. Sloan will guide you. I strongly encourage a second opinion on the path...even a small % of non-seminoma and the tumor will be treated as a non-seminoma. You may want to meet with Sheinfeld and his team and discuss the options. The tumor is relatively large. The CT and chest X-ray will determie the staging.

Your son may want to post here as well. The emotional toll as this sets in is tough. Yes, life has changed. Life is always changing. He WILL be fine, and we WILL be here for you and your family. Early stage seminoma has a very high cure rate.

I also suggest that you keep copies of all reports, labs and a CD of the scans as well in case your son moves out of the area or changes centers.

Hugs form one mom to another,
Karen

[Fed]

Thanks for the update. For the complete picture, you will need the results of the abdominal/pelvic CT scan to see if there is node involvement. This is also critical in determining the treatment options. Due to the size of the tumor, it is very unlikely that surveillance will be an option. If there is lymph node involvement as noted by the CT, possible options include radiation or chemo. I won't get into these until you find out the results from the CT. Did they specify how far the tumor stretched out? I'm looking for something more specific than "confined within the testicle" (i.e. tunica albuginea, tunica vaginalis, rete testis, etc.).

In order to get a second read on the pathology, here's what I did:

1. Called my insurance to make sure that pathology second opinions were covered. If so, does the new pathologist (Victor Reuter at Memorial Sloan-Kettering Cancer Center) I would be using take that insurance?
2. Called Victor Reuter's office (212-639-8225) to speak with his admin and get instructions on having the second read done. If I remember correctly, I had to retrieve the slides themselves and ship them to Sloan by FedEx along with a copy of the original pathology report, a copy of my insurance card and a cover letter to Dr. Reuter detailing what I wanted examined and what questions I had. I also sent a CD with my diagnostic ultrasound and the corresponding report.
3. Once the slides are received at Sloan, it would take a few days to get the second read. Dr. Reuter himself called me to give me his assessment, and he followed it up with a written write-up. After this happens, make sure they send the slides back to you.

You need not be concerned about this being an unusual diagnosis for a young guy. It is uncommon for a young guy to present with pure seminoma, but it does happen, so you shouldn't think this is too out of the ordinary and in no means should this stress you out.

If you want to discuss this further and offline, feel free to PM me or contact me by e-mail.

[Fed]

The focus on the medical aspects of this distracted me from an important issue Karen brought up. How is your son holding up? You mentioned he seemed a bit depressed, and that is not surprising. Cancer usually tends to strike either older people or very young kids, but with something like testicular cancer, it's guys in their late teens, 20s, 30s, and sometimes 40s that usually go through this. The physical issues with cancer and its treatment are one thing, but cancer also tends to mess with the heads of the patient and, as you can probably tell by now, the caregivers. You should rest assured that with prompt and well informed treatment, your son has an excellent chance of being cured. Like Karen said, I would encourage him to come over to the site and check it out (even if he just lurks on the sidelines). Even though we are not medical experts, everyone here has been exposed to TC in some manner, shape or form, and we are all here to help each other out.

[dadmo]

VWM:
Pure seminoma doesn't change your son's potential cure, my intent was simply to make sure the diagnosis was correct before treatment began. I'm sorry if what I wrote caused you any extra stress.

As far as staying at our home we don't need any more notice then to knock on the door. We're here for you if you need us.

Bill & Nancy Moses
48 Myrtle Ave
Midland Park NJ 07432
201-445-2532

[Karen]

VWM,
You're new to this Family....but be assured that Bill's offer is genuine. We all have each others backs here and you should lean on us now...and soon you too will be helping others. Please poke around our research library for the most up to date info on seminoma and treatment. The NCCN guidelines can be found here: http://www.tc-cancer.com/forum/showthread.php?t=4589 ,

I agree with Fed that with the size of the tumor, even if the CT is negative, the chance of micrometastesis is such that surveillance may not be the best choice. My husband did have RT, scheduled it at the end of the day, and did not miss a minute of work. A host of medications can control nausea. We can give tips when you are set on the treatment.

[Fish]

Hi VWM:

I see you're in Maryland. I live in Columbia, MD, if there is anything I can do to help out on this end - if you or your son want to get together and talk, we can set something up, please let me know. I'll send you my cell phone # in a PM.

Stay positive, as the others have said, your son has an excellent chance for a cure.

Best wishes,
Jim

[veryworriedmom]

Thanks for the help on second opinions

To dadmo ,you did not cause me any extra stress, please don't think that. In fact you did me a favor because I realize we can never be too complacent about this and must cover all our bases to make sure treatment is correct. I just didn't think of a second opinion on path.
To respond to Feds question on the tumor report reads"the tumor does not invade the tunica albuginea" 'the tumor does not invade the tunica vaginalis" No satellite lesions are identified. Tumor is well demarcated from the surrounding tissue"
I will certainly contact Reuters office for second opinion. The Ct scan is being done this morning. I was on the phone for hours yelling at insurance for not approving doctors rush request. I finally reached the state of california hotline and they contacted Aetna . this morning they called with approval on the ctscan. It unbelievable what stress the insurance company's add to this process.Karen's mention that surveillance may not be the best choice is probably why we got a referral to radiation oncologist.
I want my son to join this forum but I don't think he is ready yet. Im sure you all know the emotional toll this takes when the diagnosis is new. Again I cant thank you enough for your advice and support. VWM