I am choosing surviellance for stage1 seminoma

[Fed]

Rhoon,

It is awesome that you have been able to click with your med onc so well. I particularly liked how he placed all options on the table and made a solid effort to stay on top of his game. As it turns out, I may end up switching to surveillance pending a second opinion. It seems the preferred guideline for the Dana-Farber Cancer Institute for cases like ours is surveillance, so if the new path report confirms the first, I will switch over. Keep us posted!

[Scott]

That's great news, rhoon!

Single-agent carboplatin made the most recent NCCN guidelines, with a "category 3" classification, meaning, "There is major NCCN disagreement that the recommendation is appropriate."

[rhoon]

It is so good to hear people on surveillance with clean follow-ups! Congrats to you guys.

I met with a medical oncologist yesterday and was totally impressed with him. He is not a tc cancer expert, but he was so knowledgeable and positive that I asked him at the end of our meeting if he would follow my surviellance and he was happy to.
He told me current research supports three approaches to the management of stage 1 seminoma, and all are valid. He offered me two doses of carboplatin instead of the radiation if I wanted it, but said I would have to decide within the next month. Appearantly the window of treatment opportunity for this option closes at three months post orchiectomy. He thinks the long-term risks with this approach are lower than the radiation but he said we would need more years of follow-up in those studies to be sure. He thinks in the future this may supplant adjuvant radiation as the prophylactic treatment of choice. It was good to hear that he was aware of all the current research and even had an opinion as to the direction of future treatment trends! In short, I really like this guy!
If anyone in the north Florida area needs a name of a good oncologist I would not hesitate to recommend him.
I still am choosing surveillance as my treatment plan, and now I feel so much more confident in this doctors hands. What a good feeling!

[GAH]

I too chose surveillence. I'm 17 months into it now and everything's going great.

I had significant anxiety leading up to the Dr. appts, but that has diminished. The last one, a few weeks ago, I had practically no anxiety at all.

I think the biggest issue I've faced is the anger and depression that followed. It wasn't pretty.

Best of luck, rhoon, I hope it goes well.

G.
________
colorado dispensaries

[JAYHAWK]

I am 3+ years into surveillance for Stage 1 seminoma, and for me the mental aspect still exists. Not daily, but I go every six months to have CT scans and blood tests, and the anxiety begins to build before the tests. My last tests were on Thursday and all is still normal....so my anxiety has subsided. Fortunately I have the scans and blood work in the morning and get the results from my oncologist in the afternooon so I do not have to wait several days for the results. I too have had a couple of "scares" which proved to be false alarms.

For me the decision to opt for surveillance was one of the most difficult decisions I have ever had to make and I changed my mind many times. During my decision making process I was able to get great advise from many others through the TC-NET at the Testicular Cancer Resource Centrer which was extremely valuable. The treatment option is a very personal choice, but the use of all available resources allows you to make a much more informed decision.

[Cory]

response to djm

djm, the psychological affects seem to be less now, than early after surgery. The more time passes the more hopeful I become that I may not have a reoccurrence. This can change at a moments notice! Keep in mind that there would still be a chance of reoccurrence even if I had radiation treatments.

I have had a couple of scares along the way. I went to the O.C. Hoag Hospital Emergency Room for an ultrasound check (on a holiday weekend). I was sure it came back, before I received the test results. It was a false alarm. I must have just tweaked my remaining testicle, which caused some swelling. What a relief! I had to go to Emergency; I don't think I would have been able to endure the wait over the long weekend.

Another was just this last summer; I had an aching pain where my abdominal lymph nodes would be. I was holding my breath 'till this last CAT scan. Again, what a relief!

So the fear and the anxiety are still there off and on, although, just less in general. I seem to recall, that I had researched, that I had a 20% chance of reoccurrence at the time I made my decision not to have radiation treatment. My Primary Oncologist said that I would have to radiate anyhow if I had a reoccurrence.

Although, I understood that it would very likely require chemo if it did come back, the doctor said we'd have to see where it appears, before that would be decided. We both decided that it was not the best idea to expose myself to the possibility of (a much worse) secondary Sarcoma, as a result of radiation treatments. Believe it or not, both of the Radiation Oncologists I consulted with were cool with this choice, and actually agreed. Of course, they wouldn't have turned down the business had I decided in favor of radiation treatments.

I should add that the cancer had no indication of having traveled, or spread, from its original location. My decision did not come lightly, and was done with a GREAT amount of research, thought, and personal consideration. Don't let a doctor decide for you! Make your own choice you have to live with it. I consulted some of the best doctors all over Southern California (Los Angeles and Orange County). One highly regarded Urologist, at Cedars, told me that, "if I were his patient, I would radiate or I wouldn't be his patient". I just said, "Thank you" and left.

Sorry about the long post. You asked!

I'm just trying to pay back here for all the information I got on these TC sites when I really needed it. I really hope this helps some of you make the right choice for yourself that you can live with!

Thanks again djm. Following is a clip of my pathology report that you requested. I had two done, just to be sure!

Take care. Good luck to everyone!

DIAGNOSIS:

RIGHT TESTICLE, ORCHIECTOMY:

-Seminoma (See comment)

-Tumor mass measures 3.2 cm in greatest dimension

-Seminoma confined to testicular parenchyma, without
invasion/involvement of tunica albuqinea or tunica vaqinalis

-No anqiolymphatic vascular space identified

-Epididymis, negative for malignancy

-Spermatic cord, negative malignancy

-Tumor-associated necrosis and inflammation (including marked granulomatous reaction)

-Background seminiferous tubules with significantly diminished spermatogenesis (atrophy}

-Pathologic stage: pT1MxMx (AGCC 2002)


1/29/2004

[djmac]

Hi, I've just Cat scanned clean for the 3rd year. I had surgery on 1-13-2004 for a Stage 1, Pure Seminoma. I followed standard US protocol for follow up CAT scans. I did not receive any other treatment than the surgery.

I did consult with many doctors. I sought out second and third opinions. I would estimate 80% disagreed with my choice. It was my choice to make, following much consideration.

I was 43 at the time (now 46). My main concern was that I was still young enough to develop a secondary Sarcoma (a much worse cancer than my Seminoma) from the radiation treatments. The secondary benefit was that I did not have to endure these treatments, and the immediate side effects.

I am very aware that I am not in the clear, yet. It was my choice. So far, so good!

Good luck with your choice Rhoon!

Good luck to everyone!

Congrats Cory, on 3 years free...your not in the clear, but your chances are getting better with each and every passing year, in fact if I remember correctly your chances of recurrance at this point is probably smaller than for someone who got radiation! Have the psychological issues (fear, anxiety...if they ever existed) gotten better with time? Also, could you give some insight on your original pathology?

Thank you for posting... it's great to hear from someone on surveillance for seminoma who is that far out!

Best,

djm

PS In my case surveillance was not only my choice, but also preferred by my uro, and, ironically, by my radiation oncologist!

[Cory]

Good luck with your choice Rhoon!

Hi, I've just Cat scanned clean for the 3rd year. I had surgery on 1-13-2004 for a Stage 1, Pure Seminoma. I followed standard US protocol for follow up CAT scans. I did not receive any other treatment than the surgery.

I did consult with many doctors. I sought out second and third opinions. I would estimate 80% disagreed with my choice. It was my choice to make, following much consideration.

I was 43 at the time (now 46). My main concern was that I was still young enough to develop a secondary Sarcoma (a much worse cancer than my Seminoma) from the radiation treatments. The secondary benefit was that I did not have to endure these treatments, and the immediate side effects.

I am very aware that I am not in the clear, yet. It was my choice. So far, so good!

Good luck with your choice Rhoon!

Good luck to everyone!

[Fed]

Congrats on making your choice! Although I chose the alternative for my treatment, electing surveillance is just as good of an option. The bottom line is that you meticulously looked at your options, and you sound very confident about your choice. To me, that is extremely important. Best of luck, and keep us posted!

[Owen]

Hi Owen,

What kind of TC did you have? Its also so interesting how many people seem to get TC right around their birthday (I did as well)

djm

Non-seminoma

[djmac]

Hi Owen,

What kind of TC did you have? Its also so interesting how many people seem to get TC right around their birthday (I did as well)

djm

[Owen]

Rhoon,

I had the operation about 8 weeks ago (I barely remember my birthday), so was due for the second CT scan las week.

It was funny, actually, I went to the Oncologist anticipating starting chemo on the Monday after Thanks giving, and that was when the Dr. told me my "Advocate" had brow beated him onto calling Dr. Einhorn, who suggested waiting another week, doing the second CT Scan and seeing what changes had occured (I guess 15%+ of lymph node cysts are benign).

Although I am very happy with the Dr.s I have, I would seriously suggest folks ALWAYS get a second opinion/reading on any test they have.

[rhoon]

Owen, although I hope I never need chemo, you will be cured quickly with it. All of us who choose surveillance know that we may one day be in your shoes, but we hope to avoid treatment that is not needed. I hope you do not regret waiting and watching, because there was a good chance you did not need the treatment you are now receiving.

You will be cured with chemo, and yes it will be a drag, but over quickly and then you will get on with your life.

Heres to a speedy recovery!

ps. How long ago was your orchiectomy?

[Owen]

Rhoon,

I had chosen what my oncologist called a "watchful wait", but my last CT Scan showed the lymph node cancer getting bigger, so today is my first day into chemo.

3xBEP is the regimen,

Last Friday I went in to get a PICC, so that I won't have the trouble many posting here have had with needles and veins collapsing.

Wish me luck!

[djmac]

djmac I can feel your break-in analogy as you describe it!

I have also felt the drive to take better care of myself, eating better, and exercising more. I guess this is the "gift" of this disease, giving us more appreciation for the chance to live and be healthy. Here's to hoping it lasts!

It lasts... I've really lost my taste for alcohol and junk food, and coffee is beginning to go as well (though that one is a tough one). Occassionally I will fall off the wagon, and guilt will set in... Lance Armstrong talks about this, too, in "It's not about the Bike".