mini-TC experience and RPLND question

[xifentoozlerix]

i was diagnosed sept 20, 2005 at 18 years old with TC. i never had any symptoms other than a little bit of gynecomastia and anxiety/bipolar types of symptoms for the year before that which i now know were caused by hormone inbalance and high HCG levels. only after i experiencing lower back pain for a few days straight did i go to get checked. i suspected a kidney stone. i knew it wasnt a sprain or sore muscle, it felt very different than any other pain i had ever had. a few CT scans and a chest x ray revealed a very large retroperitoneal mass (6x6x7 cm) along with an "uncountable" amount of lung nodules. my lungs were basically a sheet of white on the chest xray. a subsequent biopsy confirmed it to be TC. i dont remember the exact type but i believe it was embryonal carcinoma with some choriocarcinoma. this shocked me since i never had any lump or ANYTHING wrong with my left testicle other than a hydrocele when i was 6 years old. my HCG was at 175,000 and AFP was elevated as well, but to a much smaller extent. after being diagnosed i went to sloan kettering and thankfully started treatment with dr bosl (thanks to a referral from a neighbor). i IMMEDIATELY began 4 cycles of BEP and finished on dec 15, 2005. my HCG spiked in the beginning to above 200,000 and then plummeted afterward. it is at 6.8 as of ~jan 15 and the trend is going downward. my lungs now have around 30 "spots" left which are much smaller than before and are most likely fibrosis. surgery was not recommended as they would have to remove so much lung tissue i wouldnt be able to normally breath for the rest of my life (and being 19 they figured it would do more harm then good). i am scheduled for feb 3 to have an rplnd during which the necrotic tumor will be removed as well as an orchiectomy to boot. i am wondering how long it took you guys to recover from the surgery, most importantly the incision area.

i am 19 years old now and was in great shape before, and now am in what i would call slightly above average shape. i lost 20, almost 25 pounds of mostly muscle during the chemo. dr sheinfeld (surgeon) and dr bosl both told me it will be approximately a month before i can do anything too physical like weight lifting and i also cannot drive during this time. i was wondering if this is more of a conservative time frame or if it is actually that debilitating of a surgery. i would appreciate if you could give me your age so i can get an idea if it correlates to recovery or has no bearing. any other thoughts are welcome as well as any questions. thanks in advance

[dadmo]

xifentoozlerix:
First welcome to the forums, second I have to commend you for being so well informed about your disease. Very impressive. The RPLND is a major operation as I'm sure you are aware but the recovery time is really quite short in relation to being cured. My son (23) was back to the gym and lifting a fair amount of weight about 8 weeks after the operation, within six months he could do anything he wanted.
One question for you. When they do the RPLND they are also do an orchiectomy? Is that the second testicle?

[xifentoozlerix]

no, it is the first.

the biopsy was from the retroperitoneal tumor. they used a huge needle in my back to get to it. i never had an orchiectomy to diagnose the cancer because it was confirmed by the predictable metastases and tumor markers. bosl was more concerned about starting chemo ASAP then removing the testicle since it had no palpable mass. the testicle looked "abnormal" and "burned out" on the ultrasounds they did, but there was no active cancer there.

[dadmo]

I have to tell you that this is a first for me. It is amazing the things I still learn on this forum. Thank you for sharing that story, and good luck with the RPLND. As you know Sheinfeld is a master and you will be fine.

[Scott]

See this page for an explanation about when chemotherapy comes before the orchiectomy, and why the orchiectomy is still necessary afterward.

In some cases, cancer has spread to other areas of the body and has become life threatening. In these instances, chemotherapy is initiated prior to orchiectomy. When this is done, orchiectomy after chemotherapy is advisable in order to remove the primary cancer. This is because there is a blood-testes barrier to chemotherapy. There are two places in the body where chemotherapy cannot penetrate, the brain and the testes. The blood-testes barrier prevents chemotherapy from reaching the testicle, thereby resulting in a high incidence of residual cancer in the testicle after completion of a full course of chemotherapy. In other words, all cancer outside the testes can be eliminated with a full course of chemotherapy, but there could still be cancer in the testes.

[Scott]

My experience is not a typical example of recovery time after RPLND. I had mine done laparoscopically, although that remains somewhat controversial. Because I had chylous ascites, lots of lymph fluid collecting in the abdomen, it was three months before I began to get back to normal. It's now seven months later, and all is well.

[matthias]

Actually, a burned-out primary TC tumor is not that uncommon. What happens is that the testicular cancer grows at such a rate that the formation of new blood vessels to supply the growth with nutrients and oxygen cannot keep up. (For example, ECs very often have a partial necrosis of tumor tissue reported.)

In the extreme, all of the primary tumor has starved to death because of its excessive growth rate leaving only scar tissue behind, no active cancer in the testicle. That's a burn-out. Unfortunately, one is still left with an unfriendly payload, commonly referred to as metastasis...

[MikeyT]

i had my rplnd on dec 15 in boston and iam 26 years old.. iam back to work as a police officer full duty 6 weeks later.. i had no complications and feel great... i have been back to the gym lifting and running...

[xifentoozlerix]

does anyone have a roundabout figure on the percent of cases of post-chemo RPLND resulting in retrograde ejaculation?

this is obviously something which i dont want to happen. i know that sheinfeld is supposed to be one of the world's best at the technique but i am still having a bit of anxiety about the possibility.

[dadmo]

xifentoozlerix:
I know you were looking for a percentage but I do think it's very much tied into the experiance of the doctor. There are several people on this forum who have been worked on by Dr. Sheinfeld and to the best of my knowledge none are suffering from a retrograde problem. As soon as Dr. Sheinfeld finished the operation he told me that he was able to save the nerves, he could not guarentee that prior to the operation. As it turned out Jason had to wait almost a year for that function to return which, most guys are back to normal in 3-4 months.

[Chris'Mom]

My son Chris had his RPLND with Dr. Sheinfeld, and immediately after the surgery he told us he was able to to nerve sparring...and within three weeks Chris had that function back...Mary Ellen

[Shory]

Post-Chemo RPLND´s have a 70% good chance of forward ejaculation recovery, depending on the size of the mass and obviously the exoerience of the Surgeon.

I had a post chemo RPLND done at jackson Miami to take out a 7cm mass, and ejaculation came back perfect 2 weeks later.

Dr. Sheinfeld is extremely bonified in the area, he is probably the one who does more RPLND´s in America with Dr. Foster at IU, so don´t worry, you´re in great hands, besides, he´s from Venezuela (my country) that´s a plus!!!

Your case is very similar to mine, but I had 4 BEP plus 4 TIP, My B-hcg was 186.000.
One more thing, I was back to training about 2 months after and did a sprint Triathlon 4 months later!
Best of Luck

[xifentoozlerix]

update

im currently recovering from my rplnd and orchiectomy in mskcc. theres some really good news and some annoying bad news. i didnt need the nephrectomy as was thought highly possible and the operation went really smooth. it ended after just 5.5 hours as opposed to the 7 they thought it would be. the bad news is, while the incision and bowels are doing great, yesterday i started to get a lot of swelling in my scrotum. this wouldnt be so bad if it didnt get worse by today and now is the penis and scrotum. this is putting a whole lot of pressure on the bottom of the incision and the skin of the scrotum is kind of sore. im worried it will not improve (right now i would guess its about the size of a grapefruit and weighs about 4 pounds in and of itself). anyone experience this and have any insights into what to expect? sheinfeld said its fine and will go away soon but his demeanor in the post operative setting is far from reassuring. thanks in advance

[Scott]

...yesterday i started to get a lot of swelling in my scrotum. this wouldnt be so bad if it didnt get worse by today and now is the penis and scrotum. this is putting a whole lot of pressure on the bottom of the incision and the skin of the scrotum is kind of sore. im worried it will not improve (right now i would guess its about the size of a grapefruit and weighs about 4 pounds in and of itself). anyone experience this and have any insights into what to expect?

I had exactly the same problem after my RPLND last summer. It lasted for a couple weeks and then improved, long before my chylous ascites stopped.

[xifentoozlerix]

a few weeks? wow. i just read the thread you had about your surgery and i must say you are a TROOPER. i wouldve mentally degenerated long before i would have healed had i gone through that. i hope that i can maybe get some of your mentality to rub off and also NOT have such major complications as you had