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Chemo or Surgery or Both?

Mntlcase
Posts: 5
Joined: Oct 2009

Hello, just looking for some feed back. I am 45yrs old, Married, Father of 5, Drive a Gasoline tanker truck for a living. Oct. 7th, 09 went to my Doctor for a hard right testical. He sent me down to our Hospital for an ultrasound. Scheduled a appt. for Urologist on 8th. Ultrasound tech showed me that it was over 90% covered. Urologist confirmed and scheduled a Orchiectomy for Oct 14,(had to wait 7 days because I was on an Asprin reg. for my High Blood Pressure)

I am at Stage IIb spread to Renal Lymphnodes cluster of 4 under 5mm

Bioposy came back with Mixed Germ cell tumor (4 types) 50% Embryonal Carcinoma, 30% Seminoma, 15% Yolk Sac Tumor, 5% Mature Teratoma. Very rare to have 4 different types Onocologist tells us.

Onocolgist (going to same treatment option web site i went to) shows RPLND 1st with Chemo as needed.

She would like to do Chemo 1st in the hopes that the 5% Mature Teratoma is not in my nodes.
(The mature teratoma is not affected by Chemo or Rad.)

Just wondering if someone could give me some other advice. I have been to allot of web sites and feel comfortable with either treatment option. Just been a hecktic last 3 weeks.

***Update Last of test confirmed no other spreading of cancer start Chemo 11/16/09 with Etoposide,Bleomycin and Cisplatin.

slapshot_81's picture
slapshot_81
Posts: 20
Joined: Nov 2009

I am a 42 year old, father of 3. I have been recently diagnosed with same. Mine started back in August. We were on vacation and I noticed a lump in groin, left side. Before this, Every so often I would get a dull pain, lika a toothache and it would go away. I'm pretty active and figure is was a strain from skating or running. I assumed it was a hernia becuase of the location. I immediatley contacted my PCF, he thought it a hernia, had an abdomenal u/s, which showed "normal swelling" of a lymph node on the left side. PCF then sent me to a urologist, had not idea, said it was not a hernia. He sent me for a testicular u/s, Abdomenal CT, chest CT and chest x-ray. The abdomen CT showed lymph nodes that were larger than normal. The exact wording on the report was "an extensive iliac chain". The largest node is 3.5cm. The testicular U/S showed an abnormality in the right side. All blood work to this date has come back normal.

Luckily my wife is an oncology nurse at a cancer center (she needs be my wife and support, not my chemo nurse)So I will not be treated there. I saw a surgical oncologist, as a second opinion. He checked me top to bottom for any superficial lymph nodes, none were found except for the one in my groin. He did determine that I have a hernia, but was concerned about the lymph nodes in abdomen.

I had a biopsy last Friday 10/31, he called me Tuesday night. Same thing, embryonic, mixed seminoma and nonseminoma. I met with a specialist in testicular cancer yesterday at the Dana Farber Cancer Institute. They took blood to set the tumor markers, I guess they look for 3 things, 2 of them came back normal, 1 was slighty elevated, I'm optomisic about that.

I was told the positive thing is that this type of cancer is CURABLE!!! eventhough it is in the lymph nodes, the success rate of a cure is 96%. Not bad is you ask me. They gave my father a 25% chance of cure when he was diagnosed with small cell lung cancer.

The oncologist is putting together the treatment plan. I will be having another u/s. We are in the same boat, the team is not sure if I will have surgery first to possibly remove the testicle if there is definitley a tumor and possibly some lymph nodes. Personally I would rather have the surgery first, heal and then start the chemo, but it's not my call.

I probably felt the same way to did, I felt that my world was coming to an end. There is one word I repeat over and over to myself all day....HOPE.

I'm not afraid of the surgery or maybe losing a testicle, they can put a prosethic one in and call me "lefty". I'm scared of the chemo, not knowing how my body will react to it, I'm worried about work. I'm worried about how my kids will handle it, My son's favorite hockey player is Phil Kessel and he beat the same thing, so that keeps him going.

Good luck with your chemo and stay strong. Please stay in touch, we are in this together.

If it's any help to keep you going, My aunt passed awat last week from 25 YEAR BATTLE WITH BREAST CANCER. She will be watching over us. She went more than 15 rounds with a heavywieght.

Best of luck, stay in touch.

Mntlcase
Posts: 5
Joined: Oct 2009

Have received more good news, my blood marker(s) have fallen by 1/2. My Oncologist said that should continue. Had my Pulmonary check (lungs) came back at 98% usage. Guess I get to meet with him every 2-3 weeks to make sure the Bleomycin does'nt mess up my lungs. Had another blood marker check on 11/9, have another the morning of my chemo on 11/16, but I believe that one is to check my blood for white/red blood cell count as well.

I had the Orchiectomy(right)"ball removal" surgery already 10/14, took about 2-3 wks to fully recover, I opted not to have a replacement ball put in, too late in the game for me to impress wife...lol...besides the risk of infection/rejection, ect. is just not worth it. I'll just keep my cell phone in my right pocket to balance me out...lol

I too am worried about chemo, the not knowing, reading about the worst & best case senario's. Sometimes to much info is bad too. The option of having a RPLND
(Retroperitoneal Lymph Node Dissection) Here's a good starter list of possible problems:

-Infertility due to retrograde ejaculation. If the doctor cuts a nerve during the surgery,
and it is very easy to do this, you will lose the ability to ejaculate normally. You'll
still ejaculate, but your sperm will end up in your bladder!!
-Prolonged bowel inactivity (also called "ileus")
-Bowel obstruction
-Large scar and possible infection
-Pain management issues - You will definitely be feeling the effects of the operation for
2-3 months.
-Interior damage to surrounding organs, blood vessels, etc.
-Infection from blood transfusions
-General infections
-Lymphocele - lymphatic fluid continues to collect in the removal area

Or Chemo BEPx3 or EPx4

We have chosen the Chemo BEP for 3 mos treatment and pray that all returns to normal. If not will have to have the RPLND as well.

I shaved my hair down to my every 6 mos or so military haircut, so my younger kids won't have much more of visual shock. Met with grade, middle, and high school counselors, let them know what is going on, if my children need someone else to speak with besides Mom & Dad. I have had my "cry's" with all of my children. told them I will fight as hard as I can....the rest is in God's hands...

Thanks good luck too you as well...

slapshot_81's picture
slapshot_81
Posts: 20
Joined: Nov 2009

That is great news. YOU WILL BEAT THIS!! Sounds like we are both on track. Smart move talked to the kids teachers. We did the same as well.

I met my oncology team at the Dana Farber last Thursday. I could not be nore pleased. The took more blood to double check tumor marker 2 are still negative and 1 is still only slighty elevated. I start chemo this Thursday 11/19, I am scared but 90 days is nothing. I marked the dates on the calender, it made the timeline easier to understand (done my mid January) and I'll be complete with the 3 rounds of BEP as well. I'm sure there will be days that I wish I was dead from the effects of the chemo, I may have to have a RPLND at the end of the treatment but that is worst case. I have a brain MRI scheduled for later on today, as a double check to kae sure nothing has spread and lung test tomorrow.

Luckily I will not need to have "righty or lefty" removed. They had found through a 2nd u/s and CT Biopsy, that the germ cell cancer did not start in the testicles, it started in my lower abdomen and spread to the lymph nodes. However they still treat it as testicular. I was told it's 100% treatable and 3% chance of return within 5 years.

My kids took it hard at first and I too had my crys with them, but I used Lance Armstrong and my son's favorite hockey player Phil Kessel as an example. I plan on skating and running again my mid to late March.

Best of luck, please stay in touch and let's telling each other know how we are doing. E-mail me if you want at b.pugliese@verizon.net

My prayers are with you and family.....PEACE!!!!!

slapshot_81's picture
slapshot_81
Posts: 20
Joined: Nov 2009

Mntlcs,
Just checking in to see how your doing. I started cycle 1 of my treatment today, I go tomorrow, sat, sun, mon, fri 11/27, wed 12/3 off for awhile then start cycle 2. Today being the first day was a long long day. We got there around 10am and by the time I checked in took vitals, labs and saw the doctor I didn't start until around 12pm, just got home at 5:30pm.

The only problem I'm having tonight is that I can't stop pissing, I was hydrated for 2 hours before I had any chemo infusions. I have had over 3 liters of fluid pumped into my body!!!!!

Brendan
Posts: 10
Joined: Jun 2009

HAHAHA!!! I have always been very open about my treatments, the disease, and pretty much everything that regarding TC. It's fun making others uncomfortable at the expense of making them think and be more cautious later.

Anyway, this little fact slips my mind all the time about the treatments. I swear, I spent 5 minutes PEEING a couple hours after every treatment. They really do pump you full of liquids.

Dave Jenkins
Posts: 3
Joined: Dec 2009

Greatings to all of you. My name is Dave and I am a testicular cancer survivor. I am new to this message board, so please bare with me. I am 45 years old. I have had testicular cancer not once, not twice, not thre times, but four times. It started 20 years ago with a back ache. I had RPLND done and 3 cycles of BEP. I went into remission for 8 years, and found out on a routine F/U exam that it had metatasized to my lung. I had 4 more cycles and remission for 5 years. Mets. again to my abdomen and lung again. 4 more cycles and remission for 2 years, 4 more cycles and remission for 2 years, then a WHOLE lot of abdominal surgery. I have been in remission since then, (3 years). The reason that I am saying this is for one reason. Follow up appointments are EXTREAMLY important. As time goes on, we become complacient and skip our appointments. I am told that it is virtually statistically impossible to have testicular cancer this many times, and survived.

Yes, the Chemo SUCKS, but it does get better. For toose of you who are currently going through chemo, just remember, IT DOES GET BETTER!!!!!!!!! Diet is very important to your recovery. People will tell you what to eat and what not to eat. I can tell you to listen to your body. Eat what ever you want. If you want cheese burgers, eat them. Sometimes all you need is the protein and starch and your body will tell you. Listen to it. If anyone has any questions, please feel free to contact me. I was also in the medical field as a paramedic, as well as an intermedicine tech. for many years. I am currently retired and am going to UNLV for my Bachelors in Psychology. My personel E-mail address is VPOKER81@cox.net. Please feel free to contact me if you have any questions. I will help anyone who asks.

God speed in your recovery. Remember, you are not alone

Dave

Dave Jenkins
Posts: 3
Joined: Dec 2009

Greatings to all of you. My name is Dave and I am a testicular cancer survivor. I am new to this message board, so please bare with me. I am 45 years old. I have had testicular cancer not once, not twice, not thre times, but four times. It started 20 years ago with a back ache. I had RPLND done and 3 cycles of BEP. I went into remission for 8 years, and found out on a routine F/U exam that it had metatasized to my lung. I had 4 more cycles and remission for 5 years. Mets. again to my abdomen and lung again. 4 more cycles and remission for 2 years, 4 more cycles and remission for 2 years, then a WHOLE lot of abdominal surgery. I have been in remission since then, (3 years). The reason that I am saying this is for one reason. Follow up appointments are EXTREAMLY important. As time goes on, we become complacient and skip our appointments. I am told that it is virtually statistically impossible to have testicular cancer this many times, and survived.

Yes, the Chemo SUCKS, but it does get better. For toose of you who are currently going through chemo, just remember, IT DOES GET BETTER!!!!!!!!! Diet is very important to your recovery. People will tell you what to eat and what not to eat. I can tell you to listen to your body. Eat what ever you want. If you want cheese burgers, eat them. Sometimes all you need is the protein and starch and your body will tell you. Listen to it. If anyone has any questions, please feel free to contact me. I was also in the medical field as a paramedic, as well as an intermedicine tech. for many years. I am currently retired and am going to UNLV for my Bachelors in Psychology. My personel E-mail address is VPOKER81@cox.net. Please feel free to contact me if you have any questions. I will help anyone who asks.

God speed in your recovery. Remember, you are not alone

Dave

slapshot_81's picture
slapshot_81
Posts: 20
Joined: Nov 2009

Just checking in to see how things are going for you. I finished by second round of BEP, start the 3rd and hopefully last round on 1/2. I have been feeling pretty good, more tired at night. I have continued to work except for the treatment days. If I get tired I just go home, work has been very understanding, I guess 20 years of service can have it's benefits.

After reading Dave's posts above, I can relate to some strange eating habits, I have actually gained a few pounds. Today I buried a bacon double from Wendy's with fries, it didn't have a chance!!!! I eat smaller meals on the treatment days and have not needed to take much of the anti nausea meds, but need to take Prilosec, I get gas and heartburn on the chemo days. I have trouble sleeping on the treatment days, a) because I piss every hour and b)from the decadron steriod on the chemo days, tylenol pm works good. I sleep good from 7pm to midnight then I toss and turn the rest.

I also started eating lots of strawberrys, blackberrys, blueberrys, rasberrys, etc, the nutritionist I met with suggested it because of the antioxidents, they seem to give me more energy as well.

You and your family are in my thoughts and prayers, hope you have a great Holiday season!!!!...PEACE

Mntlcase
Posts: 5
Joined: Oct 2009

Finished my 3rd round(5day)chemo 1/1/10. With the reduction of saline with my premeds and the 2 main meds my water weight gain stayed within 5 lbs. Great week from start to finish. Still started my heavy sleeping on about Wed of treatment and runs for about 7 days. Feel like myself again today. Nausea a little more this cycle, but meds help take off edge. I am doing the same with fresh fruit, does help. Next round scheduled for 1/18-22/10. Then probably have a scan done to see if lymph nodes reacted to chemo and reduced in size. I unfortuately, have not been able to return to work both due to the treatment but also Safety driving reasons...lol don't need me behind the wheel of a Semi now.

Hoping for you and all to have a better 2010.

Mntlcase
Posts: 5
Joined: Oct 2009

Finished all 4 rounds of chemo (EP) Had CT/Pet scan on Feb 17th. Met with Dr. on 19th she said the results showed my lymph nodes all were back in "normal" range (size). I could opt for surgery or do survellance. Doing the survellance. Meet every two months for Chest x-rays and Blood work (tumor markers) for 1st year, then every 3 mos, the second year, ect.

Have my 1st check coming up on April 19th get results on April 26th. Hopefully be back to work by May 1st.

My hair on head and face has started to grow back.(about 6 weeks after my last chemo cycle)

Hoping your results are good as well,

Mike

Bigmikedc
Posts: 15
Joined: Apr 2010

I've just joined and wondered if anyone was active around here. I'm sarting BEPx3 on Mon 4/19/2010 and was looking for anyone with experience w/ this treatment for discussion. Thanks in advance.
Mike

lineman's picture
lineman
Posts: 14
Joined: Jul 2009

i went through chemo and one week ago had the surgery. if you have surgery first, then they can do it orthoscopicly. if you have chemo first then they have to do the surgery open. so i have a scar from my breats bone to my pelvic bone. having it done orthoscopicly will reduce the risk of cutting the nerve that causes reverse edjaculation. on the same hand if reverse edjaculation is the worst side affect from a normal surgical procedure, that is not too bad. I reccomend to go to the best cancer hospital you have that is anywhere near you. i am glad i did for my second opinion. just to let you know. they found teratoma in 9 of my lymph nodes. They only saw a couple swollen lymph nodes on my cat scans. so it is alot to think about

Bigmikedc
Posts: 15
Joined: Apr 2010

Wondered how your surgery turned out? I thought my guy was pushing for surgery 1st and I really didn't like what I was hearing about it. It didn't sound like lapriscopic was even an option. Was pretty stoked when he said he was going for BEPx3 instead until I found out the regimen- 5hrs- 5 days inna' row (then 2 1 day boosters) over 9 wks. Starting 4/19/10 Will discuss surgery *after* that probly.

Davepet's picture
Davepet
Posts: 92
Joined: Dec 2009

It wasn't as bad as I expected. Those 5 day weeks pass slowly & the weekends after were when I felt the worst, the pre-meds they gave me before each treatment did an excellent job of keeping nausea away during the week.

The weeks with just the one treatment of Bleomycin were no problem for me.

My biggest side effect was extreme fatigue, which is still lingering 2 weeks after my last treatment, although it is improving.

If you have any specific questions, feel free to ask.

Also, I noticed you posted similar questions in several other threads, hopefully this discussion doesn't get scattered all over the place as a result.

Dave

Bigmikedc
Posts: 15
Joined: Apr 2010

I did get scattered around but hopefuly can contain it all. Glad to hear you didn't have much of a problem except for fatigue. After 1 course and a booster my weekend was bad (tho hopefully we cured the headache) but the booster left me extremely ill for 6.5 hrs. Hopefully that will be the worst of it.

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