Rplnd

[mstlyn]

Hi everyone, I have been reading some of the posts on this site and I am very thankful to have found you all. My son is 21 and recently diagnosed with TC and had a left radical oriechtomy on December 20th.
The chest x-ray and lab work he had before the surgery were all normal.
He was scheduled to have his staples removed on Jan 3rd, and then follow up appt. on Jan 15th.
When I took him to have the staples removed I asked to have the follow up appt. date moved up because it was so hard waiting that long for the path report.
The nurse told me that there were no openings sooner than the 15th but that I did not have to wait that long for the path report. She assured me she would call the hospital for the report and call me by the next day.
When I got home that same afternoon, there was a phone message from the doctors office that said I should bring my son back on Friday, which was only 2 days away. Her message stated that the report was in and she could not explain everything to me, so we needed to come in and see the doctor.
Now I am terrified about what they need to tell us that suddenly could not wait until the 15th.
I realize that no one can clear this up for me, but I have been reading some of the possible treatments for TC and would appreciate information from someone that has gone through RPLND and other treatment for this disease.
I have read that RPLND is very serious surgery with some pretty serious risks involved. What can you tell me about your experiences? I read that there can be pain management issues for 2 to 3 months after this surgery as well.
I wish I had information about the type of cancer he has and the stage, but I will know more tomorrow. I guess I just needed to reach out for anything that anyone can tell me. It is late at night and I am unable to sleep

[Fed]

Hey there,

The waiting is definitely the worst part, and I believe someone posted here before saying that the waiting is sometimes worse than the treatment. Everything will become clear once you know what the path report says. Rest assured that TC is still curable even at certain advanced stages. Some forms of TC spread quicker than others, so prompt action is warranted. It's good that the appointment is tomorrow. At the very least by tomorrow you will have a fairly good idea of what to expect. Best of luck,

[Marco1975]

hello,
quoting fed: "Rest assured that TC is still curable even at certain advanced stages".
plus if, IF, your son is going to need RPLND, consider that maybe you could have a Laparoscopic surgery which speeds up recovery time and is not so "invasive".
reagrding the fact that doctors anticipated your son's visit, there is no reason not to act as soon as possible, independently from the nature or extense of the disease.

hope you'll get good news today,
best luck,
marco.

[Lori]

My husband had the rplnd on Nov 16th and he is doing really well. Yes the surgery is scary from the caregivers viewpoint but to my husband it was a step forward towards his cure. We went to IU with Dr. Foster who is one of the best. He has done 1400 over the course of his career. Jon was in surgery for 3 hours and in the hospital for 4 nights. He was able to fly home (2 1 and 1/2 hour flights) the day after he was released. Yes he is dealing with some pain issues in his leg and back, but he is back to work a few hours a day (his job requires him to stand all day, others with desk jobs go back sooner). Most of all, he is in great spirits.

The waiting is the hardest part. Try not to think of all the worst case scenarios until you meet with the doctor. Some doctors simply want to have a face to face for most conversations (good news too!)

Keep us posted on the appt and feel free to ask a lot of questions once you get the path report.

Take care

[mstlyn]

hello,
quoting fed: "Rest assured that TC is still curable even at certain advanced stages".
plus if, IF, your son is going to need RPLND, consider that maybe you could have a Laparoscopic surgery which speeds up recovery time and is not so "invasive".
reagrding the fact that doctors anticipated your son's visit, there is no reason not to act as soon as possible, independently from the nature or extense of the disease.

hope you'll get good news today,
best luck,
marco.

I agree that there is no reason not to act as soon as possible and in fact this is what I wanted in the first place. It was just alarming to get that message to bring him in sooner, after they told me there were no openings before the 15th, which was the initial appt. date.
I will keep the laparoscopic surgery in mind and ask the doctor about it should he recommend rplnd.
Thank you for reassurance about the chances for curing TC. This is what I am holding on to.
I will come back later and let everyone know what I find out at the appt. today.

[mstlyn]

My husband had the rplnd on Nov 16th and he is doing really well. Yes the surgery is scary from the caregivers viewpoint but to my husband it was a step forward towards his cure. We went to IU with Dr. Foster who is one of the best. He has done 1400 over the course of his career. Jon was in surgery for 3 hours and in the hospital for 4 nights. He was able to fly home (2 1 and 1/2 hour flights) the day after he was released. Yes he is dealing with some pain issues in his leg and back, but he is back to work a few hours a day (his job requires him to stand all day, others with desk jobs go back sooner). Most of all, he is in great spirits.

The waiting is the hardest part. Try not to think of all the worst case scenarios until you meet with the doctor. Some doctors simply want to have a face to face for most conversations (good news too!)

Keep us posted on the appt and feel free to ask a lot of questions once you get the path report.

Take care

I am glad to hear that your husband is doing so well. I believe that the attitude of those with disease is a major factor in how well they do and your husband sounds great!
My son does not seem to be concerned at all, but mom is and you are right that the waiting is the hardest to deal with.
Aside from the orchiectomy, initial lab work, ultra sound, and chest x-ray; the doctor has not ordered any other tests such as a CT. Is this the norm?

I will definitely come back to let everyone know what I find out and will probably have many questions. Thank you so much!

[Scott]

I believe that the attitude of those with disease is a major factor in how well they do and your husband sounds great!

Attitude is everything -- when it comes to quality of life.

On the other hand, anger, frustration, sadness, and other feelings are all to be expected, and there's no reason to feel guilty that those feelings will hurt the chances of being cured.

[mstlyn]

Hey there,

The waiting is definitely the worst part, and I believe someone posted here before saying that the waiting is sometimes worse than the treatment. Everything will become clear once you know what the path report says. Rest assured that TC is still curable even at certain advanced stages. Some forms of TC spread quicker than others, so prompt action is warranted. It's good that the appointment is tomorrow. At the very least by tomorrow you will have a fairly good idea of what to expect. Best of luck,

Yes the waiting is the worst, and thank you for reminding me that TC has a high cure rate even in advanced stages. I certainly hope we get good news at this appointment. Thank you and I will come back to let you know what the doctor says.

[dadmo]

mstlyn:
Don't panic over the fact that the appointment has been moved up. It really is hard to explain everything over the phone. When you see the doctor bring a pencil and paper and write down everything and request copies of all your sons reports. See if your doctor can recommend someone for a second opinion, he/she should not be insulted. If possible see if they will contact either IU or Sloan Kettering.
If your son needs further treatment ask the doctor about a sperm bank, yes this will be awkward with your son in the room but it's important.
Try not to get ahead of yourself with how rough the treatment will be but yes gather information.
Please keep us up to date on everything you are told. With all the members we have here we have seen it all and should be able to give some advise and a great deal of comfort.

[Margaret]

I am sorry you are so worried, even though it is normal to feel that way, it is still difficult to get through. Waiting for the tests and scans drove me out of my mind with worry.

The RPLND, if done by an experienced doctor, is major surgery but I feel 100% that your son will get through it okay. I would opt. for the full surgery and not the laproscope because the full surgery has a better track record and less risks...hard to believe but true according to our doc at Sloan Kettering. The day after the surgery my husband was walking around...yes with pain and discomfort, but he was up and making progess. 5 Days post surgery he was allowed to have something to drink and all drainage tubes were removed. He had to stay 7 days in the hospital and he walked onto the airplane home with no assistance from me. 1.5 weeks later he was back at work (desk job) and now, 4 weeks later he is playing with our son, throwing a football, going to the mall, and walking on the treadmill.

They will help your son get well and we are here to support you. If your son would like someone to talk to that has been through it all, I can give you my husband's phone number.

Hugs,

Margaret

[mstlyn]

Well I am back and I have my sons path report. I am a little confused about something though.
When the doctor was
talking my thoughts stopped and focused on these words.

"We need more blood work in two weeks so we can
see if the numbers have come down since the surgery".

My thoughts went back to just before Christmas when I called for my sons lab report and chest xray results. I
was told that the blood work was normal. She DID say however that she did not really understand everything.

I stopped the doctor and asked him what the numbers were and he said...
250 and 500. I do not recall which one was HCG and which was AFP though because after our appointment I asked
for copies of the reports and what I saw began to really mess with my mind.

When I came home and looked them over, this is the only thing I found about the tumor markers.

Serum Tumor Markers: S1: LDH/<1.5 and HCG/<5,000 and AFP/<1,000

Going by all the research I have done on the internet, these numbers are in the norm? I do not understand.

Also, when the doctor said 250 and 500, did he mean 250,000 and 500,000?

Unfortunately reading the reports at home have raised questions that I wish I had known to ask while in his office.

Well I am posting the path report and if anyone understands all of this and has any information about
the type of cancer please give me everything you have, if you have the time. Thank you.


Focality: Unifocal

Tumor Size: Greatest dimension of main tumor mass: 3.0cm

Histologic Type: Mixed germ cell tumor, Embyonal carcinoma (95%) yolk sack tumor (5%)

Primary Tumor pT2: Tumor limited to the testis and epididymis with vascular/lymphatic invasion or tumor
extending through tunica albuginea with involvement of tunica vaginalis.

Regional Lymph Nodes: cannot be assessed

Distant Metastasis: cannot be assessed

Spermatic Cord Margin: Uninvolved by tumor

Other Margins: Uninvolved by tumor

Direct Extension of Invasive Tumor: Epididymis & Tunica Vaginalis

Venous/Lymphatic (Large/Small Vessel) Invasion (V/L): Present

Additional Pathologic findings: Intratubular germ cell neoplasia


Interpretation: Left testicle, orchiectomy: Malignant non-seminomatous germ cell tumor comprising of
embyonal carcinoma (95%) and a small component of yolk sack tumor (5%). Per report the tumor measures
3x2.5 x 2.3cm.

Tumor focally infiltrates the tunica vaginalis with infiltration into the soft tissue surrounding epididymis.

Focus of angiolyphatic tumor invasion is identified. Syntiotrophoblastic giant cells are noted.

Intratubular germ cell neoplasm is present.

The spermatic cord resection margin is negative for tumor.

[mstlyn]

I forgot to mention in my other post that my son will be having a CT scan on monday morning. The doctor said if there is node involvement that he will need surgery and even if they dont see anything it is probably a good idea to do surgery anyway because a percentage of cancers may be missed on the CT.
He also mentioned a couple courses of chemo.

He then went on to say that everything will be alright.. these cancers are very treatable.

Yet when I researched my sons type everything says that the prognosis is not as good for him?

I do not know what to think ..

[mstlyn]

Attitude is everything -- when it comes to quality of life.

On the other hand, anger, frustration, sadness, and other feelings are all to be expected, and there's no reason to feel guilty that those feelings will hurt the chances of being cured.

Those feelings are unavoidable but seem to be my feelings instead of my sons. My son has repeatedly said that he is not worried but he is angry that he has to be bothered with all of these appointments and tests. His attitude has been great though. He continues to go about his business like nothing is going on until we have to meet appointments.

[Scott]

Serum Tumor Markers: S1: LDH/<1.5 and HCG/<5,000 and AFP/<1,000

Also, when the doctor said 250 and 500, did he mean 250,000 and 500,000?

This is the range for elevated markers considered "good risk." I'm sure he meant 250 and 500, but it would really help to have the units of measurement.

It's going to be really important to see what those markers do, since if they don't drop to normal but start to head back up, chemotherapy will definitely be needed.

The vascular/lymphatic invasion increases the likelihood of spread beyond the testicle, but it doesn't mean it has occurred. The high percentage of embryonal carcinoma also means RPNLD may not be the best choice, since that type of cancer can spread through the blood directly to the lungs.

Be assured that if chemotherapy is required, it's a proven cure.

[mstlyn]

mstlyn:
Don't panic over the fact that the appointment has been moved up. It really is hard to explain everything over the phone. When you see the doctor bring a pencil and paper and write down everything and request copies of all your sons reports. See if your doctor can recommend someone for a second opinion, he/she should not be insulted. If possible see if they will contact either IU or Sloan Kettering.
If your son needs further treatment ask the doctor about a sperm bank, yes this will be awkward with your son in the room but it's important.
Try not to get ahead of yourself with how rough the treatment will be but yes gather information.
Please keep us up to date on everything you are told. With all the members we have here we have seen it all and should be able to give some advise and a great deal of comfort.

I will have to bring more of these things up after the CT scan. Although this doctor seems to be doing everything he should, I felt that he did not really want me to ask questions when we were there yesterday.
He began to just start talking and my mind was spinning. Not once did he slow down and ask if we had any questions, and the few questions I did get in I had to rudely cut him off to get those in.
I am making note of questions now before we go back to see him again. The next appointment is on Jan. 23rd and the scan results and new tumor markers should be there at that time.