treatment in Raleigh, NC

[mikes mom]

I am looking for info Re; Treatment experiences in Raleigh, NC

[Paul54]

Mike's Mom:
We have a few active members in the Raleigh area who usually check-in mid-day and evening due to work. Can you tell us Mike's status? Just diagnosed and awaiting orchiectomy? Post-orchiectomy and awaiting final pathology? More advanced treatment being considered?

Believe me, we are more than happy to help, and we're very sorry you even need to be here. We will do the best we can.

Paul

[Les' Mom]

Dear Mike's Mom,

I can offer no advise about treatment in Raleigh. We live in Charlotte. My son received treatment here in Charlotte and then in Indianapolis at IU. If you will post more info maybe some of the guys here have been through the same treatment.

I am glad you have found this forum.

Love,
Pam

[mikes mom]

Right orchiectomy 01/14/08
Teratoma 75%, Seminoma 25%, yolk sac <5%, adenocarcinoma <5%
AFP 342.40, HCG <5, LD 558
Tumor markers nl 2/08. Entered Surveillance
CT pelvis showed 1.7 cm tumor in lung 07/05/08. Abdomen neg.
CT chest 07/1/08: 1.7 cm nodule LLL
VATS to excise LLL tumor. Frozen section biopsy: mature teratoma with small area of adenocarcinoma.
Awaiting f/u appt with ONC to review biopsy and tx options.
Requested onc to consult with Dr. Einhorn.

[boyce]

Hi Mike's Mom.

Sorry to see you on the board, but happy to help in any way.

Where are you going for Oncology/Urology in Raleigh?

[Margaret]

Hi Mike's Mom, Boyce and I are here to help. We live in Raleigh and we will do all we can to help.

[dadmo]

Mike's Mom;
Good job staying on to[ of this. Indiana is cetainly a great place for a second opinion. Lot's of folks here have gotten their treatment directed by them.
I know how scary this whole ting is but with proper and early treatment you have every reason to expect that Mike will be fine.
How is your family holding up? How are you holding up? You mom's, wives and girlfriends take on quite a load with this male disease.

[mikes mom]

Thanks to all who reponded so quickly. It is great to know whe have such wonderful support from such caring individuals willing to offer their personal experiences for the good of others.
God Bless each of you.

[Fed]

Hey Mike's Mom,

If what your post on the pathology report is accurate, then you have made the right choice in contacting Einhorn. A very unusual item in the pathology report is the noted presence of adenocarcinoma. It is likely that some of that adenocarcinoma used to be immature teratoma that transformed. I am under the suspicion that surveillance is likely the correct approach because any other relapses would likely be teratoma, and chemo doesn't do anything against it. Definitely make sure you have a consultation with Einhorn at IU.

Fed

[mikes mom]

That path report was a frozen section during the chest surgery. We will recieve the final path report tomorrow.
I'm wondering if chemo would treat the adenocarcinoma if it is anywhere else. There is a 4-5 mm node in the right lung that has not grown.
The second question I have is...Did it skip the abdomen? Can we rely on the CT scans to tell us that?

[dadmo]

Adenocarcinoma can be treated surgically, with radiation or with chemo. This is one of those situations where you may want to consult with both Sloan Kettering in NY and IU. Early and proper treatment is key. If you should need to make a road trip to Sloan our home is available for your whole family.

[Fed]

Adenocarcinoma is treated differently than a germ cell tumor, and their behavior is likewise different. It depends on what kind of adenocarcinoma it looks like. Adenocarcinoma is a cancer of glandular tissue (i.e. tissue that secretes substances: colon, breast, liver, etc.), and it's properties -which are determined by immunohistochemistry and performed by the pathologist- will determine its treatment. Some react to chemo and some don't. Radiation is used sometimes, as well along with surgery.

[Scott]

If what your post on the pathology report is accurate...

I'd note that at least two forum members have had initial pathology reports that listed adenocarcinoma, but a second opinion determined otherwise.

[mikes mom]

The responses and support from this forum are AMAZING!! Thank you all so much.
I am anxious for Michael's appt. tomorrow with the onc. We want to get the final path report. If she has not contacted Dr. E as we requested we will again request that of her. If she is unwilling to do that, we will contact him on our own.
I wish I had registered in Jan when I started following this site.
Thanks for the advice, support and offer of a place to stay. All so very generous and kind.

[Fed]

I'd note that at least two forum members have had initial pathology reports that listed adenocarcinoma, but a second opinion determined otherwise.

Very true. A second read on the slides will come in handy.

[mikes mom]

We did not get good news today. Michael's tumor was teratoma with malignant transformation. It does not respond to chemo or radiatiion. The only treatment is surgical excision.
His oncologist at UNC e-mailed Dr. E and consulted with another onc at the Cleveland Clinic. The recommendation is surveillance x 5 yrs. This consisits of Tumor markers and exam monthly and chest, abdomen and pelvis CT every other month. Every 4ht month they will add a head CT. Next month he will have head to pelvis.
His tumor markers remain normal. We have to pray that if another tumor appears, it can be resected. If ever ther are too many or they cannot be resected....there is no treatment.
I felt like the air was sucked out of me! I can't just do nothing and I won't loose my son to this awful cancer. The oncologist is very good, very nice and very honest. Michael said he is just glad he does not need chemo. He heard the same thing we did and he is very intelligent so I know he understands. He just does not want to think of it or talk about it or deal with it. He lives for the day. He is a very special young man. He has so many friends cause he has such a big heart and he is such a hard worker. He has been through so much in his lifetime with his Crohn's and now this.
Although the onc contacted Dr. E. I feel as though I would like to contact him myself. Is this possible? How should I go about it. His nurse tells me we have to make an appt. Is that true?

The path report: metastatic teratoma with somatic type malignancy (adenocarcinoma, spindle cell sarcoma). 1.8 cm located subpleural, without pleural invasion. No yolk sac or seminoma identified.

She said it is rare and complicated. All that I have read and understand is that it has a poor prognosis.

Please feel free to provide me with any advice, or bits of knowledge you have regarding this.

Debbie

[Fed]

Hey Debbie,

This is one of the times in which I wish my prediction were wrong. The crucial thing here is that Mike follow the surveillance to the T. With metastatic immature teratoma with malignant transformation, there is little predictability on where it could surface next (if at all). That's why he will need so much radiology as part of his surveillance plan.

The good thing here is that he is considered "in remission", and as long as his scans and bloodwork show up clean, he'll be in good shape. Just remember to be vigilant, and tell Mike to never skip a follow-up. Hang tough,

Fed

[dadmo]

Debbie:
Did IU review the slides or use your local doctors information to make a decision? I won't second guess IU but at Sloan Kettering they will take (demand) copies of all information and then do every test over again to verify the results. I am offering our home as a base and my wife and I as transportation for a solid second opinion. We have done this with people in this family and we will certainly do it with you.
I cetainly don't want you to panic, your son may be fine but we're here if you should need us.

[mikes mom]

IU did not review the slides. She faxed him the path report. I really fell like we need a second opinion and she said she would do whatever we would like her to do. She felt at this time, that it was just to wait and see if it pops up. My fear is where is it going to pop up and will it be able to be surgically removed.
I would like a 2nd opinion on the slides from a noted pathologist. Call it denial but I just cannot accept this.
Thanks again for the kind offer of your home and transportation. We certainly will keep that in mind.
Debbie

[dadmo]

Any time 201-445-2532. Don't be she this is important. It was our son whjo was sick so we understand.

Nancy and Bill Moses. Nancy will answer.

[mikes mom]

Thanks again for your kindness and generosity.
I located Dr. Einhorn's e-mail address last night and sent him a note. I figured I would start there because the onc already contacted him about Michael.
I cannot accept that there is no treatment for this kind of cancer. Maybe there are clinical trials available or some kind of preventative treatment. Perhaps alternative medicine like Suzanne Summers is doing.
We are not going to just stand by helplessly and wait for it to reoccur where it can't be removed or there is too much of it to remove.
IU is only a start in my mind. The next avenue to travel is Sloane.
I'll keep you posted.
Please keep Michael in your thoughts and prayers.
Debbie

[Mrs Moggi]

Debbie - you're family will continue to be in our thoughts. Mike is fortunate to have such a fighter for a mom - go get 'em!

[Scott]

Please keep Michael in your thoughts and prayers.

You can count on it.

[dadmo]

Debbie:
Go get em. Mom's are amazing people.

[Margaret]

Debbie, we are close by if you need anything. Prayers and support coming your way.

[Mom]

Debbie, you just have to get that second opinion. There have been so many screw ups with pathology with this disease. Quite conceivably it might never show up again, but in the event that it does, you have to have a plan in place.

[veryworriedmom]

Debbie I can not tell you how sorry I am to hear what you are going through. You have received good solid advice from the forum members. When we contacted Dr. Einhorn for a second he was very responsive and he will ask that you contact his nurse for an appointment. I think it will be a worthwhile trip to confirm the advice you have received. Many on this forum have been treated by him. Les's mom pam certainly can tell you about options. As a mom I understand your despair. You want to do everything and anything to help your child. We will all pray for you, please reach out for any support you need. Thats what we are here for. Dont forget to take care of yourself. You need your strength to help your son fight this. Marion

[mikes mom]

Hello to ALL!
The last 24 hrs have probably the the most difficult ones in all of my life. Until ....
Dr. Einhorn called me at 6:00 PM tonight. He is one special man and physician. I reviewed Michael's case with him. The first ray of hope came when he said, "This kind of cancer does not go to the brain." I asked him to repeat it so I could write it down. Unbelievable since our oncologist told us that it was probably the next place it would go. He does not recommend the brain scan that is planned for Aug.
He confirmed that Teratoma with malignant transformation is rare and serious. He said since it was in his testicle biopsy that the chances of reocurrance was 50/50. Since it spread between 4-6 mon after the IO the chances are good there is more of it that has not shown up yet. It does not respond to chemo or radiation. With good scanning we should be able to get it early and remove it surgically. He feels there is a good chance Michael will need 1-2 additional surgeries before the year is up.
Another Biggie.......I asked him for the prognosis. He said, "your son will be cured, but it may be a rough road for a while with some additional surgery". And that is the HOPE I was looking for!!!!
He said there was nothing else that he could tell me by laying hands on Michael although he would be happy to see him. He suggested if the next round of scans show anything questionable, we gather our records and come see him.
I thanked him many times for calling me on a Fri evening when he was out of town and most importantly for giving us HOPE! I told him that my hope for him was that he had as wonderful a weekend as we were going to have thanks to him.
I am thankful tonight for Dr. Einhorn's professional advice and for all of you who have checked in on us and offered wisdom, prayers, hospitality, advice, support and caring! Thank you from the bottom of my heart.
I am looking forward to some sleep tonight.
Goodnight to all!
God Bless you and your families with health and comfort.
Debbie

[Paul54]

Debbie, OK, you're still in the forest but I would be enormously relieved it isn't the haunted type. Scary for sure, but surgery is do-able and it seems like there are some amazing advances taking place constantly. I'm sure Mike is as strong as you are, so he will beat this and he won't let it get him down. You're in our prayers. Remember to take care of yourself, too.

[Smartie]

This sounds really hopeful, Debbie. If Dr Einhorn says he will be cured, you can certainly rely on his opinion.

[dadmo]

That's the good news we were all hoping for. Don't forget we'll be here for you, always.

[Mom]

Well, my morning just got a heck of a lot better, I can imagine your's has too, Debbie! You've got a plan in place and you are looking toward the future with HOPE! Wonderful news.

[DianeE]

Wow! What great news and what a relief it must have been for you.

Certainly shows the importance of getting a second opionion from an expert, especially when dealing with something this rare.

I don't think good doctors mention the word "cure" unless they are pretty
positive about it. My son's oncologist told us from day one that my son would be cured and it kept us going through the treatments.

That man is a saint!!!!

Have a good weekend.

Diane

[Already Bald]

.......I asked him for the prognosis. He said, "your son will be cured, but it may be a rough road for a while with some additional surgery".

Rest now, Mom.
It gets better from here.
Joe

[Fed]

Debbie,

It is fantastic that Dr. Einhorn contacted you and helped allay your concerns. Larry Einhorn's concern for all TC patients is a testament to his dedication and work ethic. As far as Mike is concerned, I will re-emphasize that he needs to keep to his follow-ups.

I hope that by having Einhorn's reassurance, you guys will be well prepared to beat this if it resurfaces. Take care and thanks for sharing,

Fed

[Les' Mom]

Debbie,

I am so glad you contacted Dr. Einhorn. He truly, truly cares about guys with TC. As a family, we are so blessed that he does care about our guys. I would believe evertyhing Dr. Einhorn told me. He called every part of Les' TC right. It wasnt what I wanted, but he always was honest with me.

I would encourage you that any surgery he has to have he have it at IU under Dr. Foster if possible.

Remember, we are here for you ... anything you need.

Love,
Pam

[mikes mom]

Since Thurs we have gone from worried sick to relieved after speaking with Dr. E. Today, I am begining to get worried again. We have very conflicting info. The onc at UNC says Michael's kind of cancer can go anywhere including the brain. I have read the same and also read that this rare cancer (Teratoma with Malignant Transformation with adenocarcinoma and spindle cell sarcoma) does not have a good prognosis.
Dr. E. Told me that this kind of cancer does not go to the brain and that he would be cured, probably after 1-2 more surgeries. I was elated with the info from Dr. E., the expert, but I have to say, I'm skeptical.
I feel I have to discuss this with Michael's oncologist. Dr. E said he did not think an appt. with him at this time would provide us with any further info.
Then there is still the issue of a second read on the biopsy slides. The UNC onc says it is not necessary. Now we have 2 bx, the ochiectomy and the lung mass.
As you can see....I am confused and again panicky. Any advice?
Debbie

[Mrs Moggi]

Hi Debbie - I'm sorry that you're having to sort through all of this conflicting advice.

You absolutely need to get a second read on the slides. There is no reason in the world not to. At the very least you'll have a confidence in the results that you don't currently have and that is very important.

If I'm reading correctly, quite a bit of the differences in opinions you are hearing are in what might happen. In which case I would hang my hat on Dr Einhorn's opinion and keep tight on the good scanning and make sure that no surgical option is dismissed until you have exhausted all opinions.

Take care of yourself and Mike,

Jen

[dadmo]

Debbie:
I'm really not pushing but it can't hurt to give Sloan Kettering in NY a call.

[Margaret]

Debbie, I would trust Dr. E over UNC . We looked else where even though we live near UNC because we felt they were not top experts in TC. It is so hard to know who to trust...this is your son's life, not the time to take any chances. Get a 3rd, 4th ...10th opinion if you have to. Find a level of comfort if you can. I know this has to be horrible and I am so sorry. I do feel you are in good hands with Dr. E. Bill's suggestion about calling SK won't hurt.

Hugs

[Smartie]

Hi Debbie. I expect you've done some googling about this. Have you come across this report, about a man with adenocarcinoma of the rete testis? The case is slightly different from Mike's, but similar in some ways. The man is alive with no evidence of disease after ten years

[boyce]

Debbie,

My brother in law is a mucketty muck with Wake Radiology. And he's an all around good guy. I can get Mike's slides in there. Also happy to reach out to teh folks at Rex if you like.

[Already Bald]

Then there is still the issue of a second read on the biopsy slides. The UNC onc says it is not necessary.

I had my slides read three times, and the first lab missed Vascular invasion, which turned out to be a huge omission.
In you case, I would take comfort in the optimisim from Dr. Einhorn, we all know too well that he calls it like he sees it- no matter how hard the news may be.

I agree with DadMo- go to Sloan-Kettering.
They did my third pathology read, and RPLND.
Not only are they experts in TC, but in Sarcoma and all cancer in general.
They have a great web site:
Sloan-Kettering

[veryworriedmom]

Hi debbie Im so sorry you are going through this. I havent got much to add except please get another read on the pathology. It will put your mind at ease that they havent missed something. Its important. Our Doc knew what he saw but said get that second read on the pathology anyway knowing we would always wonder if we didnt get confirmation.Take care. Marion

[mikes mom]

I took all the advice you have given me. I spoke with Michael's Onc at UNC who said they only see about 20 cases/yr of TC. They have only seen one of the kind Michael has 3 yrs ago. I voiced my concerns and she too said she was concerned and would worry along with us. Although nice of her not comforting.
I requested slides to be sent to Dr. Ulbright with IU for a second read on both tumors. Michael's next CT's are the last Sat in Aug. I made an appt with Dr. E on 09/08/08. We will bring the scans and other record with us. I really need to meet him in person and he meet Michael. HE can take a look at the scans and talk to us more about everything.
I appreciate all of these suggestions from all of you that have unfortunately gone through the same thing. It is what I have been thinking we should do all along but I needed a little push from all of you. I always doubt myself.
Thanks so much. I am always open to any information you are all willing to share.
Debbie

[Mrs Moggi]

Good news Debbie. I think on this one your gut is going to be right - even if it does make feel like you are being an annoying nuisance to the doctor. Rather be sitting back with Mike in a few years time laughing about how you became such a pain in the ---.

[Mom]

You go, girl!!

[Paul54]

Debbie,
You passed the test. Welcome to the Momma Tigers club!

[dadmo]

This is a great gift and lesson you're teaching your son. Another momma tiger joins the pride. Super job Debbie.

[mahalomom]

Debbie,
I am so happy you are going to see Dr. E. We just came back from IU yesterday after meeting with Dr. E. He gave us advice no other doctor did. I also asked about having my son's pathology slides re-read. At the meeting time it was decided that Josh's pathology report was very indepth and probably a good read. However, after sleeping on it I woke up the next day and called Dr. E's nurse, Jackie and told her I would feel alot better if they had Josh's slides re-read at IU. We dropped the slides off before leaving Indiana. If the doctors only see a few cases of TC per year, then so do the guys and gals reading the slides.
I found Dr. E. to be extremely confident, kind and knowledgeable. You will feel a comfort after seeing him.
BTW, how old is your son?
~Mary Ann