Spine Met? - 1254935

chebird
Posts:104

My husband has an intradural extramedullary enhancing mass measuring 11 X 11 X 23 mm at T12-L1. He had additional MRIs today of T and C spine to see if there are any other tumors. Both the oncologist and the neurosurgeon say they doubt if this is a met since it looks like a neural sheath origin. The neurosurgeon wants to do surgery and get it out if this is the only tumor, and hence, presumably not a met.

My husband is in quite a bit of pain from this. Hopefully my signature shows up which states he was treated with chem/rads fall 2011 for a Pancoast which had extended into T1/T2, so I am obviously apprehensive that this could be a met. Also, this surgery would be "an 8 out of a 10" in terms of nastiness, and even though only scar tissue is all that shows up where the Pancoast was, I am nervous of putting a stage 1V lc survivor through a possibly disabling back surgery.

So my question is, is it possible to biopsy a tumor in this location before surgery? Or is a biopsy just as "nasty"?

Blessings to all,

Holly

Forums
Full Archive

Reply # - March 19, 2013, 09:39 PM

Dr West
Posts: 4735

I would say that the appearance of these nerve sheath tumors is characteristic enough that I've generally just seen them undergo surgery and can't recall a time when it didn't turn out to be what the surgeon and radiologist suspected. They're pretty different from the appearance of a metastasis. While you can "never say never", I haven't seen a biopsy done for this clinical situation. I would therefore consider there to be good reason to defer to the surgeon if they're confident of what they're seeing.

-Dr. West

Reply # - March 28, 2013, 01:47 PM

chebird
Posts: 104

We had the appointment with the neurosurgeon today to review the T-spine and C-spine MRIs, and there is another tumor in the thoracic area. The NS said it could be multiple schwannomas, or it could be a drop met. Vicente has a brain MRI scheduled for tomorrow (his first), and if clean, there will be spine surgery. The surgeon wasn't familiar with Tarceva. So I did a quick search here, and the most relevant post I could find was where Dr. West said,

" There are no real guidelines, but I personally might suggest stopping just days before, and even then, saying days instead of hours is just being conservative. You wouldn't expect any significant problems with wound healing from Tarceva."

What would be the reason, if any, for interrupting the Tarceva treatment? The neurosurgeon does not want to stop it all.

Thanks and blessings as always,

Holly

Reply # - March 28, 2013, 02:26 PM

catdander
Posts:

Good question Holly. I'll ask a doctor to respond and you'll hear back within the day.

All the best to your husband and you,
Janine

Reply # - March 28, 2013, 09:28 PM

Dr West
Posts: 4735

There's no clear reason to. The main reason is that most anti-cancer therapies tend to drop blood counts or have other short-term or longer-term side effects that would be problematic around the time of surgery. With Tarceva, really problematic side effects are pretty rare. But there's often a wariness about having patients on anti-cancer treatments right around the time of surgery, even if that's mostly based on habit based on other agents.

-Dr. West

Reply # - March 28, 2013, 11:22 PM

laya d.
Posts: 714

Holly - -

I just saw this thread, and I'm so sorry to read of your husband's new issues. Hopefully, his MRI will be clean clean clean, and the surgeons will take care of his problem for him. I will be thinking of you both. And, please please please keep us posted.

Laya

Reply # - March 29, 2013, 06:04 AM

chebird
Posts: 104

Dr. West,

Many thanks again for your straight-forward answer.

Layla,

Thank you for your caring post.

This site is amazing!

Holly

Reply # - April 1, 2013, 06:24 PM

chebird
Posts: 104

Layla,

The brain MRI came back clean so we're scheduling spinal surgery!

Thanks!

Holly

Reply # - April 1, 2013, 07:20 PM

JimC
Posts: 2753

Holly,

Great news on the scan! Good luck with the spinal surgery.

JimC
Forum moderator

Reply # - April 1, 2013, 09:36 PM

Dr West
Posts: 4735

Congrats on the MRI, and good luck with the surgery!

-Dr. West

Reply # - April 2, 2013, 06:57 AM

apra
Posts: 142

Holly,

I just saw this post. I am so Appy for the clean brain MRI. I heard that Cyberknife is also a posibility in such cases. This is my layman's view on spine surgery.

I am praying that everything goes well for Vicente.

Apra

Reply # - April 23, 2013, 05:52 AM

chebird
Posts: 104

Good morning all,

Just a quick update on my husband.

Additional MRIs revealed another tumor higher up at T5, but we went with the surgery anyway to remove the troublesome tumor at T12/S1.

The neurosurgeon said the tumor was a neurofibroma, more than likely benign, but it was sent to Stanford for clarification.

After the surgery, Vicente had a nasty spinal fluid leak. At times it was 40 ml/hour. So he went back in for additional surgery to stop the leak. Superglue was mentioned :)

He's been home from the hospital since Saturday and is doing very well - walking all over the place. He's a Mexi-CAN!

It's weird; the lung cancer has actually taken a back seat through this.

Blessings to all,

Holly

Reply # - April 23, 2013, 06:14 AM

JimC
Posts: 2753

Great news, Holly! I'm happy to hear that Vicente's surgery went well and that he's feeling better and active. I hope the tumor is confirmed as benign.

JimC
Forum moderator

Reply # - April 23, 2013, 07:19 AM

apra
Posts: 142

Holly,

I'm so happy for you. May the good days increase and increase. Mexi-can and Mexi-will.

Apra

Reply # - April 23, 2013, 11:48 AM

laya d.
Posts: 714

Great news, Holly. Thanks for updating us. . .and glad that lung cancer has taken a back-seat in Vincente's life. Hopefully it will stay there for a long long long long time.

xoxo,
Laya

Reply # - April 23, 2013, 12:44 PM

Dr West
Posts: 4735

Sorry for the setbacks, though it's good that this is all ending up as fixable problems. And it should work out that a neurofibroma is more of a speed bump than anything else in the long run. Good luck with his continued recovery.

-Dr. West

Reply # - May 2, 2013, 01:42 PM

chebird
Posts: 104

The neurosurgeon called me at work. He got the biopsy report back from Stanford - adenocarcinoma, the same as his lung. Everyone thought it was a benign neurofibroma. I am terrified. His brain MRI was clean. I asked my husband if he has had any thing different, and he said that the other day, he had a lot of wavy lines in his vision which lasted about an hour. Could this be the start of lepto? I don't know what to think. We are both so numb. I seriously believed we were one of the lucky ones. He has been NED since treatment.

How is cancer inside the spinal cord treated? He still has another tumor at T5 (I think that's where it is). We see the med onc Monday morning and the neurosurgeon Monday afternoon. What questions do I ask? It's so hard to think.

Thank you for any insights.

Holly

The hospital just called. He's having a bone scan tomorrow morning.

Reply # - May 2, 2013, 07:24 PM

double trouble
Posts: 573

I'm sorry Holly. You will both be in my thoughts.
Debra

Reply # - May 2, 2013, 07:26 PM

chebird
Posts: 104

Thanks Janine,

I will for sure ask his dr about pulsed Tarceva on Monday. No one has mentioned lepto - I'm just projecting. I was so worried about surgery when we didn't know what we were dealing with. Now, I'm scared that we've made the wrong choice. How can a cancer inside the spinal column be operated on without spread into the fluid? I know this is rare, but it . . . .

Holly

Reply # - May 2, 2013, 09:03 PM

JimC
Posts: 2753

Holly,

I'm sorry to hear about the test results. As far as the possibility of lepto, please try not to assume too much at this point. LMC is not a common complication, and it usually presents as a number of different neurological symptoms - unsteady gait, double vision, hearing loss, etc. rather than one particular symptom. So I would not jump to that conclusion at this time.

JimC
Forum moderator

Reply # - May 2, 2013, 10:11 PM

Dr West
Posts: 4735

I'm very sorry to hear that, but I really agree not to jump the gun on making these presumptions -- the leptomeningeal carcinomatosis diagnosis is a very hard one to make, and the symptoms can be very non-specific. It sounds like they're in fact-gathering mode, which sounds very appropriate. Just clarify where the cancer is and where it isn't, and then make plans from there.

-Dr. West

Reply # - May 3, 2013, 07:05 PM

chebird
Posts: 104

Thank you all so much for your caring replies.

Sorry about the jumping the gun. I'm just worried that some of these little buggers might have gotten into the spinal fluid. My horse vet won't remove melanomas unless they are bothersome because they pop up other places after surgery. I know lc is way different than horse tumors, it just worried me.

Can anyone tell me how a cancerous intradural neural sheath tumor is treated? Is it even possible to use radiation on these? The neurosurgeon (when he thought we were dealing with neurofibromas) said he would leave this one alone as it's in a difficult spot for surgery.

Vicente had a bone scan today, so I'm sure the game plan will depend on the findings.

Again, thanks so much for all of your insights,

\Holly

Reply # - May 4, 2013, 06:14 AM

chebird
Posts: 104

Thanks, Jim,

Very informative article. Having an intradural extremedullary tumor which is a met is apparently not the norm. Usually these would be drop mets, but the MRI was clean. But I noticed in the article, it was said that they are usually benign. This truly surprised all involved. I'm pretty sure the NS wants to go with resection.

Again, thanks.

Holly

Reply # - May 4, 2013, 04:10 PM

Dr West
Posts: 4735

I'm sorry I don't have any insight to offer. This is now a bit too far from what I do. Good luck.

-Dr. West

Reply # - May 4, 2013, 04:24 PM

chebird
Posts: 104

Thank you Dr. West for your honesty.

Everyone involved are scratching their heads.At least Vicente is at peace with whatever happens. He has come to the Lord through this nightmare.

Thank you all,

Holly

Reply # - May 8, 2013, 08:13 PM

chebird
Posts: 104

Hello again.

I have two quick questions. We go tomorrow for a consultation for radiation for Vicente's spine mets. The neurosurgeon said to be sure the radiation was done for the entire spine :(

How much progression would indicate that Tarceva is not working any more? For example, would NED for lung cancer, but mets to spine be a good reason to discontinue Tarceva?

I read some old posts about concurrent radiation and Tarceva, and the opinions varied greatly. Do we have any new information on whether this is dangerous or not?

I so appreciate any insight; it seems like one wrong guess can change everything.

Holly

Reply # - May 8, 2013, 11:08 PM

Dr West
Posts: 4735

I'm sorry to say that all of this remains in the range of judgment calls. Technically, though, the appearance of new lesions is considered progressing disease, but individual oncologists, and I suspect even the experts, will vary greatly in whether they consider progression with one or a few lesions but control elsewhere as the glass "half empty" or "half full". Some will weigh the progression as the key factor and favor moving on. Others may be impressed at the progression that hasn't happened and consider the Tarceva still very valuable to continue, either with or without any new treatments added.

As for the radiation and Tarceva question, I described in a video post from January or February a report from MD Anderson Cancer Center that described their experience of doing whole brain radiation concurrent with Tarceva (erlotinib) and noting no unexpected ill effects, but I remain cautious about giving Tarceva or chemo concurrent with radiation in an unstudied setting, especially if neurologic structures are involved. The spinal cord is a tricky place to radiate, and the consequences of excess dose are serious, so my personal approach is to hold back unless it's very clear that it's necessary to continue it through the radiation. If someone is experiencing worse cancer symptoms that seem to be related to being off of Tarceva for too long, I'm more comfortable adding the Tarceva back, because at least you've proven it's necessary, and you've also given at least some of the radiation without concurrent systemic therapy.

Good luck.

-Dr. West

Reply # - May 9, 2013, 06:49 AM

chebird
Posts: 104

Dr. West,

Thank you so much for your in-depth answer.

You have given me much to ponder, and I'm a bit more informed for the appointment today.

The tumor that was removed in April was a perfect match to the lung cancer (although the path report said they couldn't be sure that it was lung cancer due to TTF1 and Naspin being negative). The original Pancoast responded so well to radiation: there's nothing in the lung. I can only hope the remaining spinal tumor at T5 will respond favorably as well.

The frightening thing is the neurosurgeon said the only way for a cancer to get inside the dura is via the spinal fluid.

Again, thank you for your expertise and time. I believe we are now on the slippery slope :(

Holly

Reply # - May 9, 2013, 05:29 PM

chebird
Posts: 104

Thanks Janine,

You are such a blessing to me.

The radiation oncologist is going to radiate two blocks: thoracic spine and hip - for palliative purposes only. He feels that Vicente's severe pain in the hip area is more than likely cancer, even though nothing has shown up on a scan. After all the scans we have had read/reported/assigned wrong, I believe him.

I was concerned about how the mets traveled to where they are, and he said it doesn't matter. This onc didn't know anything about Tarceva. I told Vicente to stop taking it, at least until after radiation.

He said something that made sense: "you are here sitting in a chair talking to me. That's better than more lc patients."

So, we are at home. I gardened, he watered. I told him if he wants, let's empty the out the last of the 401K (not a lot) and do whatever you want. No reply. It's weird, but there is no panic here; just love.

Blessings,

Holly

Reply # - May 9, 2013, 05:45 PM

chebird
Posts: 104

Dr. West,

As I told this doctor today, who wants to retire in the worst way, I don't know how you do this day after day. You people have chosen a field that I have no way to comprehend. I thank God for you.

And what you are doing here - wow.

You take it home with you.

I just pray that God will be gentle.

God bless you all,

Holly

Reply # - May 9, 2013, 10:57 PM

apra
Posts: 142

Holly,

I've been reading your posts. I'm so glad you and Vicente are facing this so bravely. My husband and myself could not bring ourselves to discuss anything remotely like this, that's what I regret so much.

I am so very saddened by the turn of events in Vicente's LC. However it just means a bad bump on the road I pray. LC can surprise us in more ways than one.

As we marry and love the love of our lives, we also know that separation is inevitable for everyone whether it is through LC or some other cause. Be strong and know that He watches over you. He will hold your hands through the dark and through the light.

Nini

Previous PostNext Post