Anyone Had Experience With Neurofibrosarcoma?

[Guest 2dogs4cats]

Hi all, I just wanted to gain some insight into this type of cancer. I think it is somewhat uncommon and having trouble finding much information. I wondered if your pup had other symptoms related to this type of cancer, like loss of appetite, lethargy, etc?

Did you do surgery to remove it? If so, did the tumor come back? In the same place or another part of the body? Did it seem more aggressive the second time around? Did you do another surgery to remove it? Is there another form of treatment besides surgery that works?

 

I am trying to get a handle on if this thing will just keep coming back and what to do about it. Any experiences would be very helpful, although I know each dog is different.

 

Thank you all for reading.

[Sambuca]

My father had a soft tissue fibrosarcoma. Unfortunately that's how he died. Based on my limited experiences with that and from what I've heard about osteosarcoma it seems that most sarcomas are aggressive. Also, the first place it seems to metastasize to is the lungs. Have you had xrays done of the lungs? Good luck and I hope things go well.

[Batmom]

I think one of greytlady94's dogs may have had something similar. You might PM her if she doesn't see this. Sending best wishes for you and your pupper.

[EllenEveBaz]

No knowledge here either, but adding our best wishes.

[JJNg]

Neurofibrosarcomas are in the category of soft tissue sarcomas. These types of tumors in dogs tend to be locally aggressive, but most have a very low chance of metastasis. The higher grade ones can be a little more likely to metastasize, and they can sometimes spread to liver and spleen, so it's a good idea to do an abdominal ultrasound as well as chest x-rays. These tumors usually don't cause systemic signs like lethargy or loss of appetite.

 

If the tumor is in a location where it can be removed completely with wide margins, and there is no evidence of metastasis, then the prognosis is usually very good. The best chance to get it all is with the first surgery, so it is often worth the additional cost of going to a board certified surgeon and possibly having a CT scan done first to help plan margins. If the biopsy report comes back with incomplete or inadequate margins, you can try to do another surgery right away (if possible) to get better margins. Or if another surgery is not possible due to location, soft tissue sarcomas can respond well to radiation therapy (but very expensive).

 

If you know the margins weren't clean, it's usually not recommended to wait until it comes back because it often comes back more quickly and more aggressively each time. If it does come back, it will be in the same location because it will be a recurrence of the same tumor.

 

Have you consulted with a veterinary oncologist?

[Guest greytkidsmom]

No neurofibrosarcoma experience but we do have experience with fibrosarcoma with our 9-year old boy. Like Jing said, locally aggressive, low rate of metastasis. His first surgery did not get clean margins but they got it all out with a second surgery. In my opinion, the key is the right surgeon. The vet oncologist was also very helpful.

 

He is now 4 months postop and doing great. Feel free to PM me if you like.

[Guest 2dogs4cats]

Chance had a surgery this past January and they were pretty certain they got clean margins. I adopted him 2 weeks post-op and I already knew the diagnosis. I was thinking also that if it came back, it would be the same location. He now has another tumor, but in a different location and seems to be more aggressive. He is also lethargic and not eating well, but the bloodwork doesn't show anything off. I also thought that he would not have other symptoms with this kind of cancer, but there doesn't seem to be anything else wrong.

 

At this point, I am trying to get some weight on him and get his energy up, because otherwise I don't think he would be fit for surgery. I am sort of at a loss as to what is causing these symptoms, if it could be the cancer, or if he has another type of cancer. I have seen my normal vet who isn't giving much advice and I am seeing another this weekend for a second opinion.

 

One person told me that there was a similar case where the dog had 3 tumors removed and each time, they would come back, they were more aggressive. I am just not sure what the best course of action is. I have also heard of this Neoplasene, but it seems to get mixed reviews.

 

It's so hard to figure out what the best thing is to do. Thank you for all your support!

[Sambuca]

Get abdominal x rays there could be masses in the belly causing the pup not to eat. With my dad they thought they got clean margins but in under 2 years it was everywhere. He had 5 or more masses in his stomach causing him not to be hungry. I know dogs are different, but there are similarities.

[Batmom]

Whereabouts are you located? Might be worth a consult at UW-Madison if you are close enough.

[MP_the4pack]

My Pearl had fibrosarcoma. Extremely fast growing cancer, 1 cm/day. And it metaticized from spleen to liver.

 

less than a month between diagnosis and Bridge.

 

I hope neurofibrosarcoma is not the same.

[Guest 2dogs4cats]

Sambuca, so sorry about your dad. That must have been so hard for him and you. I probably need to get some x-rays. I will ask the dr tomorrow if he doesn't refer me to someone else.

 

Batmom, I am by Chicago, so not too close to Madison, but I have heard there is a clinic at University of Illinois. Have you been there or do you know if it's any good? What is the reason for these University clinics? Is it because regular vets are not that knowledgeable about cancer?

[Batmom]

I've been to the UW-Madison clinic. Reason for clinic: Teaching hospitals . So, they are training veterinarians as well as doing research.

 

The reasons I suggest are:

 

- Fast appointment.

- Extremely knowledgeable -- often there is no comparison between a regular vet and a university teaching hospital. These people have been there, done that, read the latest research.

- Fast test results. We had our cytology results the same day, before we left the facility.

- Competitive pricing. The work I had done there (and the work I declined -- dog was terminal and I did not need to know more) cost @ 25% - 30% of what I'd've paid at a specialty clinic.

- Kind and compassionate. Everyone I encountered, from the receptionist to the student to the supervising vet, was kind and patient with both me and my dog.

 

Hugs and best luck.

[GeorgeofNE]

My last dog, a non-Grey, had a nerve sheath tumor. I did not elect to have a full biopsy because it was a large (painful!) mass on his side. The vet said they would have to remove it, and large margins, and I could not see where they would ever get skin to close the hole. He was also 12, with SEVERE allergies and arthritis. I did not feel that removing half his side so he could possible live a few months longer was worth it. I was told that in all likelihood, the tumor would just grow back.

 

I ended up having the whole summer with him, and said goodbye on the day he refused to eat.

 

I'll miss him forever, but I do not regret my choice. I believe it's what he would have wanted.

[Guest Fasave]

My boy has had several forms of soft tissue sarcomas. He had a nerve sheath on his back that was removed with clean margins for no further treatment. The other on his leg is more aggressive. He had an initial biopsy/surgery and confirmed diagnosis 4 years ago and then had a follow up surgery with a board certified surgeon. He had clean margins but not as wide as they like but I chose not to follow up with radiation. The cancer came back last year which I had verified through another biopsy when I found small rice size lumps along the incision line from the previous surgery. He was in for another surgery (torn salivary gland) so while he was under I decided to have it checked out. Contact OSU and ask about the FU4 (i think it's called) protocol as an alternative to radiation. I started it with him last December. It is a series of 4 chemo injections directly into the site and the cost is less than 1/4 the cost of radiation and WAY easier on the pup. The problem is that it is hard to find an oncologist to do the procedure as it's relatively new. I know another pup who when through this treatment 3 or 4 years ago and has remained cancer free. My guy had one injection and unrelated to the treatment became very ill so given that he's nearly 12, I chose not to continue this treatment along with everything else he was dealing with. Interestingly, the lump as not yet re-appeared and the surgery/biopsy/chemo was a year ago.

 

So my experience with soft tissue sarcomas is that they can be dangerous but they can also be very treatable and there are more options available than your local vet may know about.

[JJNg]

I am sort of at a loss as to what is causing these symptoms, if it could be the cancer, or if he has another type of cancer. I have seen my normal vet who isn't giving much advice and I am seeing another this weekend for a second opinion.

Has your vet done (or suggested) any tests to see if it's the same type of cancer, such as a fine needle aspirate or biopsy of the new tumor? What about bloodwork to assess his overall health and see if there is anything else going on?

 

One person told me that there was a similar case where the dog had 3 tumors removed and each time, they would come back, they were more aggressive.

A lot of factors could be involved here. Such as what type of tumors, how wide the margins were, was the surgery done by a specialist, and was an oncologist consulted for follow-up treatment recommendations after the tumors were removed?

 

What is the reason for these University clinics? Is it because regular vets are not that knowledgeable about cancer?

Batmom gave some good reasons to consider a vet school teaching hospital, but if it's closer or more convenient, private practice specialty/referral centers can be just as good. And at least in my area, they're not necessarily more expensive than a teaching hospital. Going to a private practice specialist can be more efficient than the vet school, as you deal with the specialist directly, without having to go through the vet student, intern, resident, etc. But all cases at the university teaching hospitals are overseen by the board certified specialist, so you'll still get the best of care.

 

Most 'regular vets' are general practitioners, so they do a little of everything. In some cases, it is beneficial to consult with a specialist for more advanced and current treatment options. Kind of like how you may go to your family doctor for minor problems, but they may refer you to a specialist for more complicated problems. Specialty practices are growing in veterinary medicine, and there are many types of specialists these days (oncology, cardiology, internal medicine, surgery, neurology, opthalmology, dermatology, etc...).

 

Best of luck with your boy, and I hope it's nothing serious.