Update: The Battle is Over

[TyRy]

Hi all,

I was wondering if anyone knows anything about or anyone who has had spindle cell sarcoma? My DMIL was just diagnosed with this rare form of cancer (the doctors are the ones who called it rare.) The tumor is in her heart/lung/sternum area...they are not yet sure what it has attached itself to...we are still waiting to find that out. But the biopsy came back today with the malignant cancer diagnosis. Our family knows nothing about this, but we are hoping for the best, and hoping we'll get this shot again come September:

We are in the Chicago area if anyone has any recommendations for any docs or anything.

Thanks!

 

[Mskanga]

Hi Ty !

I do have to chime in when I hear the word "sarcoma" as it's something not too many people know about.
My daughter who is now 16 was diagnosed with osteogenic sarcoma ( bone cancer like the one that took Ted Kennedy's leg back in the 1980's ).
Fortunately medicine has made great strides and since her diagnosis was made early she did not lose her leg , she got a prosthetic knee and a titanium rod.
I am not sure what they mean "spindle cell" with your DMIL but from what I read on your post I get the impression that they don't really know what they are dealing with.

My daughter's diagnosis was quite challenging but right from the start she was in a sarcoma especialized center but a sample of her biopsy was sent immediately to the mayo clinic for a second opinion , I would strongly suggest to do this if possible or somehow go for a second opinion.

I am sending you some sites that you may want to check out , two of them are sarcoma centers in Chicago , and the others are informational sites.

http://cancercenters.cancer.gov/cancer_centers/ucrc.html

http://cancercenters.cancer.gov/cancer_centers/rhiccc.html

http://www.curesarcoma.org/

http://www.liddyshriversarcomainitiative.org/

I know this is all very scary and overwhealming but the more you know about it , the better. Keeping you in our prayers and I hope this helped.

BTW I forgot to tell you , my daughter has been in remission for 14 months now and going strong.

 

[Pea-n-Me]

I know a little bit about spindle cell tumors because my dog had a form of them. Being a nurse and a cancer survivor myself, I probably read more about them than most people would.

Spindle cell tumors are a form of soft or connective tissue sarcoma that can occur in many areas of the body. They get their name because at the cellular level, they resemble spindles when studied under a microscope. You're right, there is not a huge amount of information out there about them.

What is known is that excision of the tumor(s) is ideal as they are not always predictable (ie some can grow slowly, and others aggressively). So they assume they are aggressive and treat them accordingly. A quick search around the net for information on humans shows that, after removal, they are sometimes treated with radiation and/or chemotherapy (not so for dogs, usually).

The thing about them is, that they can metastasize, ie spread. And metastasis is really how cancer kills. If the area of the tumor can't be excised, sometimes they will do radiation to kill the cells that way (radiation is very precise nowdays). Chemo may be offered to kill any cells that "got away" from the original spot (which will be those that metastasize) and/or shrink the tumor, but that's something that's decided by an oncologist based on information known about the tumor and how agents would work against it; and of course, the patient.

As far as surgery goes, they want to get a very wide surgical margin because these tumors are known to come back (as they did in the case of my dog, even after removal several times. She also eventually developed a brain tumor which was thought to be a mets from the cancer). Wide clean margins gives a better chance that normal cells will grow there, not the cancer cells, which can remain microscopically (but local radiation can also "clean up").

Please be sure to go to the absolute best cancer center in your area. They will know best how to deal with it. You never want to have any regrets about what you should have done, later. Go to the best now. HTH.

 

[Mskanga]

Unfortunately radiation is not very effective with bone cancer but in some cases it is given especially when resection ( surgery ) is not an option. The big issue with any type of sarcoma is the spreading , and it usually spreads to the lungs. That is the reason why the treatment protocol in many cases includes chemotherapy before and after the surgery.
Something that can be also considered is protom beam radiation which is more precise than normal radiation.

 

[Pea-n-Me]

Given its location, it may be a soft tissue sarcoma as opposed to a bone tumor (though it sounds like they need to learn more).

TyRy, here's some more general information on soft tissue sarcomas.

http://www.cancer.gov/cancertopics/factsheet/Sites-Types/soft-tissue-sarcoma

http://www.cancer.gov/cancertopics/types/soft-tissue-sarcoma/

http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_is_sarcoma_38.asp

http://www.nlm.nih.gov/medlineplus/softtissuesarcoma.html

 

[TyRy]

Hi Ty !

I do have to chime in when I hear the word "sarcoma" as it's something not too many people know about.
My daughter who is now 16 was diagnosed with osteogenic sarcoma ( bone cancer like the one that took Ted Kennedy's leg back in the 1980's ).
Fortunately medicine has made great strides and since her diagnosis was made early she did not lose her leg , she got a prosthetic knee and a titanium rod.
I am not sure what they mean "spindle cell" with your DMIL but from what I read on your post I get the impression that they don't really know what they are dealing with.

My daughter's diagnosis was quite challenging but right from the start she was in a sarcoma especialized center but a sample of her biopsy was sent immediately to the mayo clinic for a second opinion , I would strongly suggest to do this if possible or somehow go for a second opinion.

I am sending you some sites that you may want to check out , two of them are sarcoma centers in Chicago , and the others are informational sites.

http://cancercenters.cancer.gov/cancer_centers/ucrc.html

http://cancercenters.cancer.gov/cancer_centers/rhiccc.html

http://www.curesarcoma.org/

http://www.liddyshriversarcomainitiative.org/

I know this is all very scary and overwhealming but the more you know about it , the better. Keeping you in our prayers and I hope this helped.

BTW I forgot to tell you , my daughter has been in remission for 14 months now and going strong.

Hi Mskanga - may I first say what wonderful news about your daughter!! My fingers are crossed for her continued remission.

Thank you for the links and information. We used them and then helped forward the information on to DFIL. The hospital she was at at least acknowledged that they had no experince and while we thought they might have a few suggestions, it seems like the research we did led them to transferring her. It was a wee bit frustrating.

I know a little bit about spindle cell tumors because my dog had a form of them. Being a nurse and a cancer survivor myself, I probably read more about them than most people would.

Spindle cell tumors are a form of soft or connective tissue sarcoma that can occur in many areas of the body. They get their name because at the cellular level, they resemble spindles when studied under a microscope. You're right, there is not a huge amount of information out there about them.

What is known is that excision of the tumor(s) is ideal as they are not always predictable (ie some can grow slowly, and others aggressively). So they assume they are aggressive and treat them accordingly. A quick search around the net for information on humans shows that, after removal, they are sometimes treated with radiation and/or chemotherapy (not so for dogs, usually).

The thing about them is, that they can metastasize, ie spread. And metastasis is really how cancer kills. If the area of the tumor can't be excised, sometimes they will do radiation to kill the cells that way (radiation is very precise nowdays). Chemo may be offered to kill any cells that "got away" from the original spot (which will be those that metastasize) and/or shrink the tumor, but that's something that's decided by an oncologist based on information known about the tumor and how agents would work against it; and of course, the patient.

As far as surgery goes, they want to get a very wide surgical margin because these tumors are known to come back (as they did in the case of my dog, even after removal several times. She also eventually developed a brain tumor which was thought to be a mets from the cancer). Wide clean margins gives a better chance that normal cells will grow there, not the cancer cells, which can remain microscopically (but local radiation can also "clean up").

Please be sure to go to the absolute best cancer center in your area. They will know best how to deal with it. You never want to have any regrets about what you should have done, later. Go to the best now. HTH.

Thanks so much for this Pea-n-Me - we basically copied what you wrote and emailed it to DFIL...I think what you have is as much (if not more) than what we were able to find on the web. Since DMIL is in such good spirits we told her we found much more research on this for dogs than humans. The suggestion was then made to send her to our doggie's vet...she got a good laugh out of that!

I must say we are just a tad concerned because the docs now think the tumor is too big to try and remove surgically at this time since it is pressing on a bunch of vital organs (heart, lungs.) They are going to start her on chemo to shrink it and then go in and get it.

Unfortunately radiation is not very effective with bone cancer but in some cases it is given especially when resection ( surgery ) is not an option. The big issue with any type of sarcoma is the spreading , and it usually spreads to the lungs. That is the reason why the treatment protocol in many cases includes chemotherapy before and after the surgery.
Something that can be also considered is protom beam radiation which is more precise than normal radiation.

Given its location, it may be a soft tissue sarcoma as opposed to a bone tumor (though it sounds like they need to learn more).

Tee hee - you were both kind of right! They do think that it is a soft tissue sarcoma, but we've also found out that due to the "spindle" shape of the cells, that somehow makes them more resistant to radiation. That was something that I'd never heard of. I think that may be why they are starting her with chemo.

TyRy, here's some more general information on soft tissue sarcomas.

http://www.cancer.gov/cancertopics/factsheet/Sites-Types/soft-tissue-sarcoma

http://www.cancer.gov/cancertopics/types/soft-tissue-sarcoma/

http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_is_sarcoma_38.asp

http://www.nlm.nih.gov/medlineplus/softtissuesarcoma.html

Once again Pea-n-Me, thank you! We visited each of these and were able to compile stuff for DFIL that he share with DMIL's docs at the original hospital.

Update time - Thanks to a lot of the info you all gave, and listening to some friends that have gone through this unfortunate experience, DMIL is now at the University of Chicago Medical Center. She was transferred late yesterday, and has already seen a bunch of different doctors in different areas today. They also have one on staff that specializes in Sarcomas, so at this point we think she is in good hands. They will run their own biopsy on the slides sent from CDH and also rerun her cat scan and echocardiogram.

You are the best - thank you for helping my family with all your information and good wishes... a big for all of you!

 

[Mskanga]

Ty , I am glad that she was transfered to UCMC , and I am even more glad that she is being treated in a place by a sarcoma especialist and that they are doing their own diagnosis , this way they will know exactly what they are dealing with and follow the proper treatment.
The scans and echo are usually used for baseline and then they re-do them as the treatment goes along to see the progress of the treatment.
Best of luck to you and let me know if I may be able to help again.

 

[TyRy]

Thank you all again for all the information and thoughts. We finally have a path forward. First, after sending the slides to the Mayo Clinic they changed the type to Synovial Sarcoma. While still rare, there seems to be a lot more information out there on it. They will operate on Friday, as they want to get the tumor out, but they also know it has pentrated the heart. The unknown it just how far and deep in a couple of places, so it will be open heart and possibly rebuilding of part of it. The wildcard is how much/deep it is in the right ventricle (I think that's correct) as they cannot rebuild/fix that.

Thanks again everyone!

 

[Pea-n-Me]

 

[luvmarypoppins]

Sending thoughts and prayers for your mil.

 

[mommasita]

I will keep our MIL and your family in my daily prayers.

 

[frdeb1999]

Thoughts and prayers for your MIL.

 

[Flossbolna]

I am so sorry to hear about your MIL's illness. She sounded like such a wonderful person on your trip report! I am sending thoughts and prayers for her!

 

[Mskanga]

One day at a time Ty.....and the good thing is that they can take it out.

 

[TyRy]

Thank you all so much for your prayers and thoughts, they really do help!! SO DMIL had the surgery today, while it wasn't horrible, it was kind of a bad case scenario as expected.

They were able to get about 75% of the tumor which was much larger than they thought. The cardiac doctor doesn't think it has metastiszed. The bad news (which we expected) is that it has grown into (or maybe from) the heart...the right atrium and right ventricle. Also because the tumor was so mushy (yes, my language) they could not put her on a bypass machine and get more out of the atrium and rebuild it. It would have caused too much bleeding. It's the right vetricle that causes the main concern because they really can't do anything with that unless they do a whole heart transplant. So now we wait till early next week and her oncologist will map out the new path forward. Best case now is that the chemo and/or radiation will finish the job.

The surgeon did say the amount of tumor that is left is not really doing any damage to her heart, so she can resume doing whatever she wants and feels up to doing...while I know she will love to hear.

Thank you all so much again and I'll keep everyone updated...you guys are the best and my family really appreciates it.

 

[mommasita]

Glad to hear that surgery is over. Sadly, there always has to be some bad news. Good news on the fact that they don't think it has metastiszed.
I will be hoping and praying for the best for her now.

 

[Flossbolna]

Good to hear that the surgery is over! I wish you and your family all the strength you need to get through the next steps to make your MIL healthy again!

 

[Pea-n-Me]

Am keeping MIL in my prayers.

As a cardiac nurse, I've seen many cardiac tumors over the years. They're rare, but just to let you know, she's not alone.

 

[minniebeth]

Hugs to you and your family and your DMIL and all of you are in my prayers...

 

[ERICS MUM]

I rarely post on this forum but having read this thread I have been moved by the kindness of "strangers" in giving practical information and emotional support to TyRy. It restores my faith in the goodness of human nature.

Thank you for a very up-lifting thread, although of course I am sad that the thread ( and this forum as a while) has to exist.


Linda