Are there any other young children out there?

General Pediatric Patients
1

Hi, there. I'm new to the group. Our son was diagnosed with SS in 2011 when he was 7. Docs thought it was a benign but painful lump (can't remember if it was 10 or 15 mm long and not very thick) in his upper left back of his arm, above his elbow. We asked them to remove it. It took a total of 3 surgeries to have clear margins. During scans they also spotted a tiny nodule in his lung, so the third arm surgery was combined with lung to remove that. That nodule was totally different, and in the end they decided it was a benign thing (at first they thought it was pulmonary carcinoma, which would have been completely unbelievable, as there are no risk factors for him for that). Talk about a roller coaster. About one year later, his SS recurred in his arm, and a 5 mm tumor was just removed a couple weeks ago. Now they are discussing treatment options. Our doctors seemed to think that chemo and rad were not indicated last time, but now they are exploring all options, including discussing amputation. Lots of second opinions are being sought from all over. Thank goodness they are taking care of this for me. What a great team we've had at Kaiser here in Sacramento, CA! His first ever PET scan is tomorrow (CT, MRI, and bone scans are all he's done in the past).

So, I have a few questions for the group...

1) How many young children do we have out there in the group? I'd love to hear your stories.

2) Did any of you, regardless of age, have small tumors like Tristan's and if so, what has been the treatment plan? Have they discussed amputation, too? It would be just about his whole arm, I think. Luckily he is right handed, but that's a pretty scary thing to contemplate for an 8 year old. So is the possibility of mets, of course.

3) And this one is just a curiosity thing for me, sort of an informal survey...anyone with SS out there also have cervical ribs? Our son has two fully formed cervical ribs (it's a genetic thing). I was reading an article which was proposing a link between early childhood cancers and cervical ribs and the Hox genes which inhibit that abnormality. So I was just curious on that one, because we have no family history of childhood cancer, and really very little cancer in our extended family at all.

Thanks for your input! I've been compiling data for our oncology team, as I know they don't have time to do this kind of research. I'd like to be as fully informed as possible and even have some input into the treatment plan besides just being a parent. It's all I can do, besides continuing to be positive! :-)

2

Paula-

My son, Ian, was diagnosed with Synovial Sarcoma just over two years ago when he was 4 years old. He is just over a year post-treatment now and has been clear on all of his scans.

I'll summarize his treatment here but feel free to contact me directly as well. I can be reached via email on ■■■■■■■■■■■■■■■■■■■■■■■■■■ or on here.

In April of 2010, we discovered a golf-ball sized lump in Ian's groin, shortly before his 4th birthday. After some initial treatment with antibiotics (meant to treat it as a possible infected lymph node), surgery was scheduled. The lump was found to be a solid mass and, in early May, he was diagnosed with Synovial Sarcoma by Memorial Sloan Kettering, where he received most of his treatment. His oncologist there, Dr. Meyers, made the bulk of our treatment decisions including our ongoing care out of the area (we live in Iowa). His tumor was quite large (I think almost 5 cm--I can't believe I can't remember now!?).

His initial scans in May showed some polyps in his lungs that, while not definitive, were feared to be cancerous. He did not have any procedure to excise them. They have not appeared on any scans since the start of his chemotherapy.


Ian underwent several rounds of chemo (Doxorubicin/ifosfamide) followed by surgery to remove his tumor in September. Amputation was never discussed, although his tumor was not in an area where this was even possible. The surgery was considered a success, albeit with very small margins. Following surgery, he received radiation to his tumor site, and completed his chemotherapy in early December of that same year.


The oncology and radiation oncology team at Sloan also suggested that we also have Ian undergo radiation to his chest. This was in part because of the polyps that showed on his scans and due to the risk of spread to the lungs. This is not a standard protocol for SS but we determined it was a good course of action. (I can provide more details on this but it's a complicated decision point).


We sought out opinions from a number of cancer centers in addition to Sloan--St. Judes, Dana Farber and our local hospital (University of Iowa). I'd strongly suggest doing the same, particularly since SS in younger children is very rare. I can provide names of the people we spoke with at each if you like.

I wish you all the best--please let me know if I can help in any way.

Brian (Ian's father)

3

Indeed there seems to be a high incidence of cervical ribs in soft tissue sarcoma:

http://www.ncbi.nlm.nih.gov/pubmed/1628671

It's odd that they are discussing amputation after the surgery rather than before. Did you get to read the pathology report? How much margin did they get?

It's also odd that such a small tumor recurred. Why did they need so many surgeries to get clear margins the first time around? Was the tumor close to a major nerve?

Is the medical team specialized in sarcoma?

4

I am not young, but I had my foot amputated do to SS in July of 2009. Six month later it mastastized to my lungs. Had numerous chemo treatments. Even had lung surgery in 2011. I’m currently taking Votrient which is really for kidney cancer. Had been keeping the tumors from growing, but this last visit they grew 70%. We were told chemo would stop working at some point. Not sure what our next option will be. Dr talked as though there weren’t other options.

What cancer center are you using? And maybe second opinion would be good before amputation. Prayer will be sent your way.

Wanda in Mississippi

5

Paula -

I do not have any children that have gone through SS, but I have. Except I was 25 when I noticed my tumor. The tumor was also on my left arm but it was on the front side and also right below the elbow. The size of my tumor was like a golfball.

I had about six months of chemo (adriamiacine (spelling?)/ifosamide), then I had surgery to remove the tumor. After the surgery I also had radiation. My cancer went into remission for almost thirteen years. In 2008 they found the cancer in my lymph nodes - the ones on my left under arm. I had surgery and they removed all my lymph nodes and I had about a month of chemo and two months of radiation.

Last year they found a tumor on my humerous (left upper arm bone) It was already eating at my bone. I had surgery to remove it and I have metal plates in my left arm now. I am currently on Pazopanib. I am also being monitored for small spots on my Lungs.

Bottom line is there has to be other options other than amputation. Get second opinions...go to other hospitals.

Stay strong and informed!

God Bless,

Elizabeth

6

Hey there, everyone! Amputation was the suggestion of just one of the doctors on the tumor board, and is only one of the things they are considering. I was surprised they were even considering it at this point, since the tumors were both so tiny. Last year, the initial surgery was performed by the head of orthopedics because they thought it was benign and he had taken an interest in our case. The following two surgeries were also performed by him, but he has no oncology experience. He didn't get adequate margins the second surgery. The third surgery an oncology surgeon was present, but he was working on Tristan's lung. That third surgery had good margins, but either there were microscopic cells left or it just regrew in that spot.

We are at Kaiser, Roseville, near Sacramento CA. We have had our area tumor board, UCSF children's, Stanford, Mayo Clinic, and I think one or two other opinions in the past, and they are also adding St. Jude's to the mix this time. It will take a few weeks to get all of the second opinions back. I am guessing we'll be doing radiation just to be safe, and maybe chemo. I don't know. I would have thought that if surgery were suggested, it would be to remove his triceps muscle entirely, rather than performing an amputation. We will be discussing all of our options, of course, when the PET scan, MRI, and all the second opinions come back.

Thanks so much for your input so far! It is great to hear from others who are going/have gone through this!

7

Thanks so much, Brian! I'm sure I will have questions at some point, and will be in touch. I'm so glad to hear Ian is doing well!

--Paula


Brian McGrath (father of Ian) said:

Paula-

My son, Ian, was diagnosed with Synovial Sarcoma just over two years ago when he was 4 years old. He is just over a year post-treatment now and has been clear on all of his scans.

I'll summarize his treatment here but feel free to contact me directly as well. I can be reached via email on brianmarkmcgrath@gmail.com or on here.

In April of 2010, we discovered a golf-ball sized lump in Ian's groin, shortly before his 4th birthday. After some initial treatment with antibiotics (meant to treat it as a possible infected lymph node), surgery was scheduled. The lump was found to be a solid mass and, in early May, he was diagnosed with Synovial Sarcoma by Memorial Sloan Kettering, where he received most of his treatment. His oncologist there, Dr. Meyers, made the bulk of our treatment decisions including our ongoing care out of the area (we live in Iowa). His tumor was quite large (I think almost 5 cm--I can't believe I can't remember now!?).

His initial scans in May showed some polyps in his lungs that, while not definitive, were feared to be cancerous. He did not have any procedure to excise them. They have not appeared on any scans since the start of his chemotherapy.


Ian underwent several rounds of chemo (Doxorubicin/ifosfamide) followed by surgery to remove his tumor in September. Amputation was never discussed, although his tumor was not in an area where this was even possible. The surgery was considered a success, albeit with very small margins. Following surgery, he received radiation to his tumor site, and completed his chemotherapy in early December of that same year.


The oncology and radiation oncology team at Sloan also suggested that we also have Ian undergo radiation to his chest. This was in part because of the polyps that showed on his scans and due to the risk of spread to the lungs. This is not a standard protocol for SS but we determined it was a good course of action. (I can provide more details on this but it's a complicated decision point).


We sought out opinions from a number of cancer centers in addition to Sloan--St. Judes, Dana Farber and our local hospital (University of Iowa). I'd strongly suggest doing the same, particularly since SS in younger children is very rare. I can provide names of the people we spoke with at each if you like.

I wish you all the best--please let me know if I can help in any way.

Brian (Ian's father)

8

Yaaaay! Tristan's PET scan from this morning was negative. That's some much needed good news!

--Paula

1 Like
9

WONDERFUL!!!! GOD BLESS!!

10

Hi Paula, I am sorry that you have to be here but I am glad you found this site and I hope it helps. My son Kieren was diagnosed in 2010 when he was 9 (he is now 11). His story was similar to Tristan's in that he had a painful lump near his left elbow (just below) which was watched by doctors for a long time (thought it was benign) before they did a biopsy in Aug 2010. He was diagnosed with nerve pain and treated for that before his biopsy - during his surgery they also put in a nerve block & left it in for 5 days to hopefully stop the pain - and he has been pain-free since.

Because his tumor was so near the bone he had 5 weeks of radiation (Nov/Dec 2010) before surgery to remove the tumor, his surgery was in Feb 2011. The doctors at BC Children's hospital and at BC Cancer Agency were very open when discussing options - and they were very concerned in my son's case that surgery without radiation would spread SS and also clean margins would have been impossible due to where the tumor was (very close to bone). They also told us that radiation after was an option, but before would be at a lower dose and target a smaller area. Amputation was mentioned, but it was decided radiation before surgery was the best option. We read a lot of literature before then and since, and also his case was reviewed before radiation by the BC sarcoma team, at Sick Kids in Toronto & by a group in Tennessee. Based on all I know having a sarcoma team involved is key. Dr. Strahlendorf & Dr Goddard (at BCCH) are the oncologists involved, and Dr. Goddard is also part of the BC sarcoma team with our surgeon Dr. Paul Clarkson (from BCCA), and they are all amazing folks. If they need more names to consult with since it is a similar case just let me know.

They have been monitoring our son's elbow with mri and his lungs with CT, so far both are clean. A question I have is how often are scans occurring for any other child SS survivors out there? Since this is so rare in kids they have told us there is not a protocol - and they do not want to increase the risk by scanning too often - but they also don't want to miss anything by waiting too long...

I did not find this site until after Kieren's treatment, and I do find that reading everyone's stories is very powerful and useful when considering options. I have also found that there are many common themes here, I have heard more than just us mention a 'painful lump' - in my son's case doctor's said the pain is not related to the cancer - but I wonder.

I am glad that his PET scan was clean! Congrats. I know that PET is not conclusive, but our son had it done before any treatment and it highlighted the arm tumor and nothing else.

I wish I could do more for you. I have thought a lot about what we would do if it returned in our son's arm, but every case is individual so until you are there you just don't know. I do know however that whatever decision you make it will be the right one, and you need to know that too.

I am sending lots of love & positive energy your way - we are all thinking of you here and wishing Tristan all the best. Please let me know if there is anything I can do.

1 Like
11

Regarding your question on scans, here is a discussion from a bit earlier this year.

http://forum.synovialsarcomasurvivors.org/profiles/blogs/imaging-schedule-ct-scans?xg_source=activity

12

Thank you so very very much for all the wonderful information and for sending love and positive energy our way. It is fantastic having everyone here as support, sounding boards, and resources! In my totally unqualified by medical education opinion, I am leaning toward radiation being a must for sure, but what do I know? They will have to talk with us a lot before I am convinced chemo and further surgery are necessary. I just don't want to jump to make a life changing decision without all the information we can obtain. On the other hand, I don't want to drag my feet over such a decision and have it come back with mets, you know? Sigh.

Oh, and the painful lump thing seems to be very common with SS, I think. I do remember one of the surgeons saying that the pain probably meant it was a neuroma or something, so benign, because cancerous tumors usually aren't painful like that. Interesting, huh? And this new recurrence? It was painful too. We had to really push on it to find that tiny lump, but it was painful.

Anyway, thanks so much!!! I'll be sure to contact you if I have any questions!


BB said:

Hi Paula, I am sorry that you have to be here but I am glad you found this site and I hope it helps. My son Kieren was diagnosed in 2010 when he was 9 (he is now 11). His story was similar to Tristan's in that he had a painful lump near his left elbow (just below) which was watched by doctors for a long time (thought it was benign) before they did a biopsy in Aug 2010....

13

A synovial sarcoma tumor may or may not be painful. It really depends on the location and what structures are involved. One can't tell from pain whether a tumor is cancerous. The surgeon should have done a biopsy. He made a big mistake jumping to conclusion but this is a common mistake. Most physicians see only one or two cases of sarcoma in their entire career and they commonly misdiagnose their first case...

14

I was 13 when I was diagnosed.

15

Meant to say earlier yes thanks for the reminder, I do recall this. Our at the last appt still say that a chest CT is important to not miss it in the lungs, but the question is how often given the risk as your comments suggest. My son has had one yearly.

I guess we are hoping for folks to still share the follow-up plan with respect to scan schedule especially for kids. The more info we all have when discussing with doctors the better!


Brian McGrath (father of Ian) said:

Regarding your question on scans, here is a discussion from a bit earlier this year.

http://forum.synovialsarcomasurvivors.org/profiles/blogs/imaging-sche...

16

Yes, and we, too, are concerned about the risks associated with these scans. I think we may be restarting our every 3 month scan cycle due to the recurrance. We were going to be moving to every 6 months soon, but I think we’re back to square 1. I would hate to have our son develop something like thyroid cancer from all the exposure to radiation. We thought we were going to be able to alternate chest x-rays with CT every other time now too, but I have a feeling we’re in for more CT’s. And now that they want a more in depth MRI on his arm, putting him in this very uncomfortable position for well over an hour (took 2 hours this last time), we have just started having to sedate him for the MRI. I wouldn’t be able to hold the position they have him in for that long either. But there are risks with sedation that I don’t like at all. He has been such a trooper with everything. Any data or input we can get from other young patients is appreciated!

-Paula

17

Hey, there, everyone! Thought I'd throw out an update. Looks like all of the advice our oncology team is receiving is for radiation treatment for Tristan's arm, and we met for the first time with our radiation oncology physician today, so he could explain the process and answer any questions we had. We have one more second opinion appointment scheduled next Wed with UCSF, and we are expecting that they will also vote for radiation. They will also take a second look at the tissue that was removed this time, so it's nice to have another opinion. It looks like they are going with around 30 rounds of radiation, once a day, Monday through Friday, for about 6 weeks. And the area will be around 5 cm beyond the edges of his scar area above it, and down to the elbow joint below it. Does this sound about consistent with the radiation treatment others on here have received?

18

Yes that does. My son's radiation was before surgery, went for 5 weeks, and encompassed the area around tumor & previous surgery. Treatment schedule was as you describe. At the time we did a lot of research as he may have required post-op radiation as well. The main differences we were told between pre & post radiation is the dose & field to cover, and it is something rad oncs really think about especially with children. My son's target area was his arm above & below his elbow. There were a few papers we read on pediatric radiation for SS, I have one here I will load and I will dig out the other and see if there is something more recent. We also looked at a study in Canada that had compared pre & post and found both were quite effective. Do you how soon it will start after that next appt?

Tristan sounds like he has been so brave through all of this, but this will be another challenge. Remember we are here if you need to talk!

Another point I keep meaning to throw out to all, we also have always gotten copies of all the reports & our son's medical records - I fill out the forms to get updates every year so we have a copy of it all ourselves in a huge file. One of the first doctors recommended that as having a complete record down the road is important.

80-RadTherapy_SynSarc_PedPaper01.pdf (45.3 KB)
19

That's a great article. I am forwarding it to our oncology team and our radiation oncology doctor. Very helpful!

Tristan's CT scan to set up the scan area, etc., is two days after next week's second opinion appointment with UCSF. Then he said it takes about a week to set up and complete the plan, which puts us at a Friday, and then he begins his treatment the following Monday. Based on the article you downloaded, this is a long delay post surgery (almost 3 months I think), but understandable as we didn't know what we were going to do. Our pediatric oncology team was not convinced radiation therapy is effective in SS cases, so didn't want to jump to do it on a child.

Thank you so much for the information and support!!!

20

Hi, everyone! I haven't gotten around to updating you all. Tristan embarked on his chemo treatment about two weeks ago. We opted for port instead of broviac, and I am very glad we made that decision. We knew from past surgeries that Tristan is sensitive to chlorhexidine cleaning solution that they use pre-op. Apparently, he's also sensitive to adhesives and the combination makes his rash worse. So our surgeon, who is well aware of his chlorhexidine sensitivity, but who seemed skeptical that it was the true culprit, decided to use the clear chlorhexidine, thinking the dye in the other is the problem. Well, the rash was held off for a couple of days this time, but it did show up, all over the front of Tristan's torso, and much worse under the foam tape they had holding his line down. After a very painful tape removal, which involved a bit of skin loss, I would say that this was the most painful part of the process this time around. Poor kid! I guess if we had opted for the broviac, he would have had to deal with a lot of tape holding tubes down. Yay for that decision, because his incision is healing great, and he has already gone swimming!

The poor guy had trouble with nausea after surgery this time, which we've never had before. He was throwing up all night until we finally got a handle on it. Not a great way to start chemo, which we started in the middle of the night. Ifo/doxo, so we were in the hospital for that. He did pretty well during the treatment, but battled quite a bit of nausea through the latter part, and for a whole day and night after the treatment, so we didn't leave the hospital until about a day and a half after chemo was done. We're going to have to stay on top of his anti-nausea meds better.

Tristan's blood count was very low earlier this week, and he's back to doing great, as confirmed by yesterday's blood counts. Just a couple more neupogen injections. For a kid who doesn't mind injections, those have been troublesome. It stings! We now ice the area for a while, and I let it come more to room temperature, so now it's not too bad. Brave boy!

We have a nice weekend with our friends planned. Tristan is back to playing and eating normally, and is having a great time during this rest period. Next round of chemo is in a little over a week. I understand that we won't skate through it as easily this time, but he's a strong resilient boy, and he's very positive. Everyone is so supportive and helpful, including you all! I hope you all have a great weekend!