Jolie's mother from California - Dx Oct 2013

[Amanda]

OMG YAY!!!!!! xox!!!

Try and make sure during radiation they do NOT hit the bone if possible!
I am soooo happy!

[Ivan]

Congratulations! If negative margins, I would decline radiation.

PET-CT is a waste of time. I had a PET-CT recently when I had known tumors of 1cm, and they didn't show. Please read this - http://www.cureasps.org/forum/viewtopic.php?f=4&t=819 I'd add a periodic MRI for the primary site, at least initially.

[Olga]

Jolie, thanks for an update. What is the reason they recommend the radiation treatment after the primary resection? Local recurrence is rare in ASPS if the resection is done with the clean margins even if the margins are small. ASPS is usually well encapsulated tumor, and it is also fairly radio-resistant. In my son's case he had to radiation and no problems locally. Adding irradiation to the primary tumor treatment does not prevent from the future distant metastases. The damages from the radiation might be very significant and the recovery might be very impaired.
We recently discussed this subject here:
http://www.cureasps.org/forum/viewtopic.php?f=4&t=822

[jenhy168]

Hi Jolie,

I had my primary tumor removed from my upper left thigh..i think it was about 3 inches in diameter...and had radiation treatment to my leg for 4 weeks. The radiation to the leg was painless and my leg function isn't impaired at all due to the radiation.

I'm not sure how much the radiation treatment really helped or didn't help, but just wanted to let you know my experience. All I know is that there has been no local recurrence to the primary site since my surgery and radiation treatment back in early 2009.

My oncologist is at UCLA, but my orthopedic surgeon was from USC, who performed the primary tumor resection and recommended the radiation.

I'm sure Olga knows more than me, but just wanted to share...

Hope all else is well~

[JolieS]

Hi all,

Thanks for all the feedback. Her surgeon at UCLA wants to do radiation to make sure all of the cells in the area are dead... I'm sure to prevent any tumor from growing back in the same place. I will ask tomorrow exactly why and bring up what you have told me about it may not being necessary as well as avoiding the bone.

Ivan, I was under the impression that the PET-CT scan was the most advanced technology for scans. If she has any mets elsewhere, wouldn't they show up in her full body PET-CT scan? Should we be asking for just a CT scan as well as MRI?

Thanks again you guys are very knowledgable and helpful.

Jolie

[JolieS]

Also, Ivan - if it is rare for the tumor to grow back to the primary spot, why would she need an MRI of the primary spot?


I just want to be ready with all of my questions tomorrow. I live in nyc while my mom lives out in LA, I'm only here for the week to help my mom out so this is my chance to ask the doc all the questions!

Thanks !
Jolie

[Olga]

1. Radiation therapy or not.
It is not like Olga knows the best, but rather there should be a proof that radiation given after the resection with the negative margins in ASPS increases the overall survival and the reduces the rate of the distant metastasis - which is the main cause of death in ASPS patients, not the local recurrence - that can be redone if it happens.
To get familiar with the controversy and a current status of evidence (or rather lack of it) read the following report
Appropriate Surgical Margins and Proper Handling of Soft Tissue Sarcoma of the Extremities
11-10 EBS: September 2012
Status: CURRENT
https://www.cancercare.on.ca/toolbox/qu ... rcoma-ebs/
"discuss the benefits and risks of accepting a very close margin that may even be
microscopically positive and the importance of preoperative or postoperative RT.
Local recurrences have been observed even when negative margins are achieved with surgery
and with surgery and radiation, suggesting that tumour characteristics other than margin
status are important. Further study is required."
Some of our patients get the radiation therapy, some do not. Radiation treatment always has long term damaging consequences even if they are not felt immediately
2. PET/CT every 3 months or not.
Follow up guidelines might be found here:
http://www.nccn.org/professionals/physi ... arcoma.pdf
there is no full body PET/CT recommended for any sarcoma, it is even less useful for ASPS.
The full body PET/CT means a fairly high radiation dose for the patient but no benefit versus plain CT as ASPS is a slow growing tumor and the metastases have to be fairly big to be lit on the PET scan - the size that would be found by the CT alone. May be once a year PET/CT would have some advantage. In our own experience even obvious mets less than 10 mm would not lit up on the PET scan.
None of our patients get PET/CT every 3 months.

[Amanda]

I agree with Olga an Ivan btw...
The radiation is not great an i had 33 treatments! I have problems now an pain in my calf from it! It is so bad at times i am on pain meds

Radiation is the gift that keeps giving for life...

I would talk this over deeply before doing it!

I have said a few times i wish i would not have gotten it an listened to Olga about it! ... But, i did it so there we go lol

I hope you all make a very well thought out decision an send hugs!

[Bonni Hess]

Dear Jolie,
I am so sorry for your mother's ASPS diagnosis, but am grateful that her primary tumor has now been successfully resected. I am grateful too that she has your special help and faithful support, and that you have reached out to the ASPS Community members on this Board for information, input, advice, and support. Our daughter Brittany had post-op radiation to her left thigh twelve+ years ago following resection with good margins of her large primary tumor in her left thigh, and thankfully has never had any tumor reoccurrence to that area. However, she has heartbreakingly had extensive and widely disseminated metastasis to many other areas of her body so unfortunately the radiation to her thigh definitely did not prevent disease progression and metastasis. I strongly agree with everyone regarding the ineffectiveness of PET-CT scans for monitoring ASPS and finding tumors at the smallest most treatable size, and encourage you and your mother to request chest/abdominal/pelvic CT scans every 3-6 months instead as well as an annual brain MRI and annual full body bone scan. PET scans are unreliable because they can have false negative or false positive results, and I am perplexed as to why some oncologists continue to use them for monitoring ASPS. Please know that your mother and you are not alone in this difficult battle, and that those of us on this Board are here to try to help with critically important shared researched and anecdotal treatment information and strengthening support and encouragement. Please give your mother and yourself special hugs from me, know that I am holding both of you and your family very close in my heart and caring thoughts, and keep in touch with the Board as you are able.
With special caring, healing wishes for your dear mother, and continued Hope,
Bonni Hess, mother of now 31 year old Brittany diagnosed with ASPS at age 19 in July 2001

[JolieS]

Hi Olga, Bonni and Amanda,

Thanks for your messages. I will definitely ask why the doctor wants to go forward with radiation therapy and discuss it with my Mom. I am frustrated to find out that the PET-CT scan is not as precise as just a CT scan. I will ask the doctor to order the chest/abdominal/pelvic CT scans. So the PET-CT scan is more of a PET scan than a CT scan? I thought it combined both types, which would allow the doctors to see any small mets.

Are there any other questions or concerns I should bring up with the doctor tomorrow? We are going in for them to remove the drain from her wound and I will bombard him with these concerns!
Thanks again for all of your support.
Jolie

[Bonni Hess]

Hello again Jolie,
From what I have read in your posts it appears that your mom has not yet had a brain MRI. I strongly encourage you to request/insist on one for her when you meet with her oncologist tomorrow. I don't know if the full body PET-CT included the brain, but even if it did, even regular brain CT's are not adequate to diagnose ASPS brain mets at their smallest most treatable size. Based on the results of the full body PET-CT which showed no other tumors, I assume that no lung mets were found, so it would be unusual for there to be brain mets at this time in the absence of lung or other mets, but as we have told you, PET-CT scans can unfortunately provide false negatives and erroneously miss small tumors. PET scans simply show sugar uptake which might indicate possible tumor activity, but not always. I Hope that the removal of the drain from her incision goes well. It can usually be done very quickly with not much pain. Take care and know that continued caring thoughts and best wishes are with your mother, you, and your family.
With special caring, healing wishes, and continued Hope,
Bonni

[D.ap]

Hi Jolie

Also I wanted to remind you how incredibly rare this sarcoma is compared to the total number of cancers out there.
So sarcomas, as I understand it, make up 1% of cancers and ASPS is only 1% of the sarcomas.

Side story--Josh, our son with ASPS, had just found out the tumor was ASPS.On our way home, from the appointment,in silence we stopped at a filling station. Upon pulling up to the filling station to get gas from the said appointment he runs into the filling station and appears back at the car with a lottery ticket. We all look at him as he jumps back into the car with the lottery ticket with puzzeled looks. He looks at his wife and smiles then says that with the odds of getting ASPS he had the same possible"luck" with winning with that lottery ticket.

On another note, when choosing a doctor , you need to find a person that is working for you all and wants to research and do what's best for you all.

You, guys need to be starting a file with CT scans and MRI scans--both the discs and the written reports.
Keep a calendar so you can remember when to perform the scans as this disease needs to be a life long commitment of scans and discovering the tumors when they are at their smallest

When the group encourages certain scans and procedures they are talking from experience and are trying to keep your mom from too much scan radiation and exposure. I am sure you understand that precaution
The rest of her life will be filled with scans etc.

Hope I didn't overwhelm you because that isn't my intention.
Until tomorrow, continue to revel in the progress you have made thus far.

Good job to you all!
Love
Debbie

[D.ap]

PS You guys need to get a copy of the pathology report. It will tell you everything you need to know about the findings and surgery and if you like you can ask questions to us or your doctor. I assume the surgeon is not your primary doctor so you may need to call the surgeons office but it should be at your doctor you will be seeing
Take care

Debbie

[JolieS]

Hi there

She has not had a brain MRI, the PET-CT scan also included her brain. No mets showed up on the scan thankfully. I am keeping positive thoughts that chest, abdominal and pelvic CT scans will show the same results. I will also ask the doctor to order a brain MRI... I do not expect them to find any brain mets but I understand having a clear brain scan will be helpful going forward. I'll also ask for a copy of the pathology report. This won't be ready until Thursday, so we will have to wait until then to find out if there were clear margins.

Thanks again for all the advice. Please let me know if there's anything else to ask about!

Jolie

[Bonni Hess]

Hi Jolie,
Debbie made an excellent point about the crtitical importance of requesting and obtaining copies of all radiology reports. Additionally, you should request a CD copy of all of the scans for your personal records, and request to visually review the PET-CT with the oncologist tomorrow so that you know what the scans look like. We always personally look at and discuss Brittany's scans with her oncologists as we want to be as knowledgeable as possible about every aspect of her disease. Doctors and radiologists unfortunately can and do make mistakes and miss new tumors as inexcusably happened with Brittany's large spinal met the consequences of which have been devastating and chronically debilitating for Brittany. It is essential to be as pro-active, knowledgeable, and well informed as possible in fighting this very challenging disease. Take care and have a positive and informative appointment with the oncologist tomorrow.
With special caring thoughts, healing wishes for your dear mother, and continued Hope,
Bonni