Jolie's mother from California - Dx Oct 2013

[D.ap]

Jolie and family
Good news on clear margins
Listen carefully to the pros and cons of radiation
The likely hood of the asps accruing again with the size and place on Joshua's leg was I believe 15 percent
However the likely hood of developing cancer from the radiation treatments and other complications out weighed the benefits of getting radiation .
You guys had a much larger tumor and it was more invasive so the likely hood of coming back may be greater. I don't know

Great news though
Thanks for sharing

Take care and update when you can
Love
Debbie

[Ivan]

In her situation, I would not get radiation treatment. The ASPS primary is not very aggressive, and considering that the entirety or the muscle was removed with clear margins, I think that local recurrence is unlikely. Of course the decision is better left to the patient and doctor. I would suggest she challenge the doctor to produce any study which demonstrates better survival rates with radiation vs without - with clear margins.

[Bonni Hess]

Dear Jolie,
Thank you for sharing the very good news about your mother's clear margins from her primary tumor resection. The question regarding whether or not to proceed with radiation to the primary tumor site is a difficult one, but I personally tend to agree with everyone's cautionary statements about the risks verus benefits issue since our personal experience with Brittany was that the six weeks of post-op radiation with its associated very painful burning, peeling, and discoloration of her skin heartbreakingly did not prevent eventual extensive metastasis to widely disseminated areas of her body. However, she has thus far thankfully not had any tumor reoccurence in her thigh at the primary tumor site, so it is difficult to assess whether this is the result of the radiation or if the clear margins achieved with her surgery prevented any tumor reoccurence. I think that it is very important for you and your mother to request verifiable data supporting the use of post-op radiation prior to making your radiation decision.
On another issue, has your mother's oncologist requested and scheduled a brain MRI for her yet? Although the full body PET scan thankfully did not show any brain tumor activity, it is not adequate to properly diagnose ASPS brain mets at their smallest most treatable size so it is important to have an initial brain MRI, and then one once a year if no mets are found.
Take care Jolie and please keep the Board updated on the radiation decision when you are able.
With special caring thoughts, healing wishes for your mother, and continued Hope,
Bonni

[D.ap]

Jolie and family

Hope this day finds your mom feeling better

Wishing you all a Happy New Year 2014
Reminding you of scans

'He plan is to have full body PET-CT scans every 3 months for the first 18 months, then every 6 months for 2 years...'

Love
Debbie and family

[JolieS]

Hi Debbie- thanks for the well wishes. I hope you and your family had a wonderful holiday and a very happy new year.

Quick update:
After meeting with her oncologist (Dr. Chmielowski at UCLA) my mom decided to go forward with the radiation treatment. She's on her 3rd week of 7 (35 total treatments). Her radiologist is confident they will be able to avoid hitting her bone. She has very fare skin, so she's experiencing pain from the treatment, but nothing too bad. She is scheduled to have a brain MRI this month and a chest CT in 6 months.

Wishing everyone a happy, healthy and joyous 2014!
Jolie

[D.ap]

Jolie

Glad to hear of the brain scan happening and CT scan as well
Thanks for the update

Love
Debbie

[D.ap]

Ps
I hope your mom is healing with leaps and bounds!

[Bonni Hess]

Dear Jolie,
Thank you for your thoughtful update. I Hope that this finds your mother and your family having enjoyed a beautiful holiday season. I Hope too that your mother's radiation treatments go well and that she is able to tolerate them well with minimal radiation caused painful burning and peeling of the skin and fatigue. Based on Brittany's primary tumor site radiation experience twelve and a half years ago, your mother will probably have dark discoloration of the skin surrounding the radiation site, but it will eventually slowly fade although it takes a couple of years to completely disappear.
I am grateful that a brain MRI has been scheduled for this month and I will be holding very tight to Hope for good scan results which show no brain mets. In the meantime, I will be anxiously awaiting your next update and continuing to hold your dear mother and your family very close in my heart and most caring thoughts.
With happy and healthy New Year best wishes, special caring, healing wishes for your mother, and continued Hope,
Bonni

[JolieS]

Hi everyone,

Happy thanksgiving! Hope all the US members had a lovely holiday with family and friends.

Sorry I haven't posted an update for quite a while. We've just been busy, trying to think about this disease as little as possible to be honest.

I'm happy to report that my mom is doing really well! She still has some pain from time to time in her right leg where the tumor was removed a year ago. We had a scare a few months ago when a small mass in her right hip showed up on a scan.. However the biopsy came back negative for malignancy thankfully! Still unsure what it may be, her doc mentioned it could be a cyst from the radiation treatment she had to that same leg? Anyway, it doesn't cause her pain so they're just going to keep an eye on it. Other than that she has had a few lung scans which show a couple spots but it's unclear if they are mets or not. Her onc so far has told her not to worry as many people have benign nodules in their lungs, and that they will continue to scan them every 3 months to watch for growth. She has been experiencing some abnormal gynecological symptoms the past few months so she is having an ultra sound and biopsy to her uterus performed next week. Hoping that those results come back negative for malignancies and it is an unrelated ailment - she says it's just part of getting old.

Since her diagnosis she has shown so much positivity and strength. She amazes me and I'm so proud to call her mom. So thankful to have her light in my life. I'm also so thankful for this community, many of us would be lost with out it.

Wishing everyone the best.

[D.ap]

Jolie,

It is good to hear from you all!
I am sorry for your moms scare but it sounds as though you all were VERY proactive in investigating first and deciding next on how to approach this mass
If you wouldn't mind sharing, how big was the the mass and what procedure / scans were used to biopsy the mass?
Your mom sounds like an incrediable women and I certainly see it in you as well.

Love
Debbie

[JolieS]

I believe it was a little bit less than a centimeter. Not sure the exact type of bone biopsy, but it was a pretty big procedure where she was put under sedation. It was an MRI that picked up the mass, which wasn't present in the previous scan of her leg so of course her doctors wanted to biopsy it.

[D.ap]

Hi Jolie
It sounds as though they may of removed the mass? Or was it around the hip bone?
In the uterus look see with ultrasound are they seeing a mass?
If so you all might want to reconsider the needle biopsy. The procedure of choice is to:
A) identify if need be by a scan with contrast
B) if the scan shows uptake and a cancer situation , then to plan to remove it or ablate it with positive margins

The needle biopsy can create a seeding of the cancer if it is indeed cancer
Love
Debbie

[Olga]

Deb, from the post of Jolie I can see that she said: "Anyway, it doesn't cause her pain so they're just going to keep an eye on it." So they did not remove it.
Re. Uterus - it is most probably an endometrial biopsy that is routinely done at the office and they have a kit that reduces the probability of dissemination if the procedure is done properly. No incision is done. It is done so frequently that they will not agree to replace it by the MRI or CT scan with the contrast - although I agree that it would be better for the patients to have it but I do not expect it to be a viable proposition.

[JolieS]

Yes, Olga that's correct. They did not remove the mass from her hip bone, because the biopsy was negative for malignancies.

I do believe the biopsy Olga described is the one my mom is having next week. Her gynecologist described it to be a pretty routine procedure that they perform on women of her age with her symptoms.

[D.ap]

Thanks for the clarification you both
Best of wishes to your mom on her procedure.
Keep mental note on the hip
Much love
Debbie