ChondroSarcoma (16 year old girl)

(NOTE: THIS MOVIE IS PART #2 OF THIS TESTIMONIAL.  CLICK THIS LINK TO WATCH THE FIRST PART)

 Shahar Milfelder, a 16 year old girl, is currently fighting ChondroSarcoma which is a very rare type of cancer that usually affects elder people. The family is looking for young adults from around the world who suffer(ed) from the same disease and may have information about best available treatment and doctors.

If you are a parent to such patient or if you have such information and would like to contact the parents, or alternatively if you wish to recieve information from them, please go to our “contact us” page.

MyChildCancer’s founder, Oded Grinstein, is interviewing Yael & Tamir about the different aspects of their daughter’s disease, treatment and challenges.

This interview is part of MyChildCancer’s mission to extract hidden life-saving information and make it easily accessible to other parents all over the world. Because knowledge saves lives.

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Q: Please mention your name, your daughter’s name, her age and the type of cancer which you are dealing with.

Our name is Tamir and Yael Milfelder. Our daughter’s name is Shahar. She is our youngest daughter – 16 years old. She has Chondrosarcoma for 4 months now.Q: So Shahar is 16 year old and she was diagnosed with ChondroSarcoma. The “Chondro” relates to the tissue between our bones. Please tell us about the early signs and the diagnosis process from your first visit to the doctor and until the final diagnosis.
Shahar felt she has something in her pelvic; she said that in one side she can push with her finger however on the other side she feels some kind of a lump. At first we didn’t take it too seriously however she kept pushing and after a month we went to the doctor who sent us straight to the hospital. At the hospital they immediately noticed that there was some kind of tumor in there. At first they thought it’s on her ovary so we were sent (from Schneider’s children hospital) to Beilinson Hospital. She was treated by the head of the department at Beilinson hospital who said he doesn’t see anything and sent us back to Schneider hospital. Over there they did some additional tests and said it is probably a sarcoma of the bone and that a biopsy is needed to make the final diagnosis. When the biopsy’s results cam in it turned out to be a very rare type of cancer, which usually attacks elderly people, and is called Chondrosarcoma.

We were then transferred to the Ortho-Oncology department at Ichilov Hospital, headed by Dr. Kollender, where she underwent a big surgery. During the surgery the doctors were unable to get clean margins in the pelvis’ joint area, which means that there are probably still cancerous cells there. BTW, during the surgery they had to remove the Os Ilium (the upper bone in the pelvic). The tumor that was removed was very big: 10x7x6 cm in size.
After two months we got recommendation to undergo Proton therapy – which are not available in Israel, therefore we came to the U.S to get this treatment in Procure center in Somerset, NJ.
Q: Since she was diagnosed and till today, how much time has passed?
Four months.
Q: During the time of the early signs, what did eventually make you go to the doctor?
Eventually it was Shahar: we heard her complaints, did not give it the deserved attention but she kept pushing and she took us to the doctor.
Q: And this first visit to the doctor turned your ‘red lights’ on.
Yes. It is important to mention that Shahar did not suffer from any pain nor did she have any other irregular signs such as bad appetite, loss of weight or any other signs. She is a basketball player, an active student, and there was no visible sign.
Q: So eventually, other than Shahar’s feeling that something may be wrong, there were no other signs.
Yes.
Q: The doctor sent you first to Schneider Children Hospital. What was the process there?
We started with scans – roentgen, ultrasound and MRI which demonstrated the tumor.
Q: How was the biopsy done?
The biopsy was done in Ichilov during a little surgery, via the abdominal.
Q: Was the biopsy part of the surgery?
No
Q: Was it part of the diagnosis process before the surgery?
Yes, it was done in Ichilov and the pathology was also done in Ichilov. There they have also determined the grade.
Q: Why did they do the biopsy separately than the main surgery? And why in a surgery rather than using a syringe?
At the beginning they thought it’s a sarcoma which according to the protocol needs to first get treated with chemotherapy and only then a surgery to remove the tumor before additional post-surgery chemotherapy is given. However, once they identified it as Chondrosarcoma following the biopsy, there was a change of plans.
I think they chose to do the biopsy via surgery because of the sheer size of the tumor which may require a deeper evaluation before a main surgery.
Q: With which other type of cancer was this one confused?
With bone sarcoma. They said it’s probably a sarcoma but no one thought it’s Chondrosarcoma, which differentiates from sarcoma by the fact that it is not treatable with chemotherapy.
Q: Chondrosarcoma is a rare type of cancer, which usually affects elder people and since it’s located in the Cartilage it is not treatable with chemo (chemotherapy is carried in the blood circulation which does not reach the cartilage).
Indeed, however even though it is originated from the cartilage it is still defined as a bone-cancer.
Q: What are the available sources of information which you are aware of for Chondrosarcoma? Where did you look and where did you find relevant information?
The information we saw was mainly from the web. Thanks to this information we got in touch with doctors in Israel and abroad and were able o consult with them.
Q: Can you mention the leading doctors for Condrosarcoma in Israel?
Our prime care giver was the head of the Orto-Oncology department in Tel-Aviv Ichilov hospital, Dr. Yehuda Kolander, with the support of Dr. Shlomo Dadya, Dr. Yair Gorcheck and Prof. Yair Bickels. We were mainly treated by Dr. kolander, however we also got consultation from Prof. Miryam Ben-Harush (Rambam Hospital), Prof. Gideon Rechavi (Tel Hashomer hospital) and Dr. Daniala Katz (Hadasah Ein-Karem).
Q: These are the leading names in Israel. Do you know who is considered to be a leaing doctor in the world for Chondrosarcoa? Which hospital has the most practice and which doctor has the most experience?
Yes, we know that Dr. Leonard Wexler (MSKCC) is considered an opinion leader in sarcoma cancers. Actually Shahar’s medical file was presented to Rabbi Firer who recommended we get in touch with Dr. Franklin Sim from Mayo clinic in Minnesota.
Q: You have mentioned that there were no clean borders post-surgery. What were the options presented to you then?
The only conceivable option was Proton therapy, which is not available in Israel. On a later stage, since the biopsy was sent for a second opinion by Dr. Rosenberg in Florida, it was determined that the grade is 1-2 and not 2-3 like they initially thought in Israel, which means it has smaller tendency to relapse.
Rabbi Firer then sent these results to Dr. Franklin Sim (Mayo Clinic) who said that a full recovery would only be possible with another surgery and an amputation of the leg. We decided not to peruse this path. In hindsight we know today that the grade was 2 out of 3 which correlates with the opinion of the doctors in Israel as well as Dr. Eugen Hug from the Proton center in NJ that the treatment should include Proton therapy post-surgery. The amputation surgery was off the table at that point.
Q: Explain the “Grade” issue: is it similar to “stage”?
Grade means the level of malignancy. No one spoke to us about stage. There are 3 levels of grade: 1, 2 and 3 which is the worst.
Q: Does Grade 3 mean the patient has it in other places in your body?
Not necessarily. It means that the tumor is of high malignancy type, with the tendency to spread to other parts of the body and create metastasis. It’s more violent. ChondroSarcoma in general is usually of a lower grade. In our case the grade is 2. The pathology results in Israel showed it’s between 1 and 2.
Q: So eventually, because it was defined as grade 2 you got the recommendation to amputate the leg?
Apparently yes. It is just a speculation, we want to make clear. They brought up these options after the surgery because of the further spread-out that unfolded; therefore they mentioned the option of surgery. Overall it was evident and they made it unequivocally clear to us that a chirurgic procedure is supposed to be the best solution.
Along with this they said that during the initial surgery, for the tumor removal, they went as far as they could reach in order to remove the cancer tumor but even though they scrapped the majority of it, there were unable to remove everything and a few spots remained untouched. That is why we have to proceed now with radiation therapy.
Q: Did you check or do something regarding the alternative medicine field?
We know about a particular lecture of a Mexican Doctor that specialized in the combination of nutrition and the spirit of the mind as an alternative but, no, we have not implemented any action towards that yet and we chose to focus on the conventional medicine.
Q: Last question; To other parents who may be observing you while they are coping with a similar situation of Chondrosarcoma of their own child, based on your 4 months experience, what would you recommend?
First of all as far as I know, Shahar is the only child in Israel with Chondrosarcoma, which means the knowledge about this type is proportionately limited. Therefore we decided that we’re the ones that must conduct this battle for our child, get as much help from friends, relatives, doctors and professionals, anything we can get our hands on to obtain as much knowledge as possible to find hope for a solution to this illness. After this treatment Shahar supposed to get back home healthy but we wish to continue the level of alertness during the entire process to maintain searching for information or resources that will add support and prepare us with other contingencies in case this illness rejuvenate.

Q: Any specific recommendations to other parents that begin this process?
It is like a business plan, you have to prepare well, harvest considerable amount of information from top doctors, experts and Internet. Don’t ignore any potential resource that can serve as guidance. Israel is a small country however it’s possible to get relevant information from doctors in the U.S.
Search and utilize every possible approach to acquire knowledge from reliable sources. Whatever they don’t know today they may know soon or later. Also, the advice of taking your own initiatives for this illness because no one will care enough or as much as parents do, now and later on.
We get as much help from doctors and give them a lot of credibility but no one will render as much effort and concerns than us parents. We are not hesitating to get any kind of help we can, such as this particular website (www.MyChildCancer.info) and the people who are running it. We meet and consult with them about our plans and even to acquire tools to search the internet and move forward with our plans.
I would like to add that parents to ChondroSarcoma patients who are watching us now, from anywhere in the world; our cooperation and exchange of information and knowledge could help us and vice versa.

Interviewer: So we are actually inviting parents who are watching us from all over the world and have relevant information on chondrosarcoma in children and young adults, to approach us and to share knowledge.
Yes. We are accessible via phone, e-mail and any other way of communication.

Oded: Thank you. Anything else?
It is important for me to mention that Shahar is a teenager in the age of fertility.
The operation that was done and the radiations in some degree are susceptible to harm and endanger her productivity in the future. That’s why as a preventative measure we made the choice of removing the ovary and did an egg collection so in the future when she get to the right age we won’t regret it and say we could have and we should have done that why didn’t we?
That was somehow a responsible decision on our part and was amenable by other experts.

Thank you.

Thank you.

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