Mom of 9yr old girl, diagnosis aug 12,2015. 7x8 cm primary tumor in pelvis w assumed multiple lung mets from cat scan. W are in Omaha, ne. Oncologist at children's hospital there has never treated, so we are getting advice from Cynthia herzog at md Anderson tomorrow. We know we need surgery to remove primary, but it sounds like clear margins can't be achieved. Specific questions on my mind today,
How important are clear margins of you already have mets?
How far should I push biopsy of the lung spots to assure they are cancer?
Has radiation been successful for anyone? What kind?
Thanks to anyone who reads and comments.
Prairie from Nebraska - Dx 2015
Re: 9year old, new diagnosis, pelvic primary w lung mets
Hi,
my name is Olga and I am mom to Ivan, he was dx in Nov.2003 - read his story in Patient updates. When he was first diagnosed, there were no lung metastases found but they were discovered only few months later so they might have been there but just to small to see - under the scanner resolution capacity. He had his primary resected and then he had numerous lung surgeries and cryoablations during the years till now, it was not easy but doable and he is here today and is living his life.
It is very important to have the primary resected by few reasons - it opens the door for the surgical or ablative treatment of the lung mets, reduces the tumor load - it increases the responsiveness to the systemic therapies and it prolongs lives anyways as the lung mets grow slowly versus big primary left untreated could represent a life danger soon or spread locally and grow into other vital structures. If not resected completely , the recurrence can be re-resected or ablated percutaneiously or radiosurgery pinpoint treated, which is impossible with the bigger volume. Also kids more responsive to the traditional chemotherapy so she can have it after the resection of the primary in hopes to eradicate the lung mets - the primary can not be eradicated as the bigger ASPS tumors can not be perfused by the chemo as they content necrotic areas. Lung mets can when they are small. But you need to look for the very best abdominal surgeon and insist on the surgery. Clear margins are important but not at the expense of loosing to much tissue/organs, I would better plan to treat recurrences than to cut to much as there are already lung mets.
You should not push the biopsy of the lung mets, just two consecutive CT scans would show if the spots grow.
Good luck and please let us know what they recommend.
Olga.
my name is Olga and I am mom to Ivan, he was dx in Nov.2003 - read his story in Patient updates. When he was first diagnosed, there were no lung metastases found but they were discovered only few months later so they might have been there but just to small to see - under the scanner resolution capacity. He had his primary resected and then he had numerous lung surgeries and cryoablations during the years till now, it was not easy but doable and he is here today and is living his life.
It is very important to have the primary resected by few reasons - it opens the door for the surgical or ablative treatment of the lung mets, reduces the tumor load - it increases the responsiveness to the systemic therapies and it prolongs lives anyways as the lung mets grow slowly versus big primary left untreated could represent a life danger soon or spread locally and grow into other vital structures. If not resected completely , the recurrence can be re-resected or ablated percutaneiously or radiosurgery pinpoint treated, which is impossible with the bigger volume. Also kids more responsive to the traditional chemotherapy so she can have it after the resection of the primary in hopes to eradicate the lung mets - the primary can not be eradicated as the bigger ASPS tumors can not be perfused by the chemo as they content necrotic areas. Lung mets can when they are small. But you need to look for the very best abdominal surgeon and insist on the surgery. Clear margins are important but not at the expense of loosing to much tissue/organs, I would better plan to treat recurrences than to cut to much as there are already lung mets.
You should not push the biopsy of the lung mets, just two consecutive CT scans would show if the spots grow.
Good luck and please let us know what they recommend.
Olga.
Olga
Re: 9year old, new diagnosis, pelvic primary w lung mets
Hello
My name is Debbie and our son , Josh 35 , was dx in August of 2012 with a left leg tumor much the size of your 9 year olds
tumor
I am sure sorry to hear of your daughters dx and please know we are all here for support
Please be assured that there's hope . Always.
Here is another person to contact whose daughter was dx'd at age of 2
The mom is Crystal and the daughter is Brinley
http://www.cureasps.org/forum/viewtopic.php?f=4&t=739
I agree totally with Olga on all accounts
The doctors maybe wants to perform radiation treatments to reduce the tumor to create positive margins?
It is interesting to note that I've noticed that the tumors typically are contained in a sack or encapsulated other than near the spine . So generally lymph glands aren't intruded upon . So with careful planning from , as Olga said ,a good surgreon, the tumor maybe a better canidate than first opinion stated and totally respectable
Write when able
Sincerely
Debbie
Our sons journey
http://www.cureasps.org/forum/viewtopic.php?f=4&t=750
My name is Debbie and our son , Josh 35 , was dx in August of 2012 with a left leg tumor much the size of your 9 year olds
tumor
I am sure sorry to hear of your daughters dx and please know we are all here for support
Please be assured that there's hope . Always.
Here is another person to contact whose daughter was dx'd at age of 2
The mom is Crystal and the daughter is Brinley
http://www.cureasps.org/forum/viewtopic.php?f=4&t=739
I agree totally with Olga on all accounts
The doctors maybe wants to perform radiation treatments to reduce the tumor to create positive margins?
It is interesting to note that I've noticed that the tumors typically are contained in a sack or encapsulated other than near the spine . So generally lymph glands aren't intruded upon . So with careful planning from , as Olga said ,a good surgreon, the tumor maybe a better canidate than first opinion stated and totally respectable
Write when able
Sincerely
Debbie
Our sons journey
http://www.cureasps.org/forum/viewtopic.php?f=4&t=750
Last edited by D.ap on Thu Sep 03, 2015 3:02 pm, edited 2 times in total.
Debbie
Re: 9year old, new diagnosis, pelvic primary w lung mets
Thank you so much. Md Anderson is going to call us in the next week with a surgical consult. We may just schedule with Omaha doc in the meantime as I am so frustrated with this waiting game. Thank you so much for being interested in my details.
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: 9year old, new diagnosis, pelvic primary w lung mets
Dear Vega343,
My name is Bonni Hess, mother of now 33 year old Brittany who was diagnosed with ASPS 14 years ago in July 2001 at age 19. I am so deeply sorry for your precious young daughter's very recent ASPS diagnosis and all of the numbing shock, fear, and sorrow that I know that you and your family are going through right now. I am grateful that you found your way to our Web site, that you have reached out for information and support, and that you are being so pro-active in your approach to fighting your daughter's disease, all of which are so extremely important in this difficult battle with this extremely rare cancer. Olga has provided you with some excellent information and advice which I completely agree with. Additionally, if it has not already been done, it is extremely important to have complete scans including the abdominal/pelvic/ and chest CT which I assume have already been done as well as a brain MRI (not just a brain CT which is inadequate to find any possible brain mets at the smallest most treatable size) and a full body bone scan to try to determine if there are any other mets anywhere else in your daughter's body. Vigilant and regular scans are essential in monitoring and managing this disease. I strongly agree with Olga that it is essential to remove the primary tumor as soon as possible to try to prevent it from continuing to disseminate tumor cells into the bloodstream and to help reduce your daughter's body's tumor burden and strengthen her immune system to better fight this disease. I understand the problem and concern about getting clear margins because of the difficult pelvic location of the tumor, but I strongly urge you to seek and obtain second surgical opinions from experienced and knowledgeable Sarcoma surgeons before you proceed with the surgery. Two excellent, experienced, and very knowledgeable Sarcoma surgeons are father and son surgeons Dr. Fritz Eiber and Dr. Frederick Eiber at UCLA in Los Angeles California. I think that it was Dr. Fritz Eiber who successfully removed with minimal impact to the other pelvic organs the difficultly located pelvic area tumor of one of the young ASPS patients on this Forum when other doctors in Boston had told her parents that surgical removal of the tumor would be extremely difficult and would require the removal of her reproductive and possibly other pelvic area organs. DO NOT JUST ACCEPT THE ADVICE OF A SINGLE SURGEON WITHOUT SEEKING A SECOND, THIRD, OR EVEN A FOURTH OPINION IF NECESSARY!! In our daughter Brittany's situation we were told by a highly respected and strongly recommended orthopedic surgeon that Brittany's large metastatic spinal tumor was essentially unresectable without risking paralysis or death so we sought and obtained a second opinion from a neurological surgeon who was very thankfully able to successfully completely resect the tumor with no resulting paralysis!! FYI, we personally had a very negative and unproductive experience with MD Anderson 14 years ago when we went there from Seattle for a consultation appointment following Brittany's ASPS diagnosis. If you would like to discuss it with me, or if there any questions that I may be able to try to answer for you, feel free to private message me on this site, e-mail me at BonniHess@aol.com, or call me on my cell phone at 425-829-3210. I know that you must be overwhelmed with all of the information and recommendations right now, so I will close to let you try to digest it all, but please know that I and the others on this Board are here to try to help you in any way that we can with shared information, advice, and strengthening support and encouragement. Know that you are not alone on this difficult journey, stay positive and strong, and let the bright light of Hope lead you through each day.
With special hugs, caring thoughts, healing wishes for your dear little daughter, warm friendship, and continued Hope,
Bonni Hess, mother of ASPS patient and 14+year survivor Brittany
My name is Bonni Hess, mother of now 33 year old Brittany who was diagnosed with ASPS 14 years ago in July 2001 at age 19. I am so deeply sorry for your precious young daughter's very recent ASPS diagnosis and all of the numbing shock, fear, and sorrow that I know that you and your family are going through right now. I am grateful that you found your way to our Web site, that you have reached out for information and support, and that you are being so pro-active in your approach to fighting your daughter's disease, all of which are so extremely important in this difficult battle with this extremely rare cancer. Olga has provided you with some excellent information and advice which I completely agree with. Additionally, if it has not already been done, it is extremely important to have complete scans including the abdominal/pelvic/ and chest CT which I assume have already been done as well as a brain MRI (not just a brain CT which is inadequate to find any possible brain mets at the smallest most treatable size) and a full body bone scan to try to determine if there are any other mets anywhere else in your daughter's body. Vigilant and regular scans are essential in monitoring and managing this disease. I strongly agree with Olga that it is essential to remove the primary tumor as soon as possible to try to prevent it from continuing to disseminate tumor cells into the bloodstream and to help reduce your daughter's body's tumor burden and strengthen her immune system to better fight this disease. I understand the problem and concern about getting clear margins because of the difficult pelvic location of the tumor, but I strongly urge you to seek and obtain second surgical opinions from experienced and knowledgeable Sarcoma surgeons before you proceed with the surgery. Two excellent, experienced, and very knowledgeable Sarcoma surgeons are father and son surgeons Dr. Fritz Eiber and Dr. Frederick Eiber at UCLA in Los Angeles California. I think that it was Dr. Fritz Eiber who successfully removed with minimal impact to the other pelvic organs the difficultly located pelvic area tumor of one of the young ASPS patients on this Forum when other doctors in Boston had told her parents that surgical removal of the tumor would be extremely difficult and would require the removal of her reproductive and possibly other pelvic area organs. DO NOT JUST ACCEPT THE ADVICE OF A SINGLE SURGEON WITHOUT SEEKING A SECOND, THIRD, OR EVEN A FOURTH OPINION IF NECESSARY!! In our daughter Brittany's situation we were told by a highly respected and strongly recommended orthopedic surgeon that Brittany's large metastatic spinal tumor was essentially unresectable without risking paralysis or death so we sought and obtained a second opinion from a neurological surgeon who was very thankfully able to successfully completely resect the tumor with no resulting paralysis!! FYI, we personally had a very negative and unproductive experience with MD Anderson 14 years ago when we went there from Seattle for a consultation appointment following Brittany's ASPS diagnosis. If you would like to discuss it with me, or if there any questions that I may be able to try to answer for you, feel free to private message me on this site, e-mail me at BonniHess@aol.com, or call me on my cell phone at 425-829-3210. I know that you must be overwhelmed with all of the information and recommendations right now, so I will close to let you try to digest it all, but please know that I and the others on this Board are here to try to help you in any way that we can with shared information, advice, and strengthening support and encouragement. Know that you are not alone on this difficult journey, stay positive and strong, and let the bright light of Hope lead you through each day.
With special hugs, caring thoughts, healing wishes for your dear little daughter, warm friendship, and continued Hope,
Bonni Hess, mother of ASPS patient and 14+year survivor Brittany
Re: 9year old, new diagnosis, pelvic primary w lung mets
So very appreciative of these detailed stories and advice. Seriously. I feel like I just can't roll around waiting for weeks and weeks and cart my kid all over the U.S. To get these multiple opinions, but will wait for md Anderson since they are closest to it now. Thank u guys, wow. I am also pursing a consult at Dana farber, but the wait is on there too since my slides aren't available to send now and may not be for another week.
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: 9year old, new diagnosis, pelvic primary w lung mets
Dear Vega343, I understand your reluctance to postpone treatment until you can obtain other surgical opinions as well as the travel and expense difficulties involved in seeking surgical and treatment consultations and advice from doctors in other areas of the country, but because ASPS is an indolent slow growing disease you have more time to seek and make treatment decisions, and it is essential to obtain opinions and advice from very experienced and knowledgeable Sarcoma oncologists and surgeons for the best possible outcome for your dear young daughter. This is a very challenging battle with an insidious disease and you need the most effective weapons available to fight it which includes being as knowledgeable, as pro-active, and as aggressive as possible in seeking and obtaining the best and most effective treatments. I urge you to at least call Dr. Fritz Eiber and Dr. Frederick Eiber to explain and discuss your daughter' s situation, and you may be able to send them a copy of the scans so they can tell you if they think the primary can be completely successfully removed with good margins and minimal impact to the surrounding pelvic organs. You can easily find their contact information with an internet Google search of their names. My most caring thoughts, very best wishes, and continued Hope are with you and your precious daughter, Bonni
Re: 9year old, new diagnosis, pelvic primary w lung mets
Md Anderson doctor did call us back, and recommended we do the surgery in Omaha w no margins as it is very difficult given the proximity to her rectum and nerves. I don't expect any more contact or advice from them as they weren't actually very helpful. I'm sure we will be given the option of post surgical radiation, will have to talk more about that w our oncologist who is in touch with dr. Spunt. We also had been pursing an appointment at Dana farber, although there don't have out pathology slide, they have scans and records. The admin person told me our case will be on a weekly soft tissue cancer meeting they have on Tuesday w team and surgeon there and she will have that info for me. Amazing since I haven't even given them my credit card number yet. Staying close to home would be best for a lot of reasons, but if they think they can do more we will go. Will keep u posted, thanks for the insight.
Re: 9year old, new diagnosis, pelvic primary w lung mets
Thank u Olga. Dr. Fritz doesn't do peds... Littrup I will look into. Peter liitrup?
So hard to wait!
So hard to wait!
Re: 9year old, new diagnosis, pelvic primary w lung mets
The quality of the initial surgery is the simply most important thing right now - not to have it faster but to given it the best chance to be complete and not to damage the inside organs/nerves in the process. Does your insurance allow you to go out of your area? Sometimes they deny that but people managed to get an approval for the sarcoma expert centers. Dana Farber is a good place and they are very familiar with ASPS patients. But Dr.Fritz is a very good option too. I would consult all of them. There could be very different surgical approaches and techniques to reduce the size before of the surgery in order to increase the chance to resect it completely, do not rush in before you evaluate all the options. When we were reviewing the options for Ivan's last adrenal surgery - he had a metastasis to the single remaining adrenal gland and the preservation was very important - the opinions we got ranged from impossible to resect without major abdominal surgery/loss of adrenal expected (locally) versus very minor surgery using new approach trough the back in Germany with 80% adrenal salvage versus no surgery at all just a cryoablation trough the subcutaneous approach using thin cryo probe by our brilliant Dr.Littrup who was very confident he would save the adrenal (versus our local ablation and radiation guys where almost certain the adrenal will be damaged). Well, we choose Dr.Littrup and it was all good, now we are waiting to see on the next scans if his cryo was a success.
Unfortunately 7*8 is the big tumor for Dr.Littrup to ablate completely in proximity of the vital structures, but I would consult him re. possibility to reduce the size prior of the surgery?
This is his assistant contact info, ask him if they can treat kids:
DTessier@lifespan
Derek Tessier MSN RNP
Image Guided Tumor Ablation
Second Floor Ultrasound
Rhode Island Hospital
593 Eddy Street
Providence, RI 02903
Ph 401-444-5707
Fax 401-444-3486
To get evaluated, you will need to prepare the following for mailing:
- two consecutive CT or MRI scans with the contrast on a CD (obtained at the radiology department where the scans are done);
- an info page with the name of the patient, date of birth, address, when Dx, what treatments if any were done, what is the current situation with the disease - known metastatic sites, numbers and sizes of the mets, any medications the patient is on, allergies, other health conditions and general health info.
- the copies of two latest note from the oncologist records.
- what is the problem that you want Dr.Littrup to evaluate re. possible cryo ablation - some mets that are of the immediate concern, unresectable primary etc .
Their e-mails do not accept any attachments and links to an outside depositories so all CD disks with the scans would need to be mailed (I used FedEx but any registered type of mail will do) and all papers need to be faxed or also mailed.
Dr.Littrup schedule at the Rhode Island Hospital is irregular - sometimes he is there two weeks in toe row but sometimes he is elsewhere so ask for the date of the ablation booked soon after Dr.Littrup says he could treat you.
Unfortunately 7*8 is the big tumor for Dr.Littrup to ablate completely in proximity of the vital structures, but I would consult him re. possibility to reduce the size prior of the surgery?
This is his assistant contact info, ask him if they can treat kids:
DTessier@lifespan
Derek Tessier MSN RNP
Image Guided Tumor Ablation
Second Floor Ultrasound
Rhode Island Hospital
593 Eddy Street
Providence, RI 02903
Ph 401-444-5707
Fax 401-444-3486
To get evaluated, you will need to prepare the following for mailing:
- two consecutive CT or MRI scans with the contrast on a CD (obtained at the radiology department where the scans are done);
- an info page with the name of the patient, date of birth, address, when Dx, what treatments if any were done, what is the current situation with the disease - known metastatic sites, numbers and sizes of the mets, any medications the patient is on, allergies, other health conditions and general health info.
- the copies of two latest note from the oncologist records.
- what is the problem that you want Dr.Littrup to evaluate re. possible cryo ablation - some mets that are of the immediate concern, unresectable primary etc .
Their e-mails do not accept any attachments and links to an outside depositories so all CD disks with the scans would need to be mailed (I used FedEx but any registered type of mail will do) and all papers need to be faxed or also mailed.
Dr.Littrup schedule at the Rhode Island Hospital is irregular - sometimes he is there two weeks in toe row but sometimes he is elsewhere so ask for the date of the ablation booked soon after Dr.Littrup says he could treat you.
Olga
Re: 9year old, new diagnosis, pelvic primary w lung mets
I just wanted to link you to a post Olga reported on in 2007
http://www.cureasps.org/forum/viewtopic.php?f=22&t=201
I was also able to find a NCBI medical link in reference to techniques to reduce tumor sizes to possibly avoid major muscle etc injuries
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3324196/
The consulting surgeons will know the best route to go as they will know the vital arteries / organs to watch out for in the ablation and or removal.
Radiation has its benefits but sure can be damaging immediately or later on to areas near by
Having been diagnosed with ASPS in today world, believe it or not ,we should consider ourselves lucky that we have the technology and knowledge to treat it at our finger tips. The technique 20 years ago for our son would of been amputation of his leg but thanks to imaging and the sharing of medical information we were able to simple remove the tumor
Keep the faith
and keep us up to date as you are able
Love
Debbie
Ps the NCBI link
http://www.ncbi.nlm.nih.gov
Just enter Alveolar soft part sarcoma in search and the resources will appear
http://www.cureasps.org/forum/viewtopic.php?f=22&t=201
I was also able to find a NCBI medical link in reference to techniques to reduce tumor sizes to possibly avoid major muscle etc injuries
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3324196/
The consulting surgeons will know the best route to go as they will know the vital arteries / organs to watch out for in the ablation and or removal.
Radiation has its benefits but sure can be damaging immediately or later on to areas near by
Having been diagnosed with ASPS in today world, believe it or not ,we should consider ourselves lucky that we have the technology and knowledge to treat it at our finger tips. The technique 20 years ago for our son would of been amputation of his leg but thanks to imaging and the sharing of medical information we were able to simple remove the tumor
Keep the faith
and keep us up to date as you are able
Love
Debbie
Ps the NCBI link
http://www.ncbi.nlm.nih.gov
Just enter Alveolar soft part sarcoma in search and the resources will appear
Debbie
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: 9year old, new diagnosis, pelvic primary w lung mets
Dear MJ, It was good to personally talk with you in our phone conversation a couple of days ago. In regard to your most recent update, as I discussed with you about our very negative and unproductive MD Anderson experience, I am unfortunately not surprised that your conversation with them was not very helpful or productive in terms of treatment recommendations. I strongly agree with Olga that it is critically important that you pursue additional surgical opinions and wait before moving forward with a surgery that may not offer the best possible results in terms of margins and impact to other organs. The treatment of the primary tumor may affect the rest of the ASPS battle and needs to be done as well as possible by a very knowledgeable, skilled, and experienced sarcoma doctor/surgeon. Were you referring to Dr.Fritz EIBER when you said that Dr. Fritz doesn't treat pediatric patients? I know that it was either Dr. Fritz Eiber or Dr. Frederick Eiber who did successfully resect the pelvic area primary tumor of a former pediatric patient on this Forum so I encourage you to at least pursue a consultation call to their office. I know and understand that you are anxious to have this insidious cancer removed from your precious little girl's young body but it is essential that it be done correctly because rushing the surgery just to get it done may concerningly cause more harm than good. Please take care, know how deeply I care, and keep in touch as you are able. With special hugs, caring thoughts, healing wishes, and continued Hope, Bonni
I
I
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Bonni Hess
- Senior Member
- Posts: 1678
- Joined: Mon Aug 14, 2006 11:32 pm
- Location: Sammamish, WA USA
Re: 9year old, new diagnosis, pelvic primary w lung mets
Hello again dear MJ, As I sit in the University of Washington MRI waiting area as Brittany has her brain and spinal MRI's a month earlier than her 4 month scan monitoring schedule due to some recent concerning severe and relentless headaches, I am reminded that you need to schedule your dear little girl for a baseline brain MRI and full body bone scan. Unfortunately, this insidious disease can and too often does metastasize to the brain and almost anywhere else in the body. Proactive, vigilant, and regular scans BEFORE symptoms develop are essential ro diagnose and treat any possible new mets at the smaalest most treatable size. DO NOT ALLOW THE DOCTORS TO REQUIRE THAT YOU WAIT FOR YOUR DAUGHTER TO BECOME SYMPTOMATIC BEFORE A BRAIN MRI AND OTHER REGULAR MONITORING SCANS ARE DONE as you told me that they are inexplicably/inexcusably advising!! With ongoing special caring thoughts, healing wishes for your little girl, and continued Hope, Bonni
Re: 9year old, new diagnosis, pelvic primary w lung mets
Bonnie, thank u for your words of wisdom. We have had a full bone scan, which was clear (thank goodness) and I am pursuing the brain MRI now. Yes, it was dr. Fritz eiber at ucla office that I talked to and they said he didn't do peds and referred me to someone else there. So far, we have had md Anderson, Dana farber, and a doctor glod at NIH agree with our omaha surgeon that gross removal is all that can be expected without basically cutting off her leg and giving her a colostomy. I would consider the drastic option, but given the mets and her small frame, I truly think we need the gross removal surgery to allow her to gain strength for anything upcoming and her quality of life. I will also pursue another recommendation I have for a Sloan Kettering surgeon by the name if La Quaglia just in case or for upcoming lung surgery. The Dana farber oncologist has agreed to consult with ours to develop further treatment plan, so we will meet with him when he is back in office 22sep. The surgery is planned for 02october in Omaha, which is waiting too long for us and I am trying to get it moved up in the schedule.
We have discussed radiation pouches being set in at 2 contact points, not sure if we will do this or not. Thoughts on the radiation?
I have had so many doctors want to wait until symptoms for the brain scAn and that just makes me angry. Our oncologist is on board with scanning now but he is on vacation, so I am determining if it's important before her surgery or not. I wonder if they would remove brain mets at the same time as primary tumor resection or not?
Thank you all for being involved in our details, really!
Mj
We have discussed radiation pouches being set in at 2 contact points, not sure if we will do this or not. Thoughts on the radiation?
I have had so many doctors want to wait until symptoms for the brain scAn and that just makes me angry. Our oncologist is on board with scanning now but he is on vacation, so I am determining if it's important before her surgery or not. I wonder if they would remove brain mets at the same time as primary tumor resection or not?
Thank you all for being involved in our details, really!
Mj
Re: 9year old, new diagnosis, pelvic primary w lung mets
Bonnie, I didn't get to ask about Brittany's scans, please let me know where I should look to know the outcome? My daughter (and my family) are glued to your success story and the information you possess. Huge positive thoughts for you and your family, please keep me posted or tell me where to look when you have the energy.
Mj
Mj