Barbara subscribed to the chondrosarcoma support group right from the beginning because, as her husband's main caregiver, she felt she needed information and support she was not able to receive elsewhere. Local cancer support group members were sympathetic, but didn't know anything about sarcomas, and Barb felt she needed to be with others who understood more what was happening. It is no fault of the doctors or hospital, but their main focus is naturally on the patient, and as statistics show, sometimes the caregiver is often overlooked.
Barbara and and Raj were devastated to realize that this might be a diagnosis of chondrosarcoma. All the scans were pointing to it. Reading up on the subject and asking questions of the doctors and getting the answers, was a hard pill to swallow. What would this all mean for his future? For her future. Would he be disabled? The ischium is a large bone in the pelvis.
If it were surgically removed, how would his body function? What about infection? How would she be able to keep working and still take care of him at home? Would their insurance cover everything? What would happen to the children?
But, as sometimes happens there is a happy ending. Not so much a misdiagnosis, but a clarification that all the scans had not been quite enough to make the diagnosis on their own. That is why it is so important to work with your medical team, to follow through with all testing, to request copies of those scan and biopsy reports, to get a second opinion, and to wait until you find out exactly what is going on before you jump on the "I've got cancer" bandwagon.
Barbara almost couldn't believe it. There was a part of her that was holding onto a tiny bit of hope for this, but being realistic about scientific accuracy, she did not really expect it. She and Raj recently had the BEST news anyone could EVER receive--the pathology reports (both Cedars-Sinai and City of Hope) said that the lesion in Barb's husband's ischium was a benign bone cyst and NOT chondrosarcoma after all!
Barb says, "We were overwhelmed by emotion when the doctor told us this amazing news, and are so grateful to God for giving my husband a second life!!!"
At first she didn't want to tell other members of the chondrosarcoma support group for fear of making someone feel bad about having a real diagnosis of Chondrosarcoma while her husband had escaped it. But, there are those in the group who are happy for her, who understand the luck of the draw, so to speak, and for many who are in the first steps of diagnosis, this gives hope, that they too, might have that small percent of a chance that it is something else.
The steps that Barb and Raj took to verify the diagnosis is also a very valuable tool that members of the chondrosarcoma support group can learn from.
The doctor at City of Hope, where they went for second opinion told them that the cyst still needs to be treated in the future to keep the pelvis from getting damaged. And plans are underway to do that. They have decided they can deal with it.
Incidentally the doctor told them that these types of cysts are typically found in children and teenagers, not in adults so that was one reason it might not have been considered as a possible diagnosis when first investigating his scans.
(I think of it kind of like imagining a sink full of dirty dishes and soapy water. You reach into the suds and feel an object. What is it? A fork? A spoon? You lift it out, wrong again. It's the handle of a tea cup! Even with an x-ray would I have guessed any better?)
Still, being smart people, they took the initiative of seeking out one more (third) opinion on the biopsy slides to another pathology lab just to be sure. It is no insult to the doctors to do so, and they helped to facilitate this. One should not be afraid of hurting a doctor's feelings over getting another opinion. We are all entitled to do so, and it is a wise move.
I want to thank Barbara and Raj for taking the time to share this information and giving me the opportunity to share this incredible circumstance of a chondrosarcoma that wasn't there. This helps considerably of creating more awareness and knowledge about Chondrosarcoma, it's diagnosis and what "differential diagnosis" it could be.
So, that is why I am sharing this information to give some semblance of hope to those during there own diagnostic process for chondrosarcoma. Before you sink into depression with the first indications, hang on to your hope and wait to see if it is true, at least until after the biopsy comes back. And don't forget to request those second or third opinions for verification. As I said, Chondrosarcoma can be difficult to diagnose even with the experts.
Barb and Raj are now planning to celebrate life and their good news by going on their well-deserved vacation after all that stress.
As Barb says in her good fortune, "May you continue to be blessed with a full and vibrant life!"
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