Brad and I travelled to Houston at the beginning of this week to visit MD Anderson Cancer Center. They are known as the #1 cancer center in the US, and most likely the world. The doctor I visited mentioned seeing someone from the UAE before me. Folks travel from near and far to be treated here.
Overall the visit went very well. I have a friend from college that now works there as an industrial engineer improving patient flow through the hospital (similar to my research/thesis at MGH). She was able to guide us around the buildings, prayed with us before the day started, and even came and sat with us in waiting rooms! (Thanks Rachel!)
Dr. Valero is one of the leading experts in IBC and has helped develop the standard of care for cases like mine. So it was very encouraging to hear that we were on the right track in terms of the steps we've taken so far and the type of chemo we started right away. He was very happy to hear that the chemo was already making a difference. He wanted us to come back after we are done with the first type of chemo (in 3 more rounds, 6-8 weeks from now) to discuss which flavor of chemo to do for the second set of 4 rounds. He was mentioning the same types that my oncologist here in Dallas has been recommending so that was all reassuring as well.
He did want MD Anderson to do a sonogram/mammogram for their own starting reference point, so we ended up coming back on Tuesday for another morning at the hospital. I'm glad we had the sonogram done as it was much more comprehensive than the first one I had a couple weeks ago here in Dallas. This one imaged the lymph nodes up past my collar bone, my armpit, and side to my back. This will be helpful to the surgeons to know how far to go when removing all the associated lymph nodes and other tissue when it comes time for the mastectomy.
The radiologist was really nice in trying to explain to me what is going on inside my breast right now. From what I understand, it sounds like my entire breast is full of cancer (can we pause for a moment and think about how scary that sounds??). With IBC, the cancer disperses throughout the breast in, let's call them, "sheets". Then as they hit a critical mass, they start to join together and that's when my milk ducts got blocked causing me to see symptoms. As things progress, and oh boy did they progress quickly with me, they start to form the masses inside my breast. The radiologist said on the report she will write up it will say the size of the "tumor" is the size of my breast. And it will be like that on all future reports until they don't see any more cancer from imaging (even then it could still be there, and a pathologist would have to look at tissues under a microscope to know whether "islands" of cancer were still throughout). She instructed me to watch the qualitative language to change over time. So I'm looking for words like the cancer is becoming more "fragmented" or "stringy" or "less dense". It has to go back the way it came and start to break apart and finally go completely away (wouldn't than be fun??).
This seems a bit daunting to me though. Someone with a X cm lump can do a bunch of rounds of chemo and it still not completely go away. How does someone get rid of this much cancer and have a "complete response" with chemo? Maybe this is why the prognosis is so rough? I'm really hoping I'm "just" Stage 3 because this sounds like plenty to fight all on its own. The radiologist was encouraging saying that the images do look like it is starting to get lumpy and more stringy versus two weeks ago. It sounds like the cancer is responding positively to the chemo.
[Note: I really want to get smart on how the cellular biology of all this is working, and I will, I have had a few other things on my plate recently, so I'm not quite there yet. So if any of what I've just explained turns out to be funny medical logic, I'll come back and correct it.]
Being at MD Anderson made my diagnosis feel much more real. Everyone there has cancer and is sick. I actually really hate cancer waiting rooms. They are so stinking sad. Everyone looks so depressed and no one smiles (except for me of course). When I was waiting for my sonogram at MDA a lady (55ish) who was a 5-year survivor was complaining to me about how unhappy she was with how her implants looked (and then proceeded to show me her reconstruction, thank you very much). I'm going to admit, it was really hard to show her grace. I tried explaining to her that if I'm alive in 5 years it will be the happiest day on earth for me. If I get to see David turn 5 years old, it would be the most wonderful miracle ever. Crying a little seemed to help stop her complaining - hey, you gotta do what you gotta do. So yeah, cancer waiting rooms - the worst!
I think that's it for MDA. Next post will be more fun on how we celebrated our anniversary and all the fun folks we saw while in Houston! Yay!
Overall the visit went very well. I have a friend from college that now works there as an industrial engineer improving patient flow through the hospital (similar to my research/thesis at MGH). She was able to guide us around the buildings, prayed with us before the day started, and even came and sat with us in waiting rooms! (Thanks Rachel!)
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Comforting to have your rare disease on a wall! They have heard of it here! |
He did want MD Anderson to do a sonogram/mammogram for their own starting reference point, so we ended up coming back on Tuesday for another morning at the hospital. I'm glad we had the sonogram done as it was much more comprehensive than the first one I had a couple weeks ago here in Dallas. This one imaged the lymph nodes up past my collar bone, my armpit, and side to my back. This will be helpful to the surgeons to know how far to go when removing all the associated lymph nodes and other tissue when it comes time for the mastectomy.
The radiologist was really nice in trying to explain to me what is going on inside my breast right now. From what I understand, it sounds like my entire breast is full of cancer (can we pause for a moment and think about how scary that sounds??). With IBC, the cancer disperses throughout the breast in, let's call them, "sheets". Then as they hit a critical mass, they start to join together and that's when my milk ducts got blocked causing me to see symptoms. As things progress, and oh boy did they progress quickly with me, they start to form the masses inside my breast. The radiologist said on the report she will write up it will say the size of the "tumor" is the size of my breast. And it will be like that on all future reports until they don't see any more cancer from imaging (even then it could still be there, and a pathologist would have to look at tissues under a microscope to know whether "islands" of cancer were still throughout). She instructed me to watch the qualitative language to change over time. So I'm looking for words like the cancer is becoming more "fragmented" or "stringy" or "less dense". It has to go back the way it came and start to break apart and finally go completely away (wouldn't than be fun??).
This seems a bit daunting to me though. Someone with a X cm lump can do a bunch of rounds of chemo and it still not completely go away. How does someone get rid of this much cancer and have a "complete response" with chemo? Maybe this is why the prognosis is so rough? I'm really hoping I'm "just" Stage 3 because this sounds like plenty to fight all on its own. The radiologist was encouraging saying that the images do look like it is starting to get lumpy and more stringy versus two weeks ago. It sounds like the cancer is responding positively to the chemo.
[Note: I really want to get smart on how the cellular biology of all this is working, and I will, I have had a few other things on my plate recently, so I'm not quite there yet. So if any of what I've just explained turns out to be funny medical logic, I'll come back and correct it.]
Being at MD Anderson made my diagnosis feel much more real. Everyone there has cancer and is sick. I actually really hate cancer waiting rooms. They are so stinking sad. Everyone looks so depressed and no one smiles (except for me of course). When I was waiting for my sonogram at MDA a lady (55ish) who was a 5-year survivor was complaining to me about how unhappy she was with how her implants looked (and then proceeded to show me her reconstruction, thank you very much). I'm going to admit, it was really hard to show her grace. I tried explaining to her that if I'm alive in 5 years it will be the happiest day on earth for me. If I get to see David turn 5 years old, it would be the most wonderful miracle ever. Crying a little seemed to help stop her complaining - hey, you gotta do what you gotta do. So yeah, cancer waiting rooms - the worst!
I think that's it for MDA. Next post will be more fun on how we celebrated our anniversary and all the fun folks we saw while in Houston! Yay!
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