Anniesantiago
Veteran Member
- Time of past OR future Camino
- 2006 to date: Over 21 Caminos. See signature line
Note from the mods: For anyone who has joined this story late, Annie has an earlier thread that starts at the beginning. This thread starts, as you can read below, with her first post-biopsy visit with the oncologist. I closed the earlier thread, just to keep things linear and chronological, because people were making comments that indicated they had not seen this later update.
I saw the first Oncologist/Surgeon today. My friend Chance, whose mother died of lung cancer two years ago, went along with me since Rob had just started a new job and Cameron was out of state. Here are the notes that Chance took for my family in case anyone here is interested. This may be more information than any of you want to know, so scroll on by if you want, but it's looking very positive!
***
OK -- some quick updates, we can talk in more detail later. This is a fairly invasive cancer. The biopsy showed 21% of the sampled cells were in a state of mitosis -- >20% is considered high. This means it's urgent, but not necessarily scary.
The crucial next steps are MRI and surgery. MRI involves injecting a die called gadolinium, which of course makes mom uncomfortable, but it's a step that could eliminate the need for 4 additional biopsies of suspect nodes in the breast. If the nodes light up in the MRI, they'll need to be biopsied to verify whether they need to be removed. If they do, it's probably going to be a mastectomy / full breast removal.
(NOTE FROM ANNIE: AFTER SEVERAL HOURS OF RESEARCH, I HAVE DECIDED NOT TO DO THIS MRI. I'M MORE AFRAID OF THE GADOLINIUM AT THIS POINT THAN I AM OF THE CANCER. IT APPEARS TO HAVE HORRIBLE LONG-LASTING DETRIMENTAL SIDE EFFECTS. IF I WERE YOUNG AND IF I DID NOT HAVE MCS, I MAY CONSIDER IT BUT I'VE DECIDED IT'S NOT WORTH THE CRAP SHOOT)
The surgery they're talking about doing is an “interval lumpectomy” next week — basically, get the known cancer out and get an analysis going. Mom is to understand that further surgeries may be required, but she can go on her trip to Spain after an interval lumpectomy unless the findings are very very bad.
Once they get the tumor out they will send it to California for genomic analysis which will tell us whether or not this particular tumor has genes the code for metastatic “skills”, like the ability to easily enter the vascular systems in the same way immune-system oriented cells can.
That’s very important for determining risk.
Chemotherapy is looking unlikely at this point, but radiation sounds like it’s going to be hard to avoid.
(NOTE FROM ANNIE: I'M ALSO HESITANT ABOUT RADIATION. IT'S ONE OF THE THINGS I WANT TO THINK ABOUT WHILE ON CAMINO)
Prognosis for the surgery itself is > 98% . (HOORAY!)
They are going to put her in touch with an oncology radiologist who can answer her questions about that stuff and the gadolinium.
The lumpectomy would also get the hematoma out, so she would heal faster.
(NOTE: I'VE DEVELOPED A LARGE HEMATOMA WHICH IS QUITE PAINFUL)
The prognosis sounds reasonable and we suspect that she may have the option of opting for a full mastectomy instead of lumpectomy plus radiation.
Recurrance expectations:
Lumpectomy: 20-40% w/o radiation; 2-5% with radiation (but then there are the effects of the radiation!)
Mastectomy: 1-3% with no chemo, no radiation
She has an appointment Feb 10th for a second opinion for Dr. Nathalie.
***
Annie's comments. I was so grateful to have Chance go with me. His mom passed away 2 years ago from lung cancer so he knew all the questions to ask and he took great notes. He was a wonderful support. All three of my sons couldn't get off work, and Chance volunteered to go with me. We've known him since he was 13 (he's in his 40's now) so he's like a 4th son to me.
The surgeon I saw today told me at the end of the appointment that her family all live in Spain!!! She was young and very kind and spent a lot of time with me. I was thinking I'd have Nathalie Johnson do the surgery, but this new doctor also has my heart. I'll still see Nathalie for a 2nd opinion, but I"m leaning toward letting De La Melana do the lumpectomy. I trust her. She said IF I decide to have radiation I can have it after I return from Spain.
I have decided I will NOT do the MRI because I fear the contrast gadolinium more than I fear the cancer. I'll have the lumpectomy then just keep an eye out for any new lumps. Hopefully there will be none. Anyway.. that's about it. I am pooped!
I've pretty much decided I will not do the VDLP this year as I will not be able to carry pack so soon after the lumpectomy.
At least up on the Frances, I can do pack transport most of the way.
The best thing the doctor said all during the appointment was, "You are NOT going to die from this!"
I liked that part.
I saw the first Oncologist/Surgeon today. My friend Chance, whose mother died of lung cancer two years ago, went along with me since Rob had just started a new job and Cameron was out of state. Here are the notes that Chance took for my family in case anyone here is interested. This may be more information than any of you want to know, so scroll on by if you want, but it's looking very positive!
***
OK -- some quick updates, we can talk in more detail later. This is a fairly invasive cancer. The biopsy showed 21% of the sampled cells were in a state of mitosis -- >20% is considered high. This means it's urgent, but not necessarily scary.
The crucial next steps are MRI and surgery. MRI involves injecting a die called gadolinium, which of course makes mom uncomfortable, but it's a step that could eliminate the need for 4 additional biopsies of suspect nodes in the breast. If the nodes light up in the MRI, they'll need to be biopsied to verify whether they need to be removed. If they do, it's probably going to be a mastectomy / full breast removal.
(NOTE FROM ANNIE: AFTER SEVERAL HOURS OF RESEARCH, I HAVE DECIDED NOT TO DO THIS MRI. I'M MORE AFRAID OF THE GADOLINIUM AT THIS POINT THAN I AM OF THE CANCER. IT APPEARS TO HAVE HORRIBLE LONG-LASTING DETRIMENTAL SIDE EFFECTS. IF I WERE YOUNG AND IF I DID NOT HAVE MCS, I MAY CONSIDER IT BUT I'VE DECIDED IT'S NOT WORTH THE CRAP SHOOT)
The surgery they're talking about doing is an “interval lumpectomy” next week — basically, get the known cancer out and get an analysis going. Mom is to understand that further surgeries may be required, but she can go on her trip to Spain after an interval lumpectomy unless the findings are very very bad.
Once they get the tumor out they will send it to California for genomic analysis which will tell us whether or not this particular tumor has genes the code for metastatic “skills”, like the ability to easily enter the vascular systems in the same way immune-system oriented cells can.
That’s very important for determining risk.
Chemotherapy is looking unlikely at this point, but radiation sounds like it’s going to be hard to avoid.
(NOTE FROM ANNIE: I'M ALSO HESITANT ABOUT RADIATION. IT'S ONE OF THE THINGS I WANT TO THINK ABOUT WHILE ON CAMINO)
Prognosis for the surgery itself is > 98% . (HOORAY!)
They are going to put her in touch with an oncology radiologist who can answer her questions about that stuff and the gadolinium.
The lumpectomy would also get the hematoma out, so she would heal faster.
(NOTE: I'VE DEVELOPED A LARGE HEMATOMA WHICH IS QUITE PAINFUL)
The prognosis sounds reasonable and we suspect that she may have the option of opting for a full mastectomy instead of lumpectomy plus radiation.
Recurrance expectations:
Lumpectomy: 20-40% w/o radiation; 2-5% with radiation (but then there are the effects of the radiation!)
Mastectomy: 1-3% with no chemo, no radiation
She has an appointment Feb 10th for a second opinion for Dr. Nathalie.
***
Annie's comments. I was so grateful to have Chance go with me. His mom passed away 2 years ago from lung cancer so he knew all the questions to ask and he took great notes. He was a wonderful support. All three of my sons couldn't get off work, and Chance volunteered to go with me. We've known him since he was 13 (he's in his 40's now) so he's like a 4th son to me.
The surgeon I saw today told me at the end of the appointment that her family all live in Spain!!! She was young and very kind and spent a lot of time with me. I was thinking I'd have Nathalie Johnson do the surgery, but this new doctor also has my heart. I'll still see Nathalie for a 2nd opinion, but I"m leaning toward letting De La Melana do the lumpectomy. I trust her. She said IF I decide to have radiation I can have it after I return from Spain.
I have decided I will NOT do the MRI because I fear the contrast gadolinium more than I fear the cancer. I'll have the lumpectomy then just keep an eye out for any new lumps. Hopefully there will be none. Anyway.. that's about it. I am pooped!
I've pretty much decided I will not do the VDLP this year as I will not be able to carry pack so soon after the lumpectomy.
At least up on the Frances, I can do pack transport most of the way.
The best thing the doctor said all during the appointment was, "You are NOT going to die from this!"
I liked that part.
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❤❤❤
. And Ultreia, always.
