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Update on Anniesantiago

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Camino(s) past & future
CF 2006,08,09,11,12(2),13(2),14,16(2),18(2) Aragones 11,12,VDLP 11,13,Lourdes 12,Malaga 16,Port 06
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.
 
Last edited by a moderator:

Iriebabel

Veteran Member
Camino(s) past & future
Camino Frances 2018
Camino Del Norte & part of Lebaniego 2019
Thanks for the update @Anniesantiago . Wonderful news on your prognosis. Stay positive, live and walk in light and most of all Buen Camino! Wish you success in treatment and healing.

This past Christmas/news year I visited Salzberg, Austria then came home to foot surgery a week later. I got to see the places where one of my favorite movies were made( by the way Salzberg is amazing!)...this reminded me of one of my favorite sayings from the movie “the Sound of Music”.

.....”When God closes a door somewhere he opens a window”. You are not going to die from this means the window is open wide. My best wishes to you
 
Camino(s) past & future
SJPP2Santiago completed (Sept.15, 2018).
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.
...sending well wishes your way Annie. Sigh. I'm sorry you have to go through this. I'm glad you still get to go/experience another Camino. Take care.
 
Camino(s) past & future
CF 2006,08,09,11,12(2),13(2),14,16(2),18(2) Aragones 11,12,VDLP 11,13,Lourdes 12,Malaga 16,Port 06
...sending well wishes your way Annie. Sigh. I'm sorry you have to go through this. I'm glad you still get to go/experience another Camino. Take care.
Thank you.
Really, it's all good.
I'm not stressed at all.
I'm feeling very positive and grateful.
Things could be so much worse! I'm lucky!
 

mspath

Veteran Member
Camino(s) past & future
Frances, autumn/winter; 2004, 2005-2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015
Thank you Annie for sharing your news. Like all your digital friends I am glad that you are contemplating your options and staying positive.
Keep on finding strength and going forward!
 

VNwalking

Wandering in big circles
Camino(s) past & future
Francés ('14/'15)
San Olav/CF ('16)
Baztanés/CF ('17)
Ingles ('18)
Vasco/CF/Invierno ('19)
I can only echo what @mspath has said!
Thank you Annie for sharing your news. Like all your digital friends I am glad that you are contemplating your options and staying positive.
Keep on finding strength and going forward!
I'm so glad to know you have a super team. That makes all the difference in the world!
Buen camino, Annie...and may you have all blessings as you take one step at a time....
 

peregrina2000

Moderator
Staff member
Annie, I have a vivid memory of your postings about your diagnosis of MCS, your insurance battles, and how this issue affected your everyday life. I remember thinking then — wow, this is one tenacious, resilient, upbeat peregrina. In fact, if I remember correctly, it was the diagnosis that led you to the Camino, where you discovered you could once again eat bread, presumably because of the lack of chemicals. This time, too, you have shown those same qualities. And going back to the Camino seems like a total no-brainer for you, though it may not be the Vdlp.

Peregrina Annie, your willingness to share all these thoughts, even though you may never know it, is giving strength to a lot of us who are going through our own personal challenges and see your attitude and approach as, dare I use this overused word, inspirational.

Buen camino and abrazos, peregrina. Laurie
 

VNwalking

Wandering in big circles
Camino(s) past & future
Francés ('14/'15)
San Olav/CF ('16)
Baztanés/CF ('17)
Ingles ('18)
Vasco/CF/Invierno ('19)
dare I use this overused word, inspirational.
ABSOUTELY.
Sorry to yell, but I cannot agree more.
Thank you for voicing my thoughts so well, Laurie.
And a big hug to you Annie.
You have all strength for the way, and it's beautiful.
 

Cayou

Active Member
Camino(s) past & future
2015 Villafranca to SdC 2016 St Jean to LosArcos 2018 Leon to SdC 2019 Le Puy to Conques
Hi Annie: I've been following your journey and sending good thoughts. While I know absolutely NOTHING about your medical particulars, the 1-3% option does stand out. I recall the bravery that Angelina Jolie showed when she publicly shared her decisions. Whatever route you take, I know we all are wishing you a full recovery.
 

Bob from L.A. !

Veteran Member
Camino(s) past & future
Camino Francis 2012, 2014, 2016. Camino Norte 2018. Many more to come in my future God willing !
Thank you for the updates. You have remained in my prayers since your first posting of this "issue". You will remain there. Please keep us updated as things present themselves.....
 

KJFSophie

My Way, With Joy !
Camino(s) past & future
Camino Frances (2014 & 2015 ),Via San Francesco(2017) Camino Portugese (2018 )Camino Ingles(2019) CF
Thank you.
Really, it's all good.
I'm not stressed at all.
I'm feeling very positive and grateful.
Things could be so much worse! I'm lucky!
@Anniesantiago ...thank you for your update. I'm so happy that you had such a wonderful notetaker and support with you on your visit. It's essential to have that. Options are infinitely better than having none, and it seems you've been given a few.
Do you know why there are terrible scary dragons in fairytales? Because we need to believe they can be subdued. You've got your dragons, but you've also a suit of armor and an entire army behind you dear Annie <3
Keep looking for the light...you remain in my prayers
 

Bisnieta

New Member
Camino(s) past & future
(2021)
The best thing the doctor said all during the appointment was, "You are NOT going to die from this!"

Outstanding news, this is a problem that can be managed & it sounds like you're well on your way to getting a capable & caring team in place to help you do just that.

I guess it's too early to say congratulations, but surely you & your kids must be breathing a heckuva lot easier today!
 

Michael-FL

Active Member
Camino(s) past & future
Caminho Portugues (2017)
Frances/Salvador/Primitivo (2021)
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.
Annie, I am offering prayers of thanksgiving and will continue to pray for your recovery.
 

MTtoCamino

Veteran Member
Camino(s) past & future
Francis SJPdP to Finnestere April(2014)
Annie I haven’t been on much in the last few years but I am sending some prayer your way. You are an inspiration on this site. I very much hope you benefit with the improvements of care we have had in the last few years.
Keith
 
Camino(s) past & future
Camino Frances (2011), Camino Frances (2015), Camino Ingles (2017), Camino Muxia (2017), LePuy(2019)
Good news for you, Annie. In fact, from my point of view, it's one little glimmer of hope from an otherwise distressing start to the new year. May you have even more good news in 2020!
 
Camino(s) past & future
Frances (16,'17,'18)
Finisterre/Muxia( '17, '18)
Portuguese Central & Coastal ('18)
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.
Gratitude to you, Annie, for sharing your journey and the good news. You have helped so many people along the Way and we will continue to hold you in the light and send good Camino energy. You are in good hands. And one of the best parts of your story is how you have a team, family, friends, doctors you trust, and a pilgrim family. You are helping each of us, with your example of meeting this challenge with the both the courage and trepidation of climbing the high mountains of the Camino. Blessings and Buen Camino ❤👣. And Ultreia, always.
 

LTfit

Veteran Member
Wonderful news Annie. I can only imagine how important it was to have support during your meeting with the oncologist.

I've just finished off a month in Ponferrada and am pleased that I was there to help a Camino friend who has breast cancer for the second time. I accompanied her to the doctor and have taken her to her first 2 chemo treatments (she has triple negative and therefore needs chemo before surgery).

I had had no idea about her diagnosis when I decided to go to Ponferrada. As she said to me recently - the Camino provides.

Hope to welcome you in Villares de Órbigo.

Keep us informed.
 

ShelleyS

New Member
Camino(s) past & future
SJPDP 9/20/17
Thank you.
Really, it's all good.
I'm not stressed at all.
I'm feeling very positive and grateful.
Things could be so much worse! I'm lucky!



You are in good hands Annie. Dr De La Melena is wonderful and Nathalie Johnson is too. They are both highly skilled surgeons and both are lovely people. I live in Portland and am an oncology social worker and just saw Dr Johnson with my daughter in law. Second opinions can help to provide more perspective and information.

If there is anything I can help you with, please let me know. ❤
 
Camino(s) past & future
cycled from Pamplona Sep 2015;Frances, walked from St Jean May/June 2017. Plans to walk Porto 2020
Hola Annie and thanks for sharing. Yes the news is intimidating for some. But for those of us in a similar boat it gives the strength to get out of bead each morning and face the new day head on. I have decided that I won’t go more personal here but those of you who follow me on Facebook will know the full story. Best wishes Annie, chin up and keep smiling 👍🙏👌🏻🏃🏻‍♀️
 

Carol06

Active Member
Camino(s) past & future
Frances (May 2012)
Frances (May 2015) all going well and with my husband this time.
Hi Annie. Four years ago I had a lumpectomy at the end of January followed by a month of radiotherapy in March. My husband and I left for the Camino at the end of April. I had limitations at the beginning because I was so unfit and had trouble carrying my pack....not because of pain but because it was heavy. I bussed a couple of times while my husband walked. By the time we got to Leon I was up to speed and carried on as normal. We had a lovely arrival in Santiago.

It can be done. Wishing you all the best Annie.
 

gittiharre

Veteran Member
Camino(s) past & future
CF Austria Czech Le Puy Geneva RLS V. Jacobi V. Regia V. Baltica/Scandinavica Porto Muxia
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.
Hi Annie. Thank you so much for letting us in your diagnosis. My stepdaughter had that very cancer in her 40's in 1 breast. Her husband is a Dr and she is a very educated and clear thinking person. She decided to go for bilateral mastectomies, instead of the radiation option. She has never looked back.
She gets checked regularly, no recurrence and is relieved, not to have to worry about more springing up in remaining tissue.
I am sure, you will make a good decision for yourself.
I am still going strong after high grade bladder cancer diagnosis 5 years ago and subsequent treatments. Have walked right through. Recurrence risk, 86% surgery only and 56% with additional BCG treatment, which I had. So far, so good.
 
Camino(s) past & future
Frances: March 2013
Le Puy: July 2015
Portugues: April 2018
La Plata: March 2020-to be continued
Good news Annie, but sorry you won't be walking the VDLP in March. Since we hope to be there in March my wife and I were hoping to meet you. All the best...will think of you during the passage.
 

alexwalker

Forever Pilgrim
Camino(s) past & future
(2009): Camino Frances
(2011): Sevilla-Salamanca, VdlP
(2012): Salamanca-SdC, VdlP
(2014): SJpdP-Astorga
(2015): Astorga-SdC
(2016) May Pamplona-Moratinos; Sept.:Burgos-SdC
(2016): August/Sept: Camino San Olav (Burgos-Covarubbias), Burgos-Sarria
(2017): May: Portuguese; Sept: Pamplona-SdC
I
Thank you all so much and I'm sending LOVE and HEALING prayers to all who are on this journey with me.
I have been following your posts on this issue since you started to inform us, and you, as a Camino friend, have stayed in my thoughts, for what its worth. Hang in there, seems you have been lucky. Sending good thoughts your way.
 

kazrobbo

Tassie Kaz
Camino(s) past & future
CF 2012
CP 2015
St Olavs Norway 2016
88T Japan 2017
PWC/VF 2019
Israel 2020 X
Wales CP 21?
KK?
VdlP?
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)

They are going to put her in touch with an oncology radiologist who can answer her questions about that stuff

The prognosis sounds reasonable and we suspect that she may have the option of opting for a full mastectomy instead of lumpectomy plus radiation.

She said IF I decide to have radiation I can have it after I return from Spain.
Many positive aspects from your update Annie. Most importantly of all; you have choices...& the capacity to decide between those choices.
I worked in a Radiation Oncology unit for ten years & would be more than happy to answer any queries you may have with regards to that treatment option.
Also my Mum was diagnosed with breast cancer last year; she underwent a lumpectomy & a follow-up course of radiation.
Please feel free to contact me as a reply here or by PM if I can be of any help.
Wishing you all the very best with this...your journey of a different kind. 🤗
👣 🌏
 
Camino(s) past & future
CF 2006,08,09,11,12(2),13(2),14,16(2),18(2) Aragones 11,12,VDLP 11,13,Lourdes 12,Malaga 16,Port 06
Good news Annie, but sorry you won't be walking the VDLP in March. Since we hope to be there in March my wife and I were hoping to meet you. All the best...will think of you during the passage.
I will start on the CF. If I get to the point I can carry my pack I may hop back down.
 

VNwalking

Wandering in big circles
Camino(s) past & future
Francés ('14/'15)
San Olav/CF ('16)
Baztanés/CF ('17)
Ingles ('18)
Vasco/CF/Invierno ('19)
You are in good hands Annie. Dr De La Melena is wonderful and Nathalie Johnson is too. They are both highly skilled surgeons and both are lovely people. I live in Portland and am an oncology social worker
My goodness. The camino [forum] provides! ;)
What are the chances? If this isn't affirmation you're headed in the right direction, Annie, what is?
Thank you for the heatrearming post, Shelley...
And buen camino, Annie! May if be the perfect preparation for what's next.
 
Camino(s) past & future
CF 2006,08,09,11,12(2),13(2),14,16(2),18(2) Aragones 11,12,VDLP 11,13,Lourdes 12,Malaga 16,Port 06
. She decided to go for bilateral mastectomies, instead of the radiation option. She has never looked back.
This surgery on the 12th is to check the lump and be sure what it is. Mastectomy is not out of the question once I return and the labs are back. Congratulations to both of you! This is a crazy road!
 
Camino(s) past & future
CF 2006,08,09,11,12(2),13(2),14,16(2),18(2) Aragones 11,12,VDLP 11,13,Lourdes 12,Malaga 16,Port 06
[QUOTE="kazrobbo, post: 821063, member: 85485
I worked in a Radiation Oncology unit for ten years & would be more than happy to answer any queries you may have with regards to that treatment option.
👣 🌏
[/QUOTE]

Thank you very much! I may PM you tomorrow with some questions. 😊
 

marilyn van graan

Active Member
Camino(s) past & future
Frances (2012) VDLP (2014) Portuguese (2015)
Hi Annie - your wonderful positive attitude is part of your healing - thank you for sharing your journey - I know it will bring comfort to others who are walking your walk right now. I pray for your healing - spiritual and physical - and as you walk your camino may your heart be constantly filled with sunshine, joy, happiness and gratitude - buen camino dear friend for both of your walks ahead - much love XXX
 
Camino(s) past & future
Francis SJPDP-SDC (2014, 2015, 2016, 2017) , Norte 2018
Pilgrim Office 2018, Hospitalero Acebo 2019
WE have been faithfully praying for you Annie on the sidelines here, and excited that you will get this behind you and move on even stronger in the future! Ed

PS, I still can remember running into and your small group one evening on the Francis and lord knows, I can't remember the year but I remember you as we met for the first time....
 

Marbe2

Active member
Camino(s) past & future
2015-2019 walked all or more than half of CF 7 times... CP recently cancelled by Covid 19!
Annie, Glad Chance was able to be your scribe and supporter at your consultation.
Sounds like you are your best advocate and carefully considering and weighing Your results in a way that will provide you with a treatment plan that fits your life and recovery! You have already started your next Camino, I Think. Love and prayer,
Marlene
 

Pray'nwalk

Member
Camino(s) past & future
2015. Levante, Avila-Toro & Sanabres, Ourense-Santiago
2017. Invierno & Oseira monastery
Annie, Last October I did the Komen 3-Day cancer walk in Philadelphia (60 miles in 3 days), and I did it primarily as a way of training for my next Camino. Time after time, someone asked me who I was walking for. My only response was, "For everyone who needs prayers to get through this." It seems I walked it for you. Thank you for being so courageous!
 
Camino(s) past & future
CF 2006,08,09,11,12(2),13(2),14,16(2),18(2) Aragones 11,12,VDLP 11,13,Lourdes 12,Malaga 16,Port 06
Thank you everyone, again, for your kind words, your war stories, your prayers, and good wishes.
I'm doing well.
Got my ONCO score and it was ZERO, which is most excellent and means NO chemo and NO radiation.
Looking forward to my March/April Camino and my surgery upon my return April 23.
Life is good!
Annie
 

dbender49

New Member
Camino(s) past & future
Francés 2020 - Planned
Thank you everyone, again, for your kind words, your war stories, your prayers, and good wishes.
I'm doing well.
Got my ONCO score and it was ZERO, which is most excellent and means NO chemo and NO radiation.
Looking forward to my March/April Camino and my surgery upon my return April 23.
Life is good!
Annie
Ahhh! Deep breath of relief for you, Annie! Prayers for an excellent Camino for you. Laura
 

Jeff Crawley

Veteran Member
Camino(s) past & future
Currently on a "Virtual" Camino and striding out across Castile y Leon!
Thank you everyone, again, for your kind words, your war stories, your prayers, and good wishes.
I'm doing well.
Got my ONCO score and it was ZERO, which is most excellent and means NO chemo and NO radiation.
Looking forward to my March/April Camino and my surgery upon my return April 23.
Life is good!
Annie
Wooty Woot Woot!
 

CWBuff

Active Member
Camino(s) past & future
in Planning stage: Frances (SJPdP --> SdC) & Finisterre "2021" ... (GOD WILLING!)
Zero is... beyond AWESOME!!!!
Congrats
So happy for you
👍♥
 
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