I would love some advice.....on a scary topic. Breast cancer.

[Kaleigh]

FireGoddess,
I am praying for good news tomorrow. I have been thinking about you since I read your first post about your mom. You have gotten such great advice and I am praying for a great outcome to all of this. As someone that has been a caretaker to family members going through cancer and other illnesses it''s never an easy road. But I wish you only good vibes and good thoughts. Hang in there, Lisa

 

[FireGoddess]

Thanks Heather...Thanks Lisa... just called mom and tried to calm her down about tomorrow, be positive, not let her hear I''m scared. I hope there''s some good news. She could use a little, for sure. Love to put one ''crisis'' behind us so we can deal with the next one.

 

[monarch64]

FG, just wanted to say I hope things go well tomorrow, and that I''m thinking of you and your mom.

--Heather

Good luck!

 

[Lorelei]

Thinking of you all FG, best of luck for today

 

[mrssalvo]

FG, thinking of you...any news?

 

[FireGoddess]

Soooooooooooooooooooooo, I just got off the phone with the doctor. Ended up waiting at home all day for the news.

The bad news is, it is stage 3, it is invasive, and they are assuming based on the sheer size of the tumor that the lymph nodes are involved. The good news is that the bone and full body scans came back negative, which basically means there are no metastases anywhere that are detectable. The limit of resolution of the tests is 7 to 8 millimeters, which means there may be metastases that are smaller than that but not detectable. However we''re trying not to think that way right now.

Mom is going to start chemo next week (AC+T) for the next 6 months, followed by surgery, and then radiation, and then hormone blockers. Thankfully the tumor is hormone sensitive and her(-), which means it can be treated with hormone blockers and isn''t as aggressive as a her(+) tumor. I think it''s the best news we could possibly hope for at this juncture, for which I am very grateful. I did not ask about prognosis because I didn''t want to hear a number right now. But at least there are things we can do to fight. The doctor said the main concern right now is not how big the tumor is or how many lymph nodes are or aren''t involved - the main thing here is keeping it from spreading elsewhere, or killing any small clusters of cells that have already spread.

Thank you everyone for your prayers, emails, and thoughts. You guys are truly such a great support and comfort to me. I think it''s the first day in quite a few my mom hasn''t felt so down, which is great. It helps to finally know we''re going to do something about it instead of just worrying.

 

[movie zombie]

thanks for the update. continued good thoughts to you and your family.

movie zombie

 

[sarita]

FG,

I am so sorry to hear this news. I hope the chemo & upcoming treatments will be met with success and that your mom continues to stay positive through this. I too, cannot believe regular mammograms are not enough. My mom (will turn 50 this summer) gets hers every year but I never heard of ultrasounds. Thank you so much for sharing this information, I will definitely mention it to her when I see her this Mother''s Day!

You and your mom will be in my thoughts.

 

[Lorelei]

Continuing to send positive thoughts and prayers to you and Mom. Thanks for the update.

 

[hlmr]

Thanks for the update. I am glad to hear your Mom was feeling a little more up. The worst part is not knowing.

Take care,

Heather

 

[canuk-gal]

HI:

Wow FG, you''ve had a lot of news and information to digest. Glad your Moms scans are "clear". Hope you guys are managing as best you can.

After my sisters diagnosis at 40 with bc, she had sentinal node mapping to determine the extent of the invasion to her adjacent lymph nodes. Luckily it was miminal; she had surgery, radiation and chemo. She is almost finished her 5 year tamoxifin regimn (her tumor was estrogen driven) and is "clean". Good results can happen for your Mom too!!!!

Thinking of you during this trying time.

cheers--Sharon

 

[FireGoddess]

MovieZombie - Thanks for your concern and good thoughts - I feel like they''re helping since we''ve finally gotten some good news.

Sarita - Thanks for your post as well and your kind words. Definitely pass the info on to your mom, it''s something we should all be aware of. The oncologist yesterday did indeed confirm that this kind of breast cancer my mom has is never detected by mammograms.

Lorelei - Thank you for your thoughts and prayers and support, I really appreciate it so much!!

Hlmr - You''re right, the worst part is not knowing. It''s much better when you can actually start fighting this thing instead of worrying about it. Thank you so much for being here and for your support as well!

Sharon - Thanks for your kinds thoughts and words, and for sharing the info about your sister. I was reading about sentinel node mapping and was prepared to ask the doctor about it. In my reading I saw that if chemo was given first, that the mapping would be inconclusive. I was hoping we could do the sentinel node thing but the doctor said he just assumes the lymph nodes are involved based on the size of the tumor, and we''re just gonna go really aggressive with the chemo to hopefully kill whatever has gotten there. I am so happy to hear that your sister is almost through her 5 years of tamoxifen without recurrence. This is so great! Instead of tamoxifen, the aromatase inhibitors have been recently shown to be more efficacious in post menopausal women, so mom is gonna get one of those after the radiation since her tumor is also estrogen and progesterone receptor positive.


I go back and forth thinking YAY the cancer hasn''t spread, and OHGOD it''s so advanced already that it''s hard for me to balance my feelings. The thought of her possibly succumbing to this is one I can''t even fathom so I sit here and just think this HAS to work, this will work, end of story. I hope that''s our happy ending.

 

[mrssalvo]

I hoping for a happy ending for you too FG. Please keep us posted.

 

[monarch64]

FG, it''s good to hear your mom''s cancer is treatable and the scans were clear!

I know it''s hard to focus on the positive side of things and to not wonder about a % of survival and all of that. The more you educate yourself with your own research and are educated during your mom''s treatment, the less scary it gets...when I first found out about my dad I really got scared and worried, but the more familiar I became with all the terms that go along with cancer and its treatment, and saw that his doctors were doing everything they could for him, the better I felt about things and was able to think more positively for him. You sound like you''re already feeling a bit better about things and like you''re a positive person on the whole, so your mom is lucky to have you in her corner--it will help tons.

I will be "practice" walking 20 miles tomorrow and will be keeping you and your mom and family in my thoughts. Take care, and thanks for giving us an update!

Heather

 

[tawn]

Saw this on the front page of the New York times and thought you might be interested in checking it out. There is such an overwhelming abundance of information out there, it''s hard to sort through it all!

NY Times article

 

[Sundial]

FireGoddess I have been thinking of you and your mom as Mother''s Day approaches. At least now you know what you are facing and your mom will probably feel better to get her treatment underway. My thoughts and prayers are with you!

 

[blueroses]

FG, I just saw this thread for the first time as I''m rarely over on this forum.

I''m SO SORRY to hear about your mom''s illness. I''m glad to hear that it''s treatable, and these next 6 months prior to surgery will be so hard for all of you I know, but we are here for you!!!

BIG HUGS!!!!!!!!!

 

[Mara]

ditto what blueroses said...FG my thoughts and prayers are with you and your mother...keep your spirits up!!

 

[cellososweet]

Beautiful, sweet girl,
My mother is a breast cancer survivor and a lot of my family has been lost to different cancers, so i know how scary it can be. I work at an oncology lab and work with drug resistance and biomarkers. I''m surrounded by it all the time. I want you to know that these things can be beat but they are very trying. This will be a difficult time for you. Lean on people. I am very independent and have a "i know what i''m doing and i don''t need you to meddle attitude" and it broke me when my mum had cancer. She was diagnosed three weeks after her sister died of cancer. Very tough for mum. I was in college and working full time. And if i had to do it again (praying i will never have to), i would do everything different. Cherish the times you have and sincerely and genuinely take care of her. My mom had hell. Her doctors said she had the worst time with treatment than anyone that they had ever met. And you know what, she had her reconstruction in december. She is healthy, long hair, happy. And she told me that the support i gave her was the help she needed. There is science for cancer, but patients need something for emotional wellbeing too. My prayers and thoughts are with you. I wish i could pm you but i can''t. If you ever need reassurance, or someone to explain anything that seems confusing, let me know

~cellososweet

 

[FireGoddess]

Thanks everyone for your kind thoughts and I hope you all had a wonderful Mother's Day. Mom loved the calla lilies I sent her for Mother's Day and has been reading the books I sent early last week written by cancer survivors with uplifting stories of courage. They have been helping her. She keeps relaying stories to me that end up having come from the books, so I'm happy that she's getting some comfort and knowledge at the same time. Today she gets her portacath put in (basically a surgical procedure to put in an internal IV apparatus so she doesn't have to get stuck every time she goes for chemo), some tests on Wednesday, and chemo starts this Friday. *positive thoughts!!*

Monarch - I hope your practice 20 miles went okay! I was thinking about you this weekend.

Tawn - Thanks for the NYT link. I will have to register and read some of those articles.

Sundial - Thank you so much for your kindness and for thinking of us regarding Mother's Day. It was a little hard but we were all staying upbeat.

Blueroses - Thanks for your post and for your support...and for your hugs.

Mara - Thanks so much, we are absolutely keeping spirits and positivity up for this journey that is about to start this week.

Cellososweet - Thank you so much for your sweet words and for relaying the stories of your family's battles with cancer. I will absolutely take your words into counsel (and will page you on here if I need you!!). I have been guilty of withdrawing somewhat in the 'real world' (which is why you guys are truly so very comforting and supporting to me, please know that) because sometimes I am on a hair-trigger when it comes to welling up and stuff, which I am trying not to do, particularly at work. I am trying to be better about it and now that we know the treatment plan it is much easier for me to talk to people and let them know what's going on. I am definitely going home for the mastectomy and trying to figure out when I should go home during the next 6 months of chemo. I get some comfort from the fact that my dad and sister are there all the time, but I call pretty much every other day.

Thanks everybody.

 

[pebbles]

FG -- I have been MIA lately, but I just wanted to add my support. Two of my girlfriends lost their moms to breast cancer and it is something I think about all the time.

Your mom is going to be in for a tough 6 months. The chemo and radiation is going to make her very tired and there will be days where she will just want to give up. The best you and your family can do is be there for her -- even though you live so far away, you have to be her cheerleader and just be there to listen, even if it is one of those days where she just wants to cry all day. Take it one day at a time.

My thoughts and prayers are with you and your family.

Hang in there. We are all here for you.

 

[FireGoddess]

Thanks Pebbles. I will do my absolute best to be a cheerleader for her. Chemo starts today. I will admit that it has been very hard for me to hear her crying on the phone and to remain calm and positive, but I have done it. I usually end up breaking down as soon as I hang up though. My sister and I will definitely make sure she keeps up the fighting spirit, because a big fear I have is that the road will be long and difficult and she will want to give up, which cannot happen. My mantra is definitely going to be ''one day at a time.'' Thanks again Pebbles.

 

[FireGoddess]

Any of you French speakers or francophiles heard of ENDOBIOGENIE? Good or bad things about it? It is a science of phytopharmacology that assesses the entire body and its systems and gets into herbal treatments and the like. I''m curious about it after reading THIS autobiographical book written by a woman with advanced breast cancer who underwent these treatments in addition to chemo, radiation, etc. Anybody know anything about it?

 

[Kaleigh]

I don''t know anything about it but just wanted to say that I am thinking of you. I am keeping you and your mom in my prayers.

 

[Dee*Jay]

Firegoddess, I'm sure your positive attitude and support for your mom is the best possible medicine. Even though it's so hard on you, good for you for keeping an upbeat attitude when you talk to her.

By the way, my best friend just went through chemo and radiation and it really wasn't that bad (in a relative sense). She did lose her hair and had some days where she was tired, but she was never sick at all. So hopefully your mother's treatment will go just as well.

More big hugs! Keep us posted.

 

[monarch64]

Date: 5/22/2006 5:53:10 PM
Author: FireGoddess
Any of you French speakers or francophiles heard of ENDOBIOGENIE? Good or bad things about it? It is a science of phytopharmacology that assesses the entire body and its systems and gets into herbal treatments and the like. I'm curious about it after reading THIS autobiographical book written by a woman with advanced breast cancer who underwent these treatments in addition to chemo, radiation, etc. Anybody know anything about it?

FG, I had never heard of endobiogenie until you posted it today...I did some limited online research and boy, is my French rusty! Took 4 years in HS and a year in college, but I'm definitely out of practice. Most of the sites I pulled up were in French and I didn't have time to click on many to see if there was an "Anglais" translation/option. I did get the basic idea, though, of what Endobiogenie is...if you can possibly find a support group or something through your own research where Americans are/have used these treatments, I would say try to get more info from someone who's been through it. There has to be a blog somewhere about it. I will definitely ask around my team for this marathon I'm doing and see if anyone's heard of it or has experience with it. Maybe someone I know can point me in the right direction and I can, in turn, help you out.

I really like the idea of supplemental therapies in addition to Western medicine for cancer treatment. I hope your mother will be open to something like that, because I don't think it can hurt, right?

Hope this post finds you in positive spirits...I think of "FireGoddess" from PS and your mom every time I walk...we did 20 miles Saturday and I did another 10 with a couple other diehards from my team on Sunday. So just know positive vibes are being sent your way, as well as your mom's!

ETA: twelve days til the actual event-I'm excited to be part of it!

 

[Lorelei]

FG you will find the strength to be a rock for your Mom, it just comes from somewhere. I know how hard it is but when my beloved Dad had cancer I found I was able to be strong for him even though I was so scared and devastated that the man who had always been so strong for me now needed me to take care of him. You will be able to do it and help your Mom through this. Focus on helping her fight and do take it a day at a time, I am still praying for you both.

 

[hlmr]

Good morning FireGoddess:

I just had a quick look at this website which also has some additional links you can go to.

http://www.eimcenter.com/

It sounds very interesting and everything is worth exploring.

Hope it is helpful.

Heather

 

[movie zombie]

i, too, would definitely look into this. i firmly believe in western technology supplemented with so-called ''alternative'' approaches.

movie zombie

 

[FireGoddess]

Thanks for your thoughts and prayers Kaleigh! I know you are going through your own loss and it is so kind of you to be thinking about us as well. DeeJay, thanks for sharing the story about your best friend. I'm so glad she didn't get sick. Mom is going to lose her hair soon and has felt tired but I think it's so much more survivable if you don't feel nauseous all the time and get the GI distress on top of it. Keeping my fingers crossed. Monarch, when I checked online for endobiogenie the only english website I found was the one Hlmr posted. If you end up figuring out any of the french sites or how to read them in English, I'd love to know! I sent that autobiography off to my mom as soon as I read it because the author has stage 4 metastatic breast cancer and she has beat the odds using the combo of Western medicine and this endobiogenie regime. Her cancer is stabilized. She had to go to France for it but there is now a center in Idaho. It worked very well for her. Great job on your 20 miles. I'm thinking about you! How is your fundraising going? Lorelei I draw strength from your courage because it is quite hard to make the mental transition from your parents being invincible and there to take care of you to you taking care of them, particularly in this sort of situation when you feel they've been dealt an early blow. It has been easier since the battle plan has been in place but you know it's so difficult when they have the emotional breakdowns. Hlmr thank you for the weblink - I sent it to my mom because in reading the book she is very interested in endobiogenie. She asked if she would have to travel to get the treatment and I told her most likely, but at least we're talking Idaho instead of France (although the distractions in France might be more intriguing...)!! MZ, I'm with you. I'm so glad I ended up buying the book and reading about this, because it really seemed to do something. I'm trying to find out all I can from independent sources in addition to the endobiogenie center in Idaho so we can go in with all the info!