Dis Breast Cancer Survivors Part II -GAGWTA!

[judithen]

GAGWTA, Ladies!!!

Kirsten, it's my experience that chemo does strange things to your brain. Such as forgetfulness, moodiness and "brain fog" (my oncologist calls it "chemo brain"). It's been 3.5 years since my last chemo infusion and I still have trouble remembering my kids and grandkids names Which BTW they find very amusing as I struggle to come up with the right name...bless them. As for work, it takes me longer because of the memory glitches but at least it's getting done.

I've read that, though your brain may get back to normal, as time goes by, it's not abnormal for 10 years down the road that you still have memory lapses, trouble with names, words etc, and bouts of moodiness.

I'm sorry you were hurt. Whether your mom was speaking out like Merry Poppins suggests or it's a result of "chemo brain", please just love her and keep on supporting her. Both of you, she as a survivor and you as a caretaker, are going through tough times. Try to hang in there.

 

[judithen]

GAGWTA!

jackskellingtonsgirl, back in 1992, I was diagnosed with uterine fibroids...big benign ones. But as I wasn't having problems with them, I rejected surgery. At the time there were only hysterectomy and oopherectomy...no other options. As time went on I had endometrial biopsies...just to be on the safe side...but still rejected surgery.

Well, that changed when I developed breast cancer. The month after my last radiation treatment...the light at the end of the long tunnel...I had another endometrial biopsy. It showed I had a pre-cancerous condition unrelated to the breast cancer. There was no longer any question that a hysterectomy and oopherectomy was needed. So, I did...I had surgery. It wasn't fun and games but it did turn out much more successfully than I expected it to. As I was all ready post-menopausal, there weren't any extreme hormonal changes. But everything healed quicker than I thought it would.

Personally, to have this condition removed, and be one less area that I have to worry could become cancerous, is a relief. But I think NOT having surgery, prior to the breast cancer, was still the right decision for me since the fibroids were benign. And the vast majority of fibroids never become cancerous.

BTW my daughter felt the same way that you do and she was tremendously relieved when I finally had "them out". Glad I could make her happy

 

[jackskellingtonsgirl]

Judithen - My mom has invasive lobular carcinoma, which has a tendency to spread to the uterus and GI tract. She has an area of "thickening" on the uterine wall, at least a couple of fibroids, and at least one large polyp that they already removed. Since she hasn't had her breast surgery they don't know what's up with her lymph nodes yet. Her OB/GYN told her at the very least she will need a D&C, at the most a hysterectomy. Nobody has mentioned what they want to do with her ovaries. She just turned 60 so she is post-menopausal. She has been on Arimidex since the end of March to try to shrink the tumor (it was 3 cm when they found it), which is why they are just now getting around to the surgical consult. On the flip side, if they need to do a hysterectomy and can do everything in one procedure I guess that's better than having 2 major surgeries so maybe waiting will turn out to be a good thing.

I am so glad that your recovery was better than you anticipated! I live in TX and my mom is in KS so I won't be able to help her as much as I would like. Everyone on this thread is awesome, and I am so thankful that I can come here to ask questions or vent my frustrations! Learning about everyone else's experiences is very helpful.

 

[jackskellingtonsgirl]

Merry - I am part of a group like that. We have a master list of names, addresses (optional), phone numbers and e-mails. There are maybe 30 of us who post there, and I have met 8 of the other girls in person. I'll be meeting 2 more on our trip to WDW in August.

I'd be glad to be a part of the group if you decide to put one together.

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Judithen - My mom has invasive lobular carcinoma, which has a tendency to spread to the uterus and GI tract. She has an area of "thickening" on the uterine wall, at least a couple of fibroids, and at least one large polyp that they already removed. Since she hasn't had her breast surgery they don't know what's up with her lymph nodes yet. Her OB/GYN told her at the very least she will need a D&C, at the most a hysterectomy. Nobody has mentioned what they want to do with her ovaries. She just turned 60 so she is post-menopausal. She has been on Arimidex since the end of March to try to shrink the tumor (it was 3 cm when they found it), which is why they are just now getting around to the surgical consult. On the flip side, if they need to do a hysterectomy and can do everything in one procedure I guess that's better than having 2 major surgeries so maybe waiting will turn out to be a good thing.

I am so glad that your recovery was better than you anticipated! I live in TX and my mom is in KS so I won't be able to help her as much as I would like. Everyone on this thread is awesome, and I am so thankful that I can come here to ask questions or vent my frustrations! Learning about everyone else's experiences is very helpful.

jackskellingtonsgirl- I had DCIS, LCIS, Ductal and Lobular Invasive breast cancer, all balled up in a tiny little tumor with 2 lymph nodes positive for cancer. I am sitting here a little shell shocked...It has been a long time since my diagnosis, 12/15/1998...I never knew that lobular breast cancer tends to spread to the uterus and GI tract. I'm a freakin' poster child. Had oopherectomy/hysterectomy in 2005 due to gyn. issues and dxed with ulcerative colitis about 4yrs after breast cancer diagnosis... I guess I've always focused on my bc as a whole picture, mainly being "too young" for it... though I was told by my original surgeon that lobular ca tends to recur in mirror image in the opposite breast, which helped me in my decision to pursue bilateral mastectomies versus lumpectomy/rads...I somewhere, quite honestly skipped the gyn/GI part...my bad. I'm spending a lot of time lately forgetting things...like I ordered a sharps container for my Humira pens and didn't know why the UPS guy was coming to my door...anyway, I'm wondering if I somehow knew this and skipped over it, or what... God has his angels looking out for me either way...
BTW I'm sitting here on 2hrs sleep from high dose steroids, so don't feel bad...

Ann- I'm so happy for your family sista! I'm so proud of your dd! I just know you will have the most magical trip with sweet Avery!

piglet too- I'm sorry you were hurt by something your mom said. Please know that chemo absolutely affects the brain in ways we may never know...

Laurie- Enjoy the BWV sista!

 

[laurabelle]

I've been wondering something lately...and I'm not wanting to pressure anyone. I'm active on another thread, where we all know each other very well. We've all shared email and placed them on a private site. Would any of you be interested in doing something like that? I'd never want to post them here for everyone to see, if you know what I mean. Or even just share them and put them in your contact list on the computer. Anyone interested could email one designated person who then emailed the list out to everyone else. I know there are times when someone is in the hospital or has an emergency...it might be nice to be able to send out the word. I check my email more often than I check the thread. The other reason is that people occassionally disappear from the DIS. Mind you, I'm not intending to disappear, but it'd be nice if it ever happened to one of us, if we could still make contact. I wouldn't know how to reach most of you. Let me know what you think. I won't care if nobody is interested. And feel free to share if you have a better idea.

Melissa- I think that's a terrific idea! I know things have been going on here on the Dis boards. I tend to post here and around the planning boards, but don't hang out on the CB. It's also very easy to start a group on Yahoo. That's where I have my group for young survivors...

 

[Pea-n-Me]

Good idea, Merry.

piglet, I agree, probably a combination of chemo and irritability from the whole process. It's kind of difficult to understand how hard it is and the types of difficult thoughts that go through your head until you live it yourself. I'd probably make her aware that what she said was hurtful while at the same time cutting her some slack. Thanks for being there for her.

Wishing everyone who has trips planned a wonderful time!

Ann, I'm so glad to hear your DD is graduating with such a bang! You must be so proud of her!

I never knew that lobular breast cancer tends to spread to the uterus and GI tract.

That makes two of us. I wonder if this is "newer" information? Because I know I read TONS of literature (and I know you did too) and I don't recall ever seeing that. But there's so much going on in cancer care, especially breast cancer, that it's good we're learning all the time. Great that her care team is right on the ball. JSG, having two major surgeries is huge. I'm not sure what type of breast surgery she's going to have, but if it's a mastectomy and hysterectomy, wow, that's a lot. Lupect/hysterect, less so. Keep us informed.

judithen, you have a lot of good information to share! Glad you're here.

I had a little scare this week when I felt a soreness in my (bc) breast and felt a lump. My heart sunk. (But in the back of my mind I knew I'd just had MRIs in March and all was well.) It became very red, swollen, and painful around the lump and I had to get IV and oral antibiotics. My doc thinks it's an infected cyst because the drainage isn't great since the surgery and radiation. Anyway, it's doing a lot better now, had to go again yesterday for her to check it. I thought I'd mention it here in case it ever happens to anyone else. Kind of scary.

DH and I pulled the kids out of school yesterday and took what we call a "Ferris Bueller's Day Off". After doctor's appt we went and had a fun day together in the beautiful sunshine. After last month (with BIL dying) and this week, we needed it. My doc asked my kids why they were out of school and they told her we were taking a FBDO, and her reply was "What cool parents you have". She doesn't know the half of it. All day we were wishing we were at Disney.

Hope I didn't forget anyone, have a great Memorial Day weekend.

 

[laurabelle]

That makes two of us. I wonder if this is "newer" information? Because I know I read TONS of literature (and I know you did too) and I don't recall ever seeing that. But there's so much going on in cancer care, especially breast cancer, that it's good we're learning all the time. Great that her care team is right on the ball. JSG, having two major surgeries is huge. I'm not sure what type of breast surgery she's going to have, but if it's a mastectomy and hysterectomy, wow, that's a lot. Lupect/hysterect, less so. Keep us informed.

judithen, you have a lot of good information to share! Glad you're here.

I had a little scare this week when I felt a soreness in my (bc) breast and felt a lump. My heart sunk. (But in the back of my mind I knew I'd just had MRIs in March and all was well.) It became very red, swollen, and painful around the lump and I had to get IV and oral antibiotics. My doc thinks it's an infected cyst because the drainage isn't great since the surgery and radiation. Anyway, it's doing a lot better now, had to go again yesterday for her to check it. I thought I'd mention it here in case it ever happens to anyone else. Kind of scary.

DH and I pulled the kids out of school yesterday and took what we call a "Ferris Bueller's Day Off". After doctor's appt we went and had a fun day together in the beautiful sunshine. After last month (with BIL dying) and this week, we needed it. My doc asked my kids why they were out of school and they told her we were taking a FBDO, and her reply was "What cool parents you have". She doesn't know the half of it. All day we were wishing we were at Disney.

Hope I didn't forget anyone, have a great Memorial Day weekend.

I think this must be newer info too. Now I don't feel quite so out of it!

I'm sorry you had that painful scare! Glad you kept that clear MRI in mind...but I know how that is, you still just never know. Glad the meds are working!

Your kids do have the coolest parents! They are learning some really valuable lessons.

Thanks again for your input...you are a fount of knowledge here!

 

[laurabelle]

I just did 4 shots! lol
Here's to a happy colon!

 

[Sha]

Good afternoon Ladies!!! HUGS to all from WDW! Mom and I just got back to the room and are going to rest. We went to tea and missed the rain for either being on the bus or at tea. Had the PLEASURE of meeting Snappy today!!! Will be posting the pics soon I hope! But... I need a nap! I was out late with friend from HS having a drink (3 glowtinis... had to add to my glow cube collection) and then was up earlier than I had hoped. PIXIE DUST for EVERYONE!!!!

 

[klmall]

Hello everyone! I'm new to this thread and after reading many of the posts here I am amazed at the warmth and courage..... it practically radiates right out of the pages!

But back to my reason for posting! Recently, a friend of mine, a 53 year old woman who has always kept up with her mammograms and monthly self-exams found a small lump and some underarm swellings that weren't there a couple of months ago. A biopsy and lumpectomy revealed cancer in 15 lymph nodes which scared everyone to say the least since all this happened so quickly. She starts chemo this week followed by radiation.

She never went for second opinions post biopsy or post surgery and her surgeon attached to a local hospital is offering no support of any kind. We live in the Balto/Washington DC area so there are fantastic medical resources available for second opinions etc.

I gave her boyfriend (a good friend of mine) the names of several groups such as Y-Me etc. to get info from. He says she is really not ready to fight this disease (always been kind of a drama-queen, fussy, high-maintenance type to begin with, 'God bless her') and is very likely to bury herself into her home and fall apart.

She has no family in the area but has several friends and is active in her church.

My question is as a friend what can I do for her?

Thanks!

 

[Pea-n-Me]

Hi Kathy glad you found us.

I was amazed myself how little emotional support is offered at even some of the finest medical centers. And even when it is offered, you have to want to participate.

Getting a diagnosis like this is pretty devastating, and you go through something very similar to a grief process. It takes a while to go through the stages, and everyone's on their own time table. She might still be in the denial/anger stages; in order to ask for support you have to be in the acceptance phase.

For myself, it took several months and a crisis (putting dog to sleep, which sent me over the edge) in order to get me to my local support center. Some people never go. Some people do well with internet support. Some form small groups comprised of a few local people. Etc. She will most likely find what works for her, in time.

What can you do in the meantime? Just be there. And listen. Don't tell her she's going to be fine. Listen to her deepest fears - many of us fear "the worst", especially at the beginning. Offer to go to appointments with her if she wants/needs someone. Send her flowers. If you have mutual friends who also want to help, arrange meal making that she can freeze. Things like that.

She is probably worried about having so many nodes positive. BC is a funny thing in that it is not predictable. Hence, the name "The Beast". Tell her you know someone here who's wife had 11 nodes positive and 10 years later is doing just fine (Dan Murphy). I always found that reassuring. BC is curable in many cases, and becomes like a chronic disease for others. The more you talk to people, the more you hear good stories. But I'm sure she's mainly "hearing" the bad right now.

I'm sure others will chime in. Thanks for being such a caring friend to her.

 

[Pea-n-Me]

Laura, great news!

Sha, hope you're taking lots of pictures and having a great time! How lucky you were to meet snappy!!

 

[laurabelle]

~~~***GAGWTA sistas***~~~

Good afternoon Ladies!!! HUGS to all from WDW! Mom and I just got back to the room and are going to rest. We went to tea and missed the rain for either being on the bus or at tea. Had the PLEASURE of meeting Snappy today!!! Will be posting the pics soon I hope! But... I need a nap! I was out late with friend from HS having a drink (3 glowtinis... had to add to my glow cube collection) and then was up earlier than I had hoped. PIXIE DUST for EVERYONE!!!!

I am so happy to read this!!! Isn't Laurie the best?!? I'm glad you got to meet up with your HS friend too! It sounds like lots of pixie dust is being spread around!

Hello everyone! I'm new to this thread and after reading many of the posts here I am amazed at the warmth and courage..... it practically radiates right out of the pages!

But back to my reason for posting! Recently, a friend of mine, a 53 year old woman who has always kept up with her mammograms and monthly self-exams found a small lump and some underarm swellings that weren't there a couple of months ago. A biopsy and lumpectomy revealed cancer in 15 lymph nodes which scared everyone to say the least since all this happened so quickly. She starts chemo this week followed by radiation.

She never went for second opinions post biopsy or post surgery and her surgeon attached to a local hospital is offering no support of any kind. We live in the Balto/Washington DC area so there are fantastic medical resources available for second opinions etc.

I gave her boyfriend (a good friend of mine) the names of several groups such as Y-Me etc. to get info from. He says she is really not ready to fight this disease (always been kind of a drama-queen, fussy, high-maintenance type to begin with, 'God bless her') and is very likely to bury herself into her home and fall apart.

She has no family in the area but has several friends and is active in her church.

My question is as a friend what can I do for her?

Thanks!

Hi Kathy glad you found us.

I was amazed myself how little emotional support is offered at even some of the finest medical centers. And even when it is offered, you have to want to participate.

Getting a diagnosis like this is pretty devastating, and you go through something very similar to a grief process. It takes a while to go through the stages, and everyone's on their own time table. She might still be in the denial/anger stages; in order to ask for support you have to be in the acceptance phase.

For myself, it took several months and a crisis (putting dog to sleep, which sent me over the edge) in order to get me to my local support center. Some people never go. Some people do well with internet support. Some form small groups comprised of a few local people. Etc. She will most likely find what works for her, in time.

What can you do in the meantime? Just be there. And listen. Don't tell her she's going to be fine. Listen to her deepest fears - many of us fear "the worst", especially at the beginning. Offer to go to appointments with her if she wants/needs someone. Send her flowers. If you have mutual friends who also want to help, arrange meal making that she can freeze. Things like that.

She is probably worried about having so many nodes positive. BC is a funny thing in that it is not predictable. Hence, the name "The Beast". Tell her you know someone here who's wife had 11 nodes positive and 10 years later is doing just fine (Dan Murphy). I always found that reassuring. BC is curable in many cases, and becomes like a chronic disease for others. The more you talk to people, the more you hear good stories. But I'm sure she's mainly "hearing" the bad right now.

I'm sure others will chime in. Thanks for being such a caring friend to her.

Kathy- I will join in with Linda. I actually live in your area. I can totally relate to the fact that although we have some of the best sources for cancer treatment, the support care is something that needs to be sought after. I ended up starting an online support group for young women with breast cancer (diagnosed under age 40) but that was a few years after I went through my treatment. I had support from family and friends and was on the mountaintop spiritually,which is exactly where I should have been, but did not have the support from other survivors...and you know, that was my journey and that was ok. Now I am very involved with other survivors, to say the least. Your friend will hopefully let you know what she needs...again this is an individual journey. As Linda said, just be there for her, ready to lend a hug and a hand.

 

[Sha]

~~~***GAGWTA sistas***~~~

I am so happy to read this!!! Isn't Laurie the best?!? I'm glad you got to meet up with your HS friend too! It sounds like lots of pixie dust is being spread around!

Sha, hope you're taking lots of pictures and having a great time! How lucky you were to meet snappy!!

Good Morning! I wanted to get the couple pics we took yesterday up when we met Laurie...and yes, she is awesome!! I hope to meet more of you since I live fairly close. Have a couple other friends to try and meet up with today... hopefully!!!

My mom (left) and Laurie (right)

Laurie, myself and my mom

Laurie and myself (got her good side and half of my smile... hmmm)

and finally.. my mom and I

other pics from all sorts of things are on believesinfairies.smugmug.com

 

[BeadyLady]

Kathy - if you can - sit with your friend thru a chemo - those are hard to handle- very teary times. and tell her it is ok to have ice cream for dinner if that is what she wants and can eat! This isn't the time to be worried about calories, except if you are not getting enough.

Sha - great pics - lovely women!



Cathy B.

 

[jackskellingtonsgirl]

Laura & Linda - The journal articles I read about the mets to the uterus were from about 2002. Apparently in women who are on Arimidex AFTER their breast surgery if the blood tests still show cancer cells they are often coming from the uterus. At least that was what I gathered. And I did also gather that this finding is relatively new, which was why I was worried that Mom's oncologist wasn't taking it seriously enough. Ductal cancer spreads to bones, brain, and liver. Lobular spreads to uterus and GI tract.

I am at Mom's house now and I have her path report. "Single file (lobular) pattern of infiltration. Intermediate grade nuclei, 2 mitotic figures per 10 high-power fields. Estrogen +, progesterone +, Her2 -." It also mentions a "rare tubule" but we can't find a definition for that.
She seems to be in pretty good spirits, and she understands that the hysterectomy may be necessary so she is thinking about it. I am anxious to hear what they have to say on Tuesday at the ultrasound, but more than likely they won't say anything! We'll have to wait for the radiology report.

 

[judithen]

GAGWTA, Ladies!

jackskellingtonsgirl, that is really interesting. I knew that ductal cancer (which is what I had) would most likely go to the brain, bones and lungs. But I never knew that lobular would most likely spread to the reproductive system or GI tract. It's good your mom has you to research for her.

Pea-n-Me, thank you...especially today when chemo brain is in control. I'm sorry to hear you had a scare. Hope things are back to normal and you're feeling better.

Sha, great pictures...you look like you're having a GOOD time!

And that's it, Ladies. My brain just doesn't want to cooperate...so it's time to call it a day. Besides the kitties want to eat and are in my face to let me know it...God love them.

 

[jackskellingtonsgirl]

GAGWTA!

DS and I are home from our weekend in Kansas. DS has school until June 4 so we had to come back. My mom has her ultrasound today.

Laura - I hope the injections are helping!

Sha - What nice pictures!

Kathy - No advice, but welcome to the thread!

Linda - I didn't know that about Dan Murphy's wife! I hope you are doing well!

I hope everyone had a nice weekend! I have this week and next week off from work, but it seems like my calendar has filled up more and more every time I look at it. Guess it's a good thing I am off!

 

[Sha]

Thanks about the pics.. was wonderful to meet Laurie and had fun! saw 2 other Disfriends on Sunday and just talked for awhile at Pop, which was very relaxing!

I hope to meet more of you are in the World. Everyone have the best day possible!!