Dis Breast Cancer Survivors Part II -GAGWTA!

[snappy]

Got the news. . . not what I was hoping for. . .

I really am not surprised. My sister told me what she observed on the magnified films before Gustav hit, that the radiologist pointed out an area or line of something along what looked like a vessel or perhaps milk duct. . .

She decided not to question him so as not to alarm mom, but she did tell me about it.

So I guess I knew but wanted to hope for the best.

Mom could not remember exactly what the surgeon said, other than it was caught early and was not the kind of cancer that spreads. So I am guessing it is DCIS, she remembered only the ductal part. The carcinoma in situ part did not ring a bell, but I guess if you are not expecting it, those particular words would have no meaning.

I am bringing her for an 8 am appointment with the surgeon tomorrow. . . she worked her in so she would not have to wait till Thursday. Mom said she told her that she wanted her to have an MRI and more mammograms.

I'll know more after tomorrow. I have a lot of questions. Y'all know how I am.

Do you think the MRI is to determine the extent of the DCIS, if that is indeed what it is? What else is the MRI for, or do I really want to know? I am going to check out breastcancer.org and my S. Love breast book.

My sister and mom are encouraging me to go forward with the trip, as is DH, depending on what I find out tomorrow morning. I am just not sure how I will feel about that, knowing what might be coming. My sister wants for DH and I to have this chance, as she put it, although it might sound trite, you have to take care of the caregiver, have some light moments, as well as humor. Also, when in the world would we have this opportunity again (maybe 7 years from now when DD12 is graduated).

I feel rather guilty right now for even considering going on the trip. I can also see me being totally preoccupied throughout. My sis said, hey, it is a RFTC trip, and it is, but it is a selfish trip after all. It is what it is.

Sistas, let me know your thoughts. I broke down in tears on the phone with my sister, she was a rock. When I tried to say I am glad I have experience with this in order to help mom through it, I totally lost it. I did NOT lose it with Mom. Not sure how I am going to break this to DD18 and DDS12, REALLY not looking forward to that.

Thanks for listening to me ramble. Any wise words you feel comfortable sharing, please do so.

Thank you all, I could not wait to get home and ask for your input. I was able to finish payroll today in record time (I would ordinarily finish it tomorrow), everyone was on time with their timesheets, I am so grateful to everyone there.

Laurie

 

[jackskellingtonsgirl]

Laurie - I am so sorry.
I haven't ever cried when I am talking to my mom. The night she told me her diagnosis I cried when I told DH. DS knew something was wrong and he came in to see what it was. I just told him "Grandma has breast cancer." He doesn't need all the details and technicalities. If he needs to worry I will tell him to worry. I cried when I told my cousin. But I never cry when I talk to my mom. She doesn't cry, either.
I do think you should go on your trip. You all told me to go on mine, and I did, and it was good. If there would have been an emergency I would have left WDW, but there wasn't an emergency. Go on your trip, soak up some magic, then come home and help your mom get through her treatment. You can do this!

 

[snappy]

I know I can do it, JSK, thanks for the pep talk.

I am one tough cookie, and I have a DH who makes me laugh all the time. We laugh at each other, ourselves and the world. Having a completely cynical attitude has its advantages.

It may end up being about timing.

There is a limit to what my sister can do, as she suffers from constant nerve pain and takes strong meds. She just can't drive in to Baton Rouge day after day. She is offering to come stay with mom and DD12 for the duration and told me her DH is supporting it wholeheartedly.

I just can't help but feel this is taking advantage. I'll see what tomorrow brings.

I do so appreciate your input, Elizabeth. I want to add that I am glad your mom's frame of mind has improved not to mention how she feels. I hope it keeps up.

 

[Sha]

Got the news. . . not what I was hoping for. . .

I really am not surprised. My sister told me what she observed on the magnified films before Gustav hit, that the radiologist pointed out an area or line of something along what looked like a vessel or perhaps milk duct. . .

She decided not to question him so as not to alarm mom, but she did tell me about it.

So I guess I knew but wanted to hope for the best.

Mom could not remember exactly what the surgeon said, other than it was caught early and was not the kind of cancer that spreads. So I am guessing it is DCIS, she remembered only the ductal part. The carcinoma in situ part did not ring a bell, but I guess if you are not expecting it, those particular words would have no meaning.

I am bringing her for an 8 am appointment with the surgeon tomorrow. . . she worked her in so she would not have to wait till Thursday. Mom said she told her that she wanted her to have an MRI and more mammograms.

I'll know more after tomorrow. I have a lot of questions. Y'all know how I am.

Do you think the MRI is to determine the extent of the DCIS, if that is indeed what it is? What else is the MRI for, or do I really want to know? I am going to check out breastcancer.org and my S. Love breast book.

My sister and mom are encouraging me to go forward with the trip, as is DH, depending on what I find out tomorrow morning. I am just not sure how I will feel about that, knowing what might be coming. My sister wants for DH and I to have this chance, as she put it, although it might sound trite, you have to take care of the caregiver, have some light moments, as well as humor. Also, when in the world would we have this opportunity again (maybe 7 years from now when DD12 is graduated).

I feel rather guilty right now for even considering going on the trip. I can also see me being totally preoccupied throughout. My sis said, hey, it is a RFTC trip, and it is, but it is a selfish trip after all. It is what it is.

Sistas, let me know your thoughts. I broke down in tears on the phone with my sister, she was a rock. When I tried to say I am glad I have experience with this in order to help mom through it, I totally lost it. I did NOT lose it with Mom. Not sure how I am going to break this to DD18 and DDS12, REALLY not looking forward to that.

Thanks for listening to me ramble. Any wise words you feel comfortable sharing, please do so.

Thank you all, I could not wait to get home and ask for your input. I was able to finish payroll today in record time (I would ordinarily finish it tomorrow), everyone was on time with their timesheets, I am so grateful to everyone there.

Laurie

Sorry it wasnt the news you wanted. Hope the appt with the surgeon can give you more answers. It is good you are going and that you know some of the questions to ask that she may not.

In regards to your trip.... it is NOT selfish of you! You need to be able to have a way to relax and destress. (this is for all of us who do things like this). Take a look at your lives, you take care of a family maybe, you help with your aging parents, you work... you may have something with your health too... Taking some time to go to a place that lets you forget (possibly) and relax... have fun... or participate in an event that you is special to you..

Please do not feel guilty about something that makes you feel something outside of the normal day to day

 

[NHAnn]

oh Laurie I know you're torn now about the trip, but the news is fresh, let things unfold. You'll know in your heart what's right. What's right for you and DH is important too though. Lots of prayers and good thoughts going out to you.

Laurabelle,glad you're on track for your trip!!

I had sad news this morning....a dear friend died. I had worked with her from 1986-1997...she was like a local grandma to my DD. She retired to Louisville 7 yrs ago to be near one of her DDs. She had smoked for years...though she quit (or cut back) a few times....hadn't smoked the last couple of years but the damage was done. The COPD finally won, she had just turned 69. Her daughter had e-mailed me last week that she was in the hospital, I actually spoke with her late last week and she sounded good (under the circumstances) but took a turn for the worst over the weekend and passed peacefully early this morning, her DD was with her.

On a more positive note...have you guys ever seen/heard of the "Guardians of the Ribbon" from AZ and their PINK firetruck to promote awareness? http://www.pinkribbontour.com/ Their pink firefighter turnout gear was made by a local company (Globe) so a stop here was added to their national tour. I went this afternoon to see it at our local Walmart. Lot of local sponsors including my cancer care center, the local ACS chapter, a mobile mammo trailer from a center about 50 miles from here on the coast, etc. I spoke to a very frightened looking lady who was with one of my support group aquaintances. Turns out the lady was diagnosed 5 days ago. She wasn't sure she should greet the truck with us as a Survivor, so I told her that some people I know have the belief "if the news you've got breast cancer doesn't kill you, you are officially a Survivor!" She chuckled and stepped right up.

GAGWTA!!

 

[CherylDan]

Laurie...sorry about your mom. It sounds like you will be getting more information tomorrow, hopefully that will help with your decissions. I do hope you get to go on your trip - especially since it is sounding like you are getting the support to go from your family. And like JSG said, if there should be an emergency, you could leave. I'm a firm believer in spending quality time with DH, and making the most of the time we have right now, because, well, ya know, it could all change in a heartbeat. Dont feel guilty for investing in your relationship.

Laura, glad to hear your DH is doing well. Your trip sounds great, and I agree about only doing carry on bags......we very very very seldom ever check anything.


Ann....love the pink firetruck! Thanks for the link, I'd never heard of it before. Sorry about your friend.

JSG...that's great that your mom is doing better. The halfway point does make you feel like there is a light at the end of the tunnel. It's still hard, but being able to look ahead really does help. Some days ya just feel so crummy, ya start to think it will last forever.


LOL, about spotting me in the photo with DD. Those darn mirrors!

GAGWTA!!

 

[Pea-n-Me]

Laurie, I'm sorry to hear about your Mom. See how tomorrow goes. Keep us in the loop.

GAGWTA

 

[laurabelle]

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

(((((Laurie))))) I'm so sorry...I kinda knew you were expecting this, but it doesn't make hearing the confirmation any easier. Yes, I would think the MRI is to make sure there is no hidden DCIS. I asked my onc last year about what it shows, since I was wondering about the test revealing anything that might be in my chest wall, not just looking at my implants. She said MRIs show everything. That's why not everyone gets them for screening, there would be a lot of unnecessary biopsies.


I'll echo everyone else and encourage you to take this time for you and your hubby to recharge your batteries. I hope you realize there is no guilt in nurturing your marriage, and yourself. Your sister is right, the caregiver needs TLC too. Don't be afraid to discuss your plans with your mom's dr. My drs. are always asking about what plans I'm making. It's healthy! They encourage it! I know that timing is a concern, but I would bet that all those tests can be run before you leave next week. I've managed more than once to have them work around my plans.

Praying for you and your whole family, that you will be strengthened and comforted...and that your mom is in good hands.

 

[snappy]

Thanks all of you. It means alot to me to be able to come here. I have support coming from all directions. How lucky I truly am!! I will indeed keep y'all in the loop. I am sure this will throw me a few curves that I will need info/advice on.

I survived a tornado!!

In my nightmare last night I did. The house remained intact and we just blew along for miles right above the road. My biggest concern was what was going to happen when the house fell. What a vivid and intricate dream!! I am sure there is some deep meaning here, It was scary and cool at the same time being able to "fly."

My constitution has not been failing me lately. I actually seem to have mastered this getting up early and getting ready to leave the house early.
Thank you salad, pears and plums!!!

 

[jackskellingtonsgirl]

GAGWTA, Ladies!

Ann - I am sorry to hear about your friend. The pink fire truck is very nifty!

Laurie - I have tornado dreams, too, but I have never been swept up in any of them! I will be thinking of you today!

I hope everyone else is doing well!

DS plays drums in the school band. Tonight is their first performance at a football game. Hopefully that will go well. His band director lacks basic communication skills so I never know how much info we are missing.

 

[snappy]

Ann, so sorry about your friend. I have always resented tobacco products and their effects, including my dad.

JSK, hope your son has a good first experience with playing at football games. Our DS20 played in high school and had lots of fun with it.

News from the surgeon, some good some not so good. No invasive cancer found, just DCIS, but the area she removed 7 by 5 by 2 cms had dirty margins on 4 out of 6 sides, so she believes the DCIS is in more than 1 duct system.

She is recommending mastectomy with sentenal node removal as it is impossible to tell how widespread it is, and if she did a lumpectomy at this point along with radiation, the remainder of the breast would have a sizable dent in it. She ordered an MRI, of both breasts actually, to see further into the breasts. What worries her is that the area of calcifications was small but the DCIS much larger so it was effectively hiding. We don't know how much more is hiding.

She recommended a visit with the plastic surgeon (I suggested the one I used and she also works with him alot) if she has an idea she might want it.
The only thing she could have would be an expander and implant at her age.
Mom surprised me by being interested in pursuing reconstruction but she wants it more for comfort and convenience. She swims a lot for exercise and using a prothesis when swimming stinks. I don't think she will even go for a nipple reconstruction, more likely for it to be

So we see the plastic surgeon tomorrow and the MRI is Thursday.

Mom seems ok with it. She was already saying she did not want radiation, realizing that would mean no lumpectomy.

The doc was great, spent almost an hour with us. We even talked Disney ands my mom told her about my upcoming trip and asked if there was time for us to go (she said yes).

The doc told me about her last WDW trip and I offered to bring a pin to her daughter.

I was so surprised about the size of what was removed. The mammogram really did NOT show the extent of this. It is really making wonder about mammograms (she has had digital ones for several years). I guess I will reserve judgment until I see what the MRI reveals but I gotta say from where I sit right now, MRI's seem the way to go.

I am trying to remain upbeat here, and there is much to be thankful for. However, until the path report from the mastectomy comes in, I won't rest easy.

Thoughts, ladies?

 

[jackskellingtonsgirl]

Laurie, I am the least qualified to offer thoughts, but I will offer lots of good wishes and hugs to you and your mom! I hope the MRI holds no surprises. Are you feeling a little better about your trip?

 

[MerryPoppins]

I'm so sorry to read your news, Laurie. But as we know, DCIS is good news (well, compared to what it could be). While I agree that it's troubling that the mammogram didn't show the extent of the DCIS, it did alert them there was a problem. Even mammograms weeknesses seem to catch DCIS pretty early. I know my surgeon said that there was no way to know for sure the extent of the ducts involved. Any left COULD have cancer cells. Of course if they keep watching they'll catch them on another mammogram. Maybe the MRI is the way to go to be more sure? It was never suggested for me...maybe because I chose mastectomy.

I'd also say you should go on with your trip. You'll come back rested, refreshed and ready to help your mom. I'm guessing they won't schedule the surgery that quickly or if they could, putting it off a few days won't make much difference.

My DD was invited to a dinner for National Merit semi-finalists at the University of Oklahoma last night. It was a small, intimate dinner and we enjoyed it. The school rep that sat at our table was a young who is a sophomore at OU. He seemed like a great kid. He's a National Merit Scholar and we had a good time talking to him. He's from Louisiana, and that made me think of Laurie. I asked what town and he told me he's from Baton Rouge. Small world.

 

[Pea-n-Me]

I think the purpose of an MRI is twofold: to see if cancer is lurking anywhere else in the affected breast, and to see if there's any cancer in the other breast - before surgery. That way the decisions can be complete.

The down side is that there can be false positives with MRIs - sometimes requiring further testing and lots of worry. Personally, though, I think they're a good thing so you know just what you're dealing with. (Remember my friend Annie who had two mastectomies 3 weeks apart in the days prior to MRIs?) It's a nice feeling when they come back ok.

Tell your Mom the testing can be long and somewhat uncomfortable - on your belly, breasts in a "hole", arms above head, head on pillow. All you can really do is lay there and try to relax. For my yearly's they do both breasts at once; on diagnosis they'd do only one breast per day, so I had to go back twice. Maybe they wanted to get a more thorough baseline first? You could ask if that comes up.

There has been some controversy about whether MRIs should be the standard of care for yearly testing. I think I've posted some articles here before about it. The conclusion is no, IIR, because of the high rate of false positives, along with cost, and things like availability, skill of radiologist reading results, etc, as well as the fact that mammography has proven itself over time. I'll see if I can pull up an article again.

Ann, I'm sorry about your friend.

Laura I was thinking about your DH last night as I was caring for a man with a history similar to your DH's (only he had a nice head laceration) and who also had negative EP testing and a Reveal monitor placed.

I'm on my work jag so it feels like all I do is work/sleep for several days. Sorry if I missed anyone else.

GAGWTA

 

[snappy]

My DD was invited to a dinner for National Merit semi-finalists at the University of Oklahoma last night. It was a small, intimate dinner and we enjoyed it. The school rep that sat at our table was a young who is a sophomore at OU. He seemed like a great kid. He's a National Merit Scholar and we had a good time talking to him. He's from Louisiana, and that made me think of Laurie. I asked what town and he told me he's from Baton Rouge. Small world.

Small world indeed. I wonder if DD20 (he's a sophomore) knows him.

Man I am drained.

Talking to my sister, we are both wondering about the fact that such a large area of DCIS was hidden for so long.


We are wondering if the tendency for this runs in families. Joan has already had 3 biopsies. Not sure how much closer she could be followed.

Linda, I know you are knowledgeable about gene testing. Does the BRAC genes only contribute to invasive cancer as opposed to non-invasive DCIS?

I need to sit down with DD12 now and talk to her about Grandma. Wish me luck.

Laurie

 

[laurabelle]

Laurie- I was thinking that she may have had dirty margins and yes, it may be latent and more extensive. They would want to double check with MRI and include the other breast. Yes, again, MRIs are not for everyone, they do show everything! I'm not surprised with the recommendation of mastectomy either. Did the surgeon mention if it is ER/PR +?
I'm so glad you talked about the trip and it was okayed! I hope you can enjoy it.

Linda- What a coincidence, poor guy. Hubby still has one more day with his dressing on. I'm interested to see what it looks like.

((((Ann))))) I meant to write earlier that I'm sorry for your loss...

 

[laurabelle]

Laurie- I don't know about the genetic component, but you know where to look: www.facingourrisk.org
I'm sure you will find the best way to tell your daughter. I know my kids have shown such resiliency...

 

[NHAnn]

Laurie ((hugs)) your mom is lucky to have you. My mamm showed a clustered area of calcifications less than 2 cm. The biopsied tissue was nearly 5 cm at it's longest dimension with one small positive margin. The reexcision got clean margins all around. I did consider mastectomy because of the size and of course the nature of DCIS, but the surgeon and onc seemed confident that rads and an estrogen inhibitor would be successful, so once I made the decision I didn't go back and second guess it, and I knew in the clinical trial for the anti-estrogen I'd be followed very closely. (As demonstrated by the biopsy - benign- for calcifications inthe OTHER breast 6 months after finishing rads.). Anyway....some in my shoes would have opted for the mast for peace of mind.....I'm comfortable with it though, and don't think about something lurking in there. We're all different!
As I said your mom is lucky to have you for support and care.

My 40 year old youngest sister apparently has a heart condition and is on a beta blocker. This is the one of my 3 sisters that is not going on the RFTC weekend with us. Anyway, she says it is "supraventricular tachycardia, with preventricular contractions, and a right bundle branch block". Though her BP and cholesterol are greta and her heart is "structurally sound". I may PM Linda the rest of the e-mail and get her thoughts.

My friend's funeral will be Monday, they are bringing her back here form Kentucky to be buried with her DH per her wishes, I am glad we will be able to attend and have some closure here.....

when it rains it pours I guess!!

gagwta!!

 

[snappy]

Thanks, Ann for posting the particulars of your biopsy, Laura too used that word latent, I guess meaning DCIS that is basically hiding and not indicated by calcifications.

I have a feeling I will feel better after we get the results from the MRI she'll have Thursday. Although I will have to say, it won't be easy for mom to be in that position for so long. She had trouble holding still for the needle localation. My sweet sister said she'll go with her Thursday as she is a veteral MRI gal from all her back problems. My sister is deferring to me on the plastic surgeon which is fine with me, I really like that fellow. I kinda miss him and his super friendly but professional nurses.

I doubt mom will choose the reconstruction when she gets the full rundown of what is involved, but I am glad she is at least checking on it. I don't want her to say. . .if only I had. . . no regrets.

Right now I think we are going forward with the trip. Mom will need a good bit of help after the mastectomy, she'll need me more later rather than sooner.

I was so glad I could help clarify stuff with the surgeon for her, get the insurance checked out to see if the plastic surgeon I like is in network for her, and get that appointment made. Getting a date when both docs are available, if she really does choose the expander/implant route will extend this a bit I guess and the darned hurricane has already drawn it out.

OK should I start packing now???

Ann, I upgraded to a full size car about a couple of weeks ago since it was only $5 more. You and your posse still wanna hitch a ride?

Glad you will get to attend the funeral. I do think it helps with closure, although it has been since a short time since you lost your mom, I am sure it will be especially difficult for you. Do you have some other friends going as well?

Your sister's diagnosis does sound troubling, does heart trouble run in your family? Forty seems young to be challenged in this way. I did not realize beta blockers were that strong, maybe they vary. I am on one just for high BP and it has proven effective.

 

[laurabelle]

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

Ann- I'm sorry to hear that about your sister. Do you know how she was dxed? What her symptoms were? She sounds like my hubby, healthy as a horse, low cholesterol, normal BP & heart structure. I'm glad you will be there Monday too. I hope you find comfort and good memories...

Laurie- I've had 4 MRIs and for me the trick is: get comfortable, relax, keep my eyes closed, go directly to my happy place. If you've never heard it, it's really something. She should be given ear plugs, which help, but it's still extremely loud and can certainly be unnerving, especially since she's already in a fragile state so newly dxed. This last time I was getting the giggles listening to some of the different sounds. I pictured monkeys on the bongo drums.
Then I was coming up with different names for MRI... like Monkeys Relentlessly Irritating. Yeah, good times in the MRI machine...barrel of monkeys fun! Again, a warped sense of humor has served me well. I'm sure your sister will have good advice if your mom isn't into the monkey trick. I do also hang with Jesus in there, which always calms me and makes me happy.

You sound like me getting all of hubby's medical stuff lined up, knowing the questions to ask, ect. I'm sure your mom is so grateful for your knowledge of the medical system, it sure can be intimidating.

Now go pack your bags missy! Time to go get you some magic!