Dis Breast Cancer Survivors - GAGWTA!

[Hollyann]

Pea-n-Me - It's been a struggle - you can't help thinking about it at odd times - and it catches you off guard.

All of you ladies show such courage and strength. I've been so lucky with my diagnosis - I can't imagine what you struggle with every day....

It is getting better - I should clarify that she was my step-sister, but we've been a part of each other's lives for almost 30 years. Holidays, birthdays....she always called me "sis". Such a beautiful person. We were part of a large, loving, blended family that really worked! We both lost parents when we were younger and came into each other's lives when I was a teenager and she was a young adult.

I spoke to my mother today (step-mother, but mother just the same) and she tears up and I just wish I could make it all better for her....

However, Judy would have wanted us all to laugh and be happy - as she was. I know that I'm a better person because of her loving example.

Hope ya'll are having a good night - I'm lurking at watching TV!

 

[NHAnn]

(Holly)Ann ~ I am SO sorry about your family's loss and pain

JennyMom... glad to see you here, and hope the medication situation improves for you!

Susan....my re-excision (lumpectomy) was more than 3 weeks after the surgical biopsy. I'm glad you have the trip next week! I too had the DCIS Dx, and was given the option of mastectomy instead of the re-excision w/radiation...but chose the lump/rad...for the technical reason outlined so clearly in Linda's post!

GAGWTA for a good weekend~~

 

[Cruise04]

Hi all - Holly I'm so sorry to read about your sister. I have no words except I'm sorry and I'll say a prayer for your family.

Got my mom's pathology reports today. Very interesting. I'll of course give these to my doctor so she can see them. As I figured, her diagnosis, original, was in her right breast in about the same area that is in question for me. I know that doesn't necessarily mean anything but it's interesting to me.

This is in 1997. Now I know you guys have written things about the ER/PR receptors. On her report it shows those 0 in the unfavorable column. Then there is a line with a pS2 and under the column favorable there is a 2+. I have no clue what these mean. The descriptor isn't that great and I can't find much on the breast cancer research website.

Then under the DNA Cell Cycle Analysis is the most amazing to me - under the DNA Index line the unfavorable column has 1.94 and the range is .9-1.19. Under the % S line in the unfavorable column it is 10.57 and the range is <8%. The descriptor says - "Aneuploid tumors with a high S-phase correlate with shorter disease-free and overall survival" and then there are references to the journals in the 90's. Basically her survival rate was very low it appears. That was her lymph node report.

The diagnosis was Right breast biopsy showing medullary carcinoma. Tumor mass is presenting to very close to excisional margins. I can't find medullary yet but I'm still looking.

Listed in the microscopic exam it states that the tumor was composed of sheets of tumor cells with abundate delicate, basophilic cytoplasm that forms groups of cells. The nuclei are large and vesicular with prominent nucleoli. Mitosis are frequent. There is extensive lymphoplasmacytic infiltrate (which I believe this is about her lymph nodes). There is extensive central necrosis of the tumor mass (dead cells).

Her tumor was 2 X 1.8 X 1.7 cm.

With the second diagnosis in 2001 they removed 5 masses from around her aortic lymph node area. Two were 1 cm and the other three were about .5 cm each. #1 showed metastatic malignant tumor cells that were large. #2 shows nest of malignant tumor cells that were large with numberous mitosis. #3 shows another nest that were large. #4 shows malignant tumor cells that were large. All it shows in the lymph node report for the ER, PR, and HER-2 were 0 in the negative column.

I'm off to do some research and look up some of these words. These are hard to find I'm finding.

Thanks for letting me come here and type this out. I hope I can get a better understanding of some of this as I do some research. I have been so hesitant in getting these and I guess that's why I've waited this long. Now to get the autopsy pathology report. But I know what that is going to say because the oncologist called me when he got the final report. She was totally full of cancer - lungs, abdomen, around her heart. But for some reason I feel better now that I have these. It's like a calm came over me.

Hope everyone has a good weekend.
Chris

 

[MerryPoppins]

Ann, my heart is breaking for you and your family. How tragic! I'm so sorry. Glad to hear from you. I had wondered where you were.

It's so true. Each person's situation is so different. And the chance of recurrence is there no matter what you do. The odds are pretty even between mastectomy and partial with chemo/radiation, from what I understand. I don't think there is ever a right answer for all cases. However, I believe that mastectomy was the right answer for me, in my case. My surgeon told me that she was afraid that other ducts could have cells because I had more than one spot. It wasn't invasive, so I wanted the peace of mind - knowing that they probably got it all. I had big breasts, so that made my chances even better that they'd get clean margins. I think that's the trick, you have to find what feels right in your circumstances and go with it. Whatever you decide, you have to feel good about walking your walk and everyone's path is different.

The job was listed at the air force base today. It'll be up for a week. DH is putting in an application next week. I'm prayerful that this is going to happen. It'll be such a load off our shoulders. I'll let you know when I hear anything.

Chris I'm no help. I'm sorry. Hope someone can help with the report. You remain in my prayers.

Have a wonderful weekend. I'm thinking of you.

 

[Pea-n-Me]

Chris. Medullary cancer is a rare type of invasive cancer that usually carries a more favorable diagnosis. (I believe it the incidence is only about 5%). My cousin had this type of breast cancer. Here's a link:

http://www.genetichealth.com/BROV_Types_of_Breast_Cancer.shtml

 

[laurabelle]

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

I'm going to be on the soccer field early this morning! It's playoffs and I'm hoping we'll end up with a couple weekends off before basketball starts!

Hollyann- I'm so sorry for your tragic loss... your family is in my thoughts and prayers.

Chris and Susan- Here are 2 links that are helpful in understanding your pathology reports: http://psaweb.pcola.med.navy.mil/breasthealth/pathology.html
http://www.breastlink.com/optimal_care/article4.aspx
Chris I'm glad getting that has helped you...

Linda- There sure is alot of soul searching that goes into the surgical decisions...I had bilateral masts but was offered lump/rads. I felt strongly in my heart that this is what I was meant to do...not that I lwas happy about any of it! BTW- my new implants (had them replaced in April) are called cohesive gels, they're like gummy bears, you can cut into them, but they won't leak and they're supposed to be resistant to breakage, so hopefully I won't get a flat!

Jenny- I'm really glad you're eating more, I wish you could keep it down though...any chance the ins. co. will change their mind?

 

[Pea-n-Me]

Those sound like good ones, Laura!

 

[snappy]

Ann, how awful for your family to lose your sister, especially in that way. It sounds like you have a very loving and supportive family, though, that is a real comfort.

Merry, what a good idea about having the nativity story in a Chicken soup book. I'll have to research that, but thanks, I would have never thought of it without your suggestion.

Hi JennyMomRI, I wondered if you still visited our thread since I had not seen you post in a while. Are there any newer meds on the market that might help the nausea? Hopefully you will get relief next week when you see the NP.

Linda, thanks for sharing your story. I love your presentation from the standpoint of a nurse and a survivor. The way you explain the rationale behind your surgery decision is so clear and backed up with research. It is a very personal thing and emotions do enter in but being informed is so important. With full info, you can then go ahead and follow you heart.

I have spent a lot of time this week researching reconstruction, two consults with two, both recommended by the doc who did my mastectomy. My take on this is that plastic surgeons who have been in practice for a while, and therefore have a lot of experience taper off on the amount of reconstruction they do and end up doing more cosmetic work. As they do less, they become less expert, and they are not as up to date on newer techniques. Anyone else who has done this research on reconstruction observe this? The doc I saw Monday is older, now does about 20 free flaps a YEAR, he said a free flap was best for me. His surgical nurse is a friend of mine and tells me he has the best results here. Hmmm. . . I did not really connect with him, I was more unsure after the consult than before. The doc I saw yesterday (Dr, Stephens) is younger, has trained with Dr. Allen, the originator of the DIEP, formerly operating in New Orleans, now relocated permanently in South Carolina. Also, there are still 2 LSU docs in New Orleans that do the DIEPS, both of these docs were residents under Dr. Stephens. Dr. Stephens has done a lot of all kinds of free flap surgeries, did about 100 free flap surgeries in his practice at the height several years ago, now not as many per year. He said he strongly believes one surgery is not the right answer for all women. After he examined me and listened to my concerns about abdominal weakening, he recommended the latissimus dorsi flap with an expander, change to an implant after 10-12 weeks with reduction and lift of my right either at the same time as the implant is placed or later.

I thought alot about the free flap and DIEP flap after the first doc visit. The weakening of the stomach muscle is a big issue with me. I have very relaxed pelvic muscles, prolapsed uterus, bladder, etc. My fear, one that I cannot find addressed anywhere in my reading about stomach flaps, is that this surgery could contribute further to the weakening of my pelvic muscles. I don't want to have reconstruction and then be faced with another surgery very soon after to repair the pelvic muscles (they do this along with a hysterectomy).

Not sure if it was the anesthesia or the couple of pain pills I had after my surgery last May but I still suffered from extreme constipation 9 mos later, which did not help the pelvic muscles one bit. I don't want to compromise my abdominal muscles and Dr. Stephens told me even in the DIEP procedure, the muscle is impacted, which makes sense, it is not removed but it is certain disturbed when the doc goes in to locate the perforator vessels used to reconnect the tissue as a breast.

Anyway, my DH and I could tell that Dr. Stephens is up to date on these procedures. He is constantly refining his techniques, uses alloderm over mesh for trams. His surgical nurse was also impressive. I believe this would be an easier surgery for me, I will not be risking damaging my ab muscle (which I am truly concerned about). My GYN told me last year I really should consider reconstruction but not to do the tram. I think her concern was partly the difficulty of the tram and partly due to my pelvic muscle issue.

I am put off a bit about the implant though that is placed under the latissimus flap. Most women need an implant because there is not enough tissue on your back to make any more than a small breast. In my case, even though I am willing (more like eager) to have a significant reduction on my right breast, because so much tissue was taken with the mastectomy, I am very concave on the left side, almost down to the ribcage.

He uses silicone implants, we talked about it. I did not know the gel cohesive types were available yet, Laura. It seems wierd that you posted about your new ones on the day I realized this may be the surgery for me.
(Thanks for posting this). His surgical nurse gave me her email address and encouraged me to contact her with any questions and of course I can go see him again face to face.

Recovery for this is easier, actually just one overnight in the hospital, a 4 hour surgery, one drain. They are arranging for me to talk with patients that have had this surgery (he does many, many of these at the same time as mastectomy so he is obviously expert at it). He was also recently recommended to me by a surgical nurse who works for the women's hospital here who has worked alongside all of the docs here doing reconstruction, I consider her to be objective for that reason. We happened to have a conversation about it at our kids' Halloween activity last week, she said this is the doc you want. Very fortuitous.

Sorry about again being longwinded, I have not been able to sleep this week thinkig of this. It helps to write this down and get my thoughts organized.

We too have soccer games too today and tomorrow, Laura, also DD10's birthday party Sunday at the skating rink/laser tag joint, followed by dinner at Raising Canes. DH got 4 clubhouse tickets to the LSU game tonight as well,
the kids will have a great time (I will be in hog heaven with the house to myself for hours). Busy weekend.

GAGWTA!!

 

[Hollyann]

Good Morning Everyone!

Snappy - good luck with your implant surgery and decisions. I'll be praying for you...

Laurabelle - your implants sound great. If I had to have them - I would worry about them breaking.

Pea-n-Me - you and Laurabelle always seem to have the right link at the right time! You two must have a treasure chest of valuable links!

MerryPoppins - Let us know how the job goes! I live around a military base (my DH is retired Navy), so I understand how that sort of job hunt goes....I'll be rootin' for your DH!

Cruise04 - your research has been really incredible! I, too lost my DM to cancer, but never thought to get any sort of report. It was almost 30 years ago, so we don't know what the host cancer was. I hope the research goes well. Between that and an awesome doc - you'll be set to battle!

NHAnn - Thinking of you and hope you have a great weekend, too!

Have a great day! I'm off to work....unfortunately, it's my Saturday to work (about once every 5 weeks). My parents just returned last night from Michigan (where the funeral was) and asked for no visitors last night - so I'll run over after work!

Take care!

 

[mickeymost]

Hollyann - how terrible for you and your family. My thoughts and prayers go out to you.

Just wanted to update everyone. The infection doesn't seem to be worse, but no better either. It's rough being in a new environment, no family or old friends as I was always accustom to. One of my new neighbors has been a godsend though, helping me with the kids. My DH is still up north wrapping things up with his job. He'll be back this week though. I'm hoping the new PS will drain the fluid around the implant. I bet there's a good 100cc or so in there, it's becoming rather painful. I can't wait until Wed. That's what sucks about being out of town, my old PS would have seen me the day I called. Oh well, what can you do?

GAGWTA Hope everyone has a great weekend.

Kelly

 

[laurabelle]

~~~***GAGWTA sistas***~~~
Hubby and I watched the cutest movie last night, Fever Pitch! Great for both guys and gals!
Well, one kid's team won, the other lost...so we'll be on the soccer field again next week. I was really hoping to drive out to the mountains...

Kelly- It must be awful being sick in a new place. I'm glad you have a wonderful neighbor who is willing to help. Sending healing prayers for you...

snappy Laurie- The cohesive gels are brand new. A local bc sista and I had been following them for probably a year prior. (we joke that we're groupies! ) They were in clinical trials, but the trial was closed so we couldn't get in. They became available in Jan. Only one local PS does them, he's VERY good, a perfectionist! I love him. Now we're his groupies! They are a contoured shape too, more natural looking than the rounds. I had to do implants if I wanted reconstruction, as I didn't have enough tissue to make two breasts without implants. I had saline expanders placed when I had my masts., and I could have kept them in, but I didn't like them, too high & hard. I called them my Barbie ****s! If I could choose a flap procedure, it would be a DIEP flap. I have a friend who sees the same PS and she had one side done with a DIEP and it's amazing! She had an oopherectomy done, I can't remember if she had a hysterectomy too, but she's never had any tummy or pelvic troubles. The flap procedures are usually one surgery (unless you have both sides done, they always to that in two seperate surgeries) the implants will have to be replaced at some point, they're not permanent. HTH

 

[NHAnn]

Sorry about again being longwinded, I have not been able to sleep this week thinkig of this. It helps to write this down and get my thoughts organized.

Please do not apologize! I love reading when you (and others) "think out loud" here!!! Even if it's not an issue specifically applicable to me currently, I find it SO beneficial, helpful, interesting to learn...both the technical and emotional (for lack of a better word) sides of things on the different decision processes throughout the BrCa journey!!

I smiled at this, laurabelle ~~

Well, one kid's team won, the other lost...so we'll be on the soccer field again next week. I was really hoping to drive out to the mountains...

it brought back many memories of tournament play for DD'sand youngest stepson's soccer "careers" ...wanting them to win but not really wanting them too hahaha Oh and we loved Fever Pitch too, espcially having grown up in the Boston area

Kelly...lots of P and PD to you

and of course..GAGWTA!!

 

[snappy]

I had to do implants if I wanted reconstruction, as I didn't have enough tissue to make two breasts without implants.

Not an issue for me I have lots of tissue, ha!!!

 

[snappy]

. The flap procedures are usually one surgery (unless you have both sides done, they always to that in two seperate surgeries) the implants will have to be replaced at some point, they're not permanent. HTH

One thing I liked about the doc I saw Friday was that he really listened to my concerns, however well founded they are, he did not dismiss them.
I have heard that lots of PS's are jerks, this one is more like a prince.

He also did not sugercoat anything, he was quite specific about the issues about implants (which I already knew about).

I like that I was encouraged to email the surgical nurse with any questions. Little did they realize how persistent I can be.

 

[Pea-n-Me]

You go girls!!

 

[MerryPoppins]

Busy day. Just wanted to stop by and say GAGWTA!

 

[donnabres]

Can't wait until I can have one of the pink ribbons under my name. I have just been diagnosed, 1 1/2 weeks ago. Have spent the last week visiting the surgeon and oncologist, and numerous tests. I will be participating in a trial test of chemo before my mastectomy. I am so overwhelmed. My niece sent me this thread to read.

I couldn't believe that after years of checking the Dis Boards before my 2 Disney cruises, and numerous trips to WDW, I would be checking it out because I have Breast Cancer.

I have only read a few pages starting from the begging, but will eventually read every single one of them. Right now I do feel like I need some support, and somehow my family and friends who have been WONDERFUL, and supportive, but they still don't know how I feel.

Thankyou for listening to me, and giving me a place to vent.

 

[NHAnn]

welcome donnabres Hey, you can have that ribbon RIGHT NOW!! Do you know how to put it in your signature? When I came on line a couple of hours after my appt at which I got the news (almost 6 months ago), Ithe ladies here suggested adding the ribbon to my sig. If the news that you have cancer doesn't kill you, you are officially a SURVIVOR!!
There are many many supportive and knowledgeable ladies here. You will be in my thoughts and prayers!

 

[Dan Murphy]

Donnabres, you are so fortunate to have all these wonderful ladies here for support, they are great. You certainly will be in my prayers, mu best to you in your journey. 's

Oh, and what NHann said is so true, you ARE a survivor, believe it!!!!!

 

[Pea-n-Me]

LOL Ann, so true!

Welcome, donnabres. Sorry you've joined our ranks but if you have to be one of us you are certainly in good company. Hope you can find a little humor and support here, and of course shed a tear if you need to. We've all been there.