Dis Breast Cancer Survivors Part III - GAGWTA!

[Olallamom]

I am new to this thread.

Keeping my long story short:
My name is Nancy and I am a 44 year old mom of three that was just diagnosed with breast cancer at the beginning of July. It was slow growing invasive ductal.
I am almost two weeks post op from a double mastectomy with reconstruction. It has been an emotional ride.
My pathology report after surgery was a mixed bag. My tumor turned out to be larger than expected. Almost 4 cm and further testing of my sentinal node showed some cancer cells.
I won't see my oncologist for a couple of weeks, so I don't know what future treatment I will undergo.
Currently I am planning a trip to WDW with my 13 year old son. We will celebrate my birthday (Halloween) at the world.

 

[wdw4us2]

Olallamom - Welcome to the thread. You will find lots of support here and a group of people who are here to try and answer any questions you may have. You are now a member of the club no one wants to join. Try to enjoy your WDW and you can focus on your treatment plan after you return home.

 

[snappy]

Olallamom, glad you found our thread. Lisa is right, this is the club no one wants to join, but it is one with lots of members who can offer support, suggestions, and with whom you can share your experiences.

I think it is good that you have a trip to look forward to. I always think that the docs should write scripts for WDW trips. The anticipation can be just as healing as the travel.

Two weeks out from surgery, no wonder you are still on an emotional rollercoaster. I did my reconstruction on a delayed basis. I can only imagine that doing a double with immediate reconstruction is very challenging.

Will you have someone with you when you visit the oncologist? As testing is done, and for the tests you already have taken, including the path reports, ask for copies if you have not already. It is good to have a file with everything.

I see you live in Washington, and you have had node surgery. You might want to request a sleeve for the side you have had node removal on. Even if you had sentinel node surgery, unfortuantely the threat of lymphdema is there due to presssure when flying.

We usually recommend the wedsite breastcancer.org here. It is a great, organized, and up-to-date resource for answerinq questions related to this disease.

I hope you post again. We have a wonderful and caring comraderie here. We have many survivors, but also daughters orf survivors as well as survivors of other types of cancers. The first GAGWTA thread (our moniker coined by Ann which just means greetings and good wishes to all that is useful when giving shout outs to other posters and you don't want to leave anyone out) was started in May 2005. We have a number of us here from the beginning and we welcome new friends who find us.

Please don't be shy.

I will tell you about my journey. I was diagnosed in 2004, when our kids were 8,13, and 15. I had the biopsy right before our youngest's first communion and I scheduled my mastectomy after our 13 year old's gradiation from middle school (big commotion at Catholic grammer schools down here).

I had widespread DCIS which was under the nipple and in the upper outer quadrant, with a small area of invasion (.1 cm). Because the extent of the DCIS was so apparent in the mammogram, the stereotactic needle biopsy was done in multiple areas and we knew what we were dealing with. I have always considered that very thorough biopsy as a blessing that we knew my only option was the mastectomy. Because the DCIS was extensive, the surgeon removed extra tissue I guess, I was very concave afterwards, he removed many nodes, and recommended I opt for delayed reconstruction, I think because he suspected there would be other components of invasion or evidence of cancer in some of the many nodes he removed.

However, only more DCIS was found in the biopsy after the mastectomy, but a lot of it, and no evidence of disease in any nodes.

I was not working at the tme so I had a fairly easy recovery, although the drains were in for an extended period of time. I had large breasts and I had read info that there is more drainage when that is the case.

I have been blessed with no problems with lymphedema, but I am fairly careful with the affected side.

I struggled with whether or not to do the reconstruction, but ultimately realized it was too darn hot and humid in south Louisiana to live comfortably with a prothesis unless you don't have the option of reconstruction. I sought out a good plastic surgeon, and did a free tram flap in 2006, and did a reduction and lift on the other side to be more even. It was big surgery, more difficult than the mastectomy as far as recovery, but easier from an emotional aspect since it was a positive step towards quality of life.

That is all a lot of info, but I think there is something to said about knowing what others' experience.

Do you have access to any local support group meetings? I found my group was very helpful in the first several years, and I remain in touch with several members.

My mother is also a survivor, she was diagnosed in 2008, with a similar situation-widespread DCIS but had no invasion.

I had the BRAC testing several months ago and was negative. I needed to know for the benefit of my children and my sister whether I carried the gene. Now, since I was 50 when diagnosed, my daughters can wait until the regular age of 40 when the would need to start mammograms anyway to do start that business.

Throughout this I have been one of those who does a lot of reading and research, so doing the BRAC seemed right. I am not sure why I waited until now, but when I talked to my GYN at my annual checkup this summer the subject came up and I made an appointment with the female breast surgeon who did my mom's surgery to discuss having genetic testing and she had the blood drawn.

I am glad now I did.

Please post again, and feel free to ask for anything you need.

Laurie

 

[luvmarypoppins]

Olallamom - Welcome, sorry you have to join the club too. I have another type of cancer (thyroid) , but the sistas here have adopted me. They are supportive, caring and have a wealth of information to share.

Please ask anything and even come and vent if you want to (very therapeutic).

Have a wonderful birthday and a wonderful trip to the world. I always find them therapeutic and so look forward to them too. We usually go in May and Nov/early Dec.

Wisihing you all the best.

 

[luvmarypoppins]

Going to church in a minute but...

Sha - thank you for your beautiful heart in supporting the ladies here with your race.

Linda - what do you think about the Red Sox news??

The dryer is fixed, yeah, happy is here again, no clothes line for us, even though ds tried.

I have not been sleeping well at all. I dont know if I need to call the dr. to adjust my med. I think my heart might be racing too much.

We also got a new alarm clock. Dont like it at all. Told dh I feel like I am in Times Square its so bright. I got so desperate I put a sock over it.

Also I am so stressed about the van shopping. Maybe 3 more today and that should be it. The pickings are slim here and the prices are high.

So far we are looking at a stripped 2010 with 35K miles and they will install some kind of backup camera for dh on the mirror? Not the factory one, they cant do that they said. because they cant swap out the radio.

GTAGWTA

 

[snappy]

MaryAnn, hurray for laundry! Did your DH fix it himself?

I wish you luck with the van shopping today.

Sha, how was the race? Like MaryAnn, I thank you for running for all of us.

Can't wait to see the RFTC shirt. Will you let me buy you a meal?

 

[Pea-n-Me]

So far we are looking at a stripped 2010 with 35K miles and they will install some kind of backup camera for dh on the mirror?

No, don't do that! Hold out and you can find what you want! A lot of those are former rentals (which is fine). I held out and found exactly what I was looking for at a price that was what I wanted, too. Just keep looking if you like the bells and whistles!

As for Sox, it's been an interesting few days. As you can imagine (if this happened to the Yankees) it's the talk of the town. I've been listening to talk radio in the car but unfortunatley I've had some long shifts this week so I've missed some of it. But we'll see what happens. I will miss Francona.

 

[Olallamom]

Lisa, Laurie and Maryann,

Thanks for the welcome.

Laurie- thanks for sharing your story.

I haven't joined a support group, but I may in the future. A woman that I went to high school with also went through this similar journey that I am experiencing a couple of years ago. She has been a very important support person to me.
A little bit about myself, I am recently divorced after 23 years of marriage. The divorce has been very friendly. I talk to my ex almost every other day. I graduated from nursing school in June and passed my licensing exam (nclex) in August. YES, this has been the most stressful year of my life!!
This nursing background has been crucial in how I am able to handle the doctors and testing so well. It is great to be able to understand exactly what the doctors are telling me.
There were many options for me, but I decided to take the more extreme route by having a double mastectomy. I am glad I did especially now that the pathology results are back.
My plastic surgeon is one of the few in the United States that is trained to do mastectomy to implants reconstruction in one surgery. So I didn't need expanders.
I knew going into the surgery that the reconstruction was going to be the hardest part. It is amazing how painful the process is.
One of the most difficult parts of this recovery is that I have had to give up running for atleast 6 weeks. Running is my stress releaver, so I am finding myself a bit more irritable lately. My kids and boyfriend are counting down the days until I can start running again. LOL
The trip planning has been a positive distraction. My son is so excited. We will attend a MNSSHP on 10/30. I am letting him come up with our costume theme. This will be my 14th trip to the world and we will be staying at CBR for the first time.
I am trying really hard to not get emotional about this trip. It is weird planning the future when you don't know what the future holds.

 

[snappy]

We have several nurses among us. Good to know more of your story. You sound like as much of a disneyholic as I am.

So you already have the implants in place? That is amazing. My mom was a little old for a tissue transplant so she had a tissue expanded placed. Now she doesn't want to do the exchange and go under general anesthesia again so she is living with the saline permanently. I see some real benefit of a one step procedure. I can see where it would be painful though. So many nerves are impacted. I found the node removal very painful. Do you have. Physical therapist to work with or at least exercises from one?

I think October is an excellent time to travel with the Halloween party and Food and wine.

You sound very well informed. I bet you are a great patient. Sounds like you are very fit too. I think the running you done before cancer will be in your favor. Lisa's and her laps in the pool have helped her physically and emotionally. And hearing about her getting back to swimming laps is an Inspiration to all of us.

 

[Pea-n-Me]

Ollalamom, so sorry I missed your post. (All fired up about the Red Sox saga, lol.)

Welcome to the thread. I am a nurse also and had a similar diagnosis - IDC, nodal pos, triple neg. My initial diagnosis was 8 yrs ago last week. (!)

I'm glad you found us. We have a great group of people here with a wide variety of experiences and we are really good at hand holding prn.

You are going to have such fun at MNSSHP!

 

[Sha]

Ollolamom you will find a great bunch of ladies here. Welcome! Im here as the daughter of a survivor.

Ladies, it was an honor to walk for you all. I started to list you on a paper, but realized I wouldnt be able too as I wrote too big and I hadnt had time to do the ribbons that I thought I would do. I have time now for the next race/walk.

I have another blog from R's cousin Mel. Im in tears. Here is the link.
http://www.warringtonguardian.co.uk/yoursay/blogs/melanie_oneill/9282562.The_Ever_Winding_Road/?ref=fbsend

Im on skype with R now but he is watching his show. This (like you all) remarkable woman, who he loves and allowed me to get to know, who has made an impact on my life by hearing/reading her journey, sharing the support of so many others, and learning something new about IBC that I didn't know... praying that somehow, the right thing will happen. I wish this for all of you every time something comes up. That the best possible scenario will be....

I cant type anymore... my eyes are too tear filled. LOVE YOU LADIES!!!!!

 

[Olallamom]

Having spent a good deal of time this weekend reading through the pages of this thread it has become evident that you all have created quite a wonderful support group.
I am glad to have found this thread.

 

[snappy]

Thanks Sha. You are such a gem. What a heartbreaking post from R's cousin! Thanks for the link.

And thanks for being our cheer leader. Can't wait to see you and give you a big hug.

 

[snappy]

Having spent a good deal of time this weekend reading through the pages of this thread it has become evident that you all have created quite a wonderful support group.
I am glad to have found this thread.

And we are glad you are with us. There is power in numbers. We have some real fighters here. I like that we are from all over the country, the continent really with our Canadian friends. Over the years we have had several posters from Europe as well.

 

[Maridw]

I am the daughter and sister of breast cancer survivors. Actually the niece too. My mom, my sister and my uncle all had breast cancer. My DD recently told me about a music video by Martina McBride.

Here is the link to the video:

http://www.youtube.com/watch?v=ZYNOXRifXKQ&ob=av2e

This is a beautiful video. Hope you all like it.

 

[MerryPoppins]

GAGWTA! Will look at the video tomorrow...it's late and DH is asleep. Welcome Olallamom. Sorry you joined the club, but we're glad to have you. Busy, busy weekend. Can't tell you how glad I am to be back here. Not saying much until I get back up to speed on where everyone is in their journey.

 

[Candy30]

Hi All,

Olla- Welcome! This is the best group of Sistas ever! We welcome you to our group with open arms. Here is where you can whine, vent, laugh, cry and be heard. We listen and go through it all. I hope you have a great time on your disney trip. Let us know if you do a trip report. I love to follow them. Especially when it's one of my sistas.

My mother had breast cancer, and I have B-cell Lymphoma and had thyroid cancer. But the ladies here have wonderfully adopted me.

LMP- I agree to wait. You will find your van. I know it's stressful not having your own vehicle. And the dryer!!!! Lawd! I am glad you were able to get that fixed. This is your third item. They say it comes in threes. First your frig, car and dryer. Done.

Sha- Run Sha Run!!!! Thank you for running for us. We were cheering for you in our hearts. We love you too girl! Mel is in our prayers.

Snappy- Thanks for sharing your story. It's is great to read what others went through. The emotion you go through when you have young children is crazy and at times intense. I could remember thinking am I going to make it see my kids graduate! Or Get married?

Maridw- Thanks for the video link. I will watch it when I get home from work. Sounds like you are a very supportive family member. We need those even though at times we may act like we don't!

Lisa- I hope chemo goes well and side effects aren't too bad! It is nice to have company! When My sister would come we would play card and portable games. It did pass the time.

Patsmom- Howare you doing? Hope you are getting stronger.

Smilie- How are you and rad coming along? Praying for you. Post and let us know how you are.

Merry- Keep posting with us even if you are not caught up. Glad the wedding went well. Sorry about the house. I just had my kitchen done and that was driving me crazy. I can't imagine whole rooms and house!! Are you taking before and after Pics?

Well, my port was clogged on Friday. My DS came to have lunch w me because he got out of school early. He came with me when I went to get my port flushed. He noticed right away that something was wrong. The nurses there loved him! They couldn't believe how big and tall he had gotten. So they gave me medice and I had to go back and get it flushed in 1 1/2 hr. It pays to work in the hospital.

My DD had her 2nd babysitting job and did really well. She was very tired the next morning Looks like my husband will have to switch shifts. But he will have weekends off. So that's a good thing. Not looking forward to the change but what can you do?

GAGWTA!!!

 

[PatsMom]

Good afternoon ladies!

Olallamom - welcome to the survivor's club. Like LuvMaryPoppins, I don't have breast cancer. I have bladder cancer but they let us in the group anyway! Very helpful people here and it is always nice to have someone who understands to "talk" with.

The Red Sox collapsed completely at the end of the season. A disappointment to all of us but a reminder of what being a Boston sports fan is normally like! I only saw the bare bones report on the player who is divorcing his wife who has breast cancer. I know cancer is very stressful on a marriage and maybe it was just the breaking point of an already bad situation. At least I like to think so. Can't imagine what a cold hearted person it would take to dump a person with cancer just because she has cancer.

Treatment three tomorrow and then done for this cycle. I get three months to be cancer free before my next check up. I've gone a year now with no recurrence so it seems like the maintenance treatments are working. I saw a piece on the evening news about a test being developed to detect cancer too small to be seen. One of the problems with bladder cancer is the recurrence. When they resection a tumor there is a possibility of re-seeding. So that is the reson for the follow up. I would be so happy if there was a test that would make the cancer glow like in the piece I saw. At least then I would know if there was a good reason to have to do these treatments.

I am feeling better today, hopefully will get through tomorrow with no issues.

I did hear about the diabetes drug Actos. It has been pulled from the market in a couple of European countries and now has a black box bladder cancer warning here in the US. If that had happened a few years sooner, I would probably have caught the cancer much earlier. I ignored occassional blood in the urine for about a year before the bleeding became so bad it was scary! A year's less growth almost surely would have meant a non-invasive, superficial tumor. I did contact one of the law firms that is "assisting" individuals. I was told I was not a good candidate for a lawsuit because I smoked for a lot of years and smoking is widely regarded to be the cause of most bladder cancers.

LMP - hope you have some good luck finding a van!

Sha - thanks for running.

Lisa - I will also be praying that your chemo goes well. I went with one of my friend's when her husband couldn't make it. Sometimes we would play cards or watch TV, sometimes I would just sit with her and be there for her. She said it seemed to help. Nice to not be alone during those things.

Candy - hope your problems with your port stop!

 

[luvmarypoppins]

Maridw - thank you for sharing the video link. I like the one girl had a cancer sucks tattoo.

smilie - thinking of you and I am sure you are worn out with the long trip you have to endure on top of the rads. Hang in there sista. You an do this!!

Lisa - hope you are resting and recovering from the chemo.

Sha - prayers for Melanie. I am sure her heart is heavy with all she has to consider for sure, but I know she has alot of inner strength that will help her in the journey.

Candy - sorry about your port issues. Looks like your ds had your back. Glad its resolved. Sorry your dh has to switch to the night shift, but I guess in the economy everyone is blessed just to have a job.

Laurie - yes dh fixed it himself. All for $81. So good to have a mechanically inclined dh too.

Linda - yes, a lot of the ones we looked at were rentals, a lot from other states too.

Laurie,Cheryl and PatsMom, Olla - I am sure you are really anticipating your upcoming trips. Do you make adrs, or just do alot of food and wine snacking? I would love to go that time of year. Remember I was thinking about it, hmm maybe next year.

Busy week end. Well PTL I think dh has found the van. I am a little underwhelmed but agreed to it. Its a 2009 with 31K on it, a light blueish color and the thing I dont like is the beige leather seats. I cant imagine freezing or roasting my butt off in it. I love cloth seats. But he looked happy so I said yes and it was over $7K less than a new one and we can use the 7K for a new roof next year. So we are waiting for the guy to call back from the dealer. We put a deposit on it. Its so clean and beautifully loaded inside. Camera, dvd, sirius etc. etc.

I will pray this deal goes through because I am so sick and tired of looking at vehicles.

Please pray for Miss A. She told me our ent surgeon didnt get all her cancer out and is operating on her again next tues. I feel so bad for her going through this again. They have to cut and peel back half her face again I think.

Alyssa had a heart biopsy. She told me they are still waiting for the results. Praying there are no signs of rejection.

Ds23 had a great time in Sleepy Hollow, home of the legend of Ichabod Crane. Thats real NY for you. Saw West Point too he said. Brought us some fresh apples and an apple pie Ds19 is having no luck in volunteering. Even child psych and the reg. oncology floor is full, he is waiting to hear from Ortho and then will take it from there.

GTAGWTA.

 

[PatsMom]

LMP - I have only two ADRs for the entire week! Hollywood Brown Derby because that is a favorite and the fast food at the Studios doesn't do much for me. And Narcoosee's for my late birthday dinner. I wanted to do Citrico's but my daughter is not with us this trip and she would be mad if we ate there without her. Her goal in life is to eat at every restaurant at WDW! So we try to avoid new places when she isn't with us. And on one day that I mostly plan to hang by the pool and maybe visit DTD I have an ADR at the Turf Club. We plan to spend the most time at Epcot, eating and drinking our way around the world! Last time we went to Food and Wine was two years ago and early in the event. So it was miserably hot. Makes me feel like not eating too much and drinking is out of the question! One reason for late October being picked this year!

Glad to see you might have the car. This has been such a PITA for you to have to deal with on top of everything else you have going on!