Dis Breast Cancer Survivors Part II -GAGWTA!

[grammynelliebelle]

GAGWTA! We arrived in Florida late Sat night after a 16 hour trip. We often stop on the way down but this time we went right through. I only did a little of the driving but enough to let DH get a little rest in between. Our traffic was not bad as we leave very early and like to get through Washington and Richmond by mid morning. Traveling on Sat helps also. Going north looked packed.
We are staying with friends right now and have internet access! Will not have when we check into the rental house, but there is a library nearby that I can use.
Last evening we went to Stuidos to see the Osborne family lights. It was our first time and it is truly amazing! This am we are traveling to Tampa to bring my mamo's, reports etc to Moffitt for review and I have my apt next Monday. I feel good about going. We might head over to the Gulf after the hospital. Think its less than an hour to St Pete Beach or Clearwater from Tampa.
Sounds like everyone had good holidays and are getting back into the grove. We are grateful to be able to get out of the northeast as DH really does not do well with the cold. The only drawback is missing the kids and grandkids, but they will be visiting.
I have been thinking of you all and send wishes to all especially to those experiencing proceedures and appointments this week. Carol (Grammynelliebelle)

 

[laurabelle]

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

arminnie- I'm so sorry you lost your mom to this beast. That's the scary thing for us long term survivors, never being out of the woods... Thanks for the article. I hope the support $ doesn't run out in this economy!

The breast cancer vaccine has been in various trials for a while now. I can recall a few years ago at our local support group a researcher from Hopkins was looking for candidates but they had to have mets, no one else was being considered yet. Here's some more info: http://www.breastcancer.org/tips/immune/helping.jsp

Laurie- I sensed you were in a funk. I'm glad you and your dd are going to WDW! I keep dreaming of a quick trip down, but it's only a dream... I don't have a single duck recipe, but the gumbo sounded so good.

Maureen- I'm sorry your dad was in the hospital, and about your leg cramps. I recently started having cramping, terrible, fingers, toes, legs. I am on so many meds I'm not sure which one to blame. I did manage a long weekend trip alone with my yongest dd when I was in excrutiating pain from Femara. It was not ideal, but I took my time, no choice really, and was glad I went.

luvmarypoppins- My blood work doesn't always jibe with my disease either. My GI doc told me during my 1st visit that I'm a person, not a textbook, so he'll treat me according to my symptoms, not based solely on my test results. I hope your friend will post here on the GAGWTA thread, I barely glance at the CB. Keeping you in my thoughts and prayers...

Ann- Poor Avery! He is a trooper. I hope and pray he heals well.
I'm sorry you are having so much pain. I think being on the AI for even part of the trial has given you a great benefit. I did better on Aromasin then Femara, so that's something to consider. Good luck with the dr. search!

Elizabeth- I'm sad the school break is over today too. My oldest dd's bday is next Mon., but the celebration lasts all weekend. She'll have a sleepover Sat. It's only a few kids, thankfully! Then a family party with cake and ice cream Sunday. I am baking chocolate chip cookies for her to take to her lunch table on her actual bday. That night we are going out to dinner. The Cheesecake Factory just opened in our local mall, so I think that's where we'll go. I have only been once, to one in San Francisco. I can't remember what I had for lunch, but dessert was yummy!

Linda- Those photos are ! Your kids are tough! Sorry you're having insomnia, no fun.
Hubby wants to move forward on our kitchen project. We are going to start on the "cooking" half first. It's a small eat in kitchen, but we don't use it as such. Right now there are only cabinets on half and we put a temporary pantry on the other side. We need to replace the range and refrigerator, put in 5 cabs on that side, then work on the other side. I want to put in a pantry and cabs with 3ft of countertop on the other side. We are going to do most of it ourselves...wish us luck!

 

[snappy]

My mother died of metastatic breast cancer 10 1/2 years ago. She was originally diagnosed about 10 years before that (positive lymph nodes).

My best friend found out that she had breast cancer from a mammogram and when they did follow up tests they found a totally different type of cancer in the other breast (the aggressive kind that does not show up on a mammogram). She is doing great now though.

My sister's best friend is a major breast cancer doc here in town. I have never met her and keep saying that I don't want to meet her! (as it would probably be professionally).

That proposed vaccine might have helped my mother. The University of Arkansas does tremendous research - many thanks to the Waltons among others. Whenever I hear someone bash Walmart I think about how many lives they have saved by upgrading our medical system in the state. It is about a million times better than it was 40 years ago.

Thanks for posting the link about the vaccine. It is good to know that research like this is going forward. Also good to know where some of the big $$ is coming from.

Is the breast surgeon in Arkansas or in New Orleans? I have so many female relatives in New Orleans, so far no one has needed a good breast surgeon, but it always helps to know one. I only know of one in N.O., the brother of one of my Ben Franklin classmates.

 

[luvmarypoppins]

GTAGWTA to all the ladies. Well I took my one ds to the dr. today for a contact lens check. Actually he drove since my van is getting inspected.

So of course I see a Web MD magazine while I am sitting there, so there is an article on ovarian cancer that I might want to read, start fliiping through the pages to get to it and fall over another cancer page. Start to read it and I couldnt believe my eyes!! Its about a guy who has the cancer they think I have. I tell ds to rip the page out etc. He does. Of course, he reads it, I didnt want him to, but he did. This guy has fought for 4 years so far and has had 4 rounds of radiation and 4 more surgeries for all the bone spreads. My ds said I dont like the spread part mom, I said, neither do I. He is in some clinical drug trial. I will have to check into this. Of course he said as my dr. said that this is just a wait and see and watch type cancer. This guy has to go for mris and ct scans every 2 months. Wow,my dr. only said 6 month pet scans so far.

I was talking to dh about the radiation. I have 3 options that I can think of.
1. Go to the university where the surgery will be, closest to my home.
2. Check out the Sloan Kettering Satellitte which is about 30-40 minutes away
3. Go a place that is about 30 min. away and has the Varian Rapid Arc Radiation machine. I read this is the most accurate and best for what I have so you dont damage the eyes,vocal cords, etc. etc.

My head spins. My ins. co. has something called a case manager. I didnt respond to the one the last time, but my friend was telling me she has the same ins. co, not the same plan, but they assigned her one too and she took it this time for her 18 yo dd who might need a heart transplant. I think this could be a 2 edged sword, so to speak. I dont want them knowing everything about me but then they could give advice etc. What to do, what to do???

Littlest ds 17, said to me "mom, if you spend 1 minute crying, then that is 60 seconds less you have to be happy!!. Leave it to him!!!

Hope you all had a great day. I am thinking of Aliceacc and her lst radiation today too.

Dh is spoiling me and taking me out to eat. Heah, this cant last forever, but its good for now. I am not complaining. I did dh laundry and I could hardly breathe etc. Hopefully this will all go away after Thurs.

Blessing to you all.

 

[Pea-n-Me]

Laura, you up?

 

[laurabelle]

Laura, you up?

Of course I am...

 

[laurabelle]

~~~***GAGWTA sistas***~~~
luvmarypoppins- Wow! Talk about Godwinks! I hope and pray this leads you to exactly what you need.

Carol- How did your appt. go yesterday?

 

[snappy]

Laurie is up.

Sick people so I actually AM washing to try and control germ city.

How are the folks at your house, Linda?

 

[snappy]

Littlest ds 17, said to me "mom, if you spend 1 minute crying, then that is 60 seconds less you have to be happy!!. Leave it to him!!!

Out of the mouth of babes, huh? Good that he expresses himself so well.

Thinking of you and all the decisions you must make. Options are nice but so would be some guidance.

Amazing you found that article.

Thinking of you.

 

[luvmarypoppins]

Well I am just beside myself, crying, shaking etc.
The NP from the surgeon called and they just cancelled my surgery. They said they got the one test back,the lovely pee in a jug for 24 hours, this was from Quest Diagnostics who takes forever usually.

The levels were elevated, which could mean a tumor somewhere else, not neccessarily a cancerous tumor since the PET scan did not show that, but it could make your BP skyrocket during surgery so now I have to have a CT scan and an asap visit to the endocronologist on mon. She advised my surgeon not to do the surgery. I have not even met this lady yet, but heard she is really good. They also said this could happen if you take alot of tylenol and I told her I have been taking it alot since my neck has been killing me, So they said the surgery will then be in the next 2 weeks after monday. But I dont know if that will be surgery if it turns out for that tumor or what is in store.

Keep praying.

 

[arminnie]

Is the breast surgeon in Arkansas or in New Orleans? I have so many female relatives in New Orleans, so far no one has needed a good breast surgeon, but it always helps to know one. I only know of one in N.O., the brother of one of my Ben Franklin classmates.

The breast surgeon is in Little Rock. Ben Franklin - I'm impressed!

Ironically I have no friends in New Orleans (and I went to a girl's school) with breast cancer - very thankful. I am 62 and at least 10 of my friends elsewhere have had breast cancer (and all are doing well).

Didn't mean to be downer about my mother dying 10 years after her initial diagnosis. She was 65 and had never had a mammogram (20+ years ago). Her prognosis was not good to begin with, and we were lucky to have the 10 years.

My fear is not getting breast cancer - it is NOT finding out that I have breast cancer. Two years ago I was coughing up blood (pneumonia which I didn't know I had) and had a bad mammogram followed by a bad sonogram. I just lay there thinking oh no - I have breast cancer and it is already in my lungs. I was fortunate that a biopsy proved benign. It took almost 8 months to clear up my lungs - but I was not complaining at this point.

I know those of you that have been through this are best equipped to answer how to help someone - but here is what I have learned from my friends. Rides to the doctor and treatments are always appreciated. I went to stay with my best friend (in another city) after she got out of the hospital when her daughters had to go back to work (also out of town).

Lots of people offered help right after surgery- but it was getting to the doctor for treatments months later when she really appreciated the rides. Even when she could drive - it was sometimes hard to find a parking place and navigate getting to the doctor's office alone.

 

[Pea-n-Me]

luvmarypoppins There are many reasons a 24hr urine can be off. Hold onto the thought the PET was good.

Arminnie, there's no being a downer around here. One of the things that's great here is that we can talk about these things and people understand.

GAGWTA

 

[snappy]

Yea, graduated in 1971 with a lot of folks way smarter than me. Ha!

her daughters had to go back to work (also out of town).

Great suggestion about providing rides. That is a very good one when we have somebody dropping in our thread to ask how they can help someone who has been diagnosed.

I just realized I do have a second cousin who lives on the west bank who just had the mastectomy and DIEP operations in October, right before mom's. She was adopted though so is not actually related.

She was happy with her docs.

Arminnie, if heaven forbid someone in New Orleans needs a recommendation for a doc, please contact me. The breast surgeon I knew is Stolier. I think he is good, but I only met him once when he did a breast cancer presentation where I used to work in the 80's in New Orleans.
And don't worry about posting something sad. I did the same just a couple weeks ago and it ws interesting that most here posted that what I posted showed the spirit of the survivor who fought the good fight (and lost) of breast cancer.

 

[laurabelle]

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

luvmarypoppins- Surrounding you in prayer dear sista...for comfort, rest, hope and healing.

 

[snappy]

Well I am just beside myself, crying, shaking etc.
The NP from the surgeon called and they just cancelled my surgery. They said they got the one test back,the lovely pee in a jug for 24 hours, this was from Quest Diagnostics who takes forever usually.

The levels were elevated, which could mean a tumor somewhere else, not neccessarily a cancerous tumor since the PET scan did not show that, but it could make your BP skyrocket during surgery so now I have to have a CT scan and an asap visit to the endocronologist on mon. She advised my surgeon not to do the surgery. I have not even met this lady yet, but heard she is really good. They also said this could happen if you take alot of tylenol and I told her I have been taking it alot since my neck has been killing me, So they said the surgery will then be in the next 2 weeks after monday. But I dont know if that will be surgery if it turns out for that tumor or what is in store.

Keep praying.

I will continue praying. I hope you get some answers soon. Having things change the day before surgery is a type of torture. I hate this but there they need to get to the bottom of it.

Please hang in there.

 

[luvmarypoppins]

Well the ct scan is today.

I have a feeling there is also something else wrong since the np said oh on monday the endo will be doing "lots" more blood tests. I am hoping she is only thinking thyroid which they said I have had none of. I have to call the ins. co as they want me to do it at the hosp. and I dont think my ins. covers that, only the stupid quest place, sigh, sigh.

I wrote on my other thread, now dh boss is saying stuff like" well, I can see this is going to be taking up a great amount of your time, maybe we should get someone else to do your job, wth?. This guy has no compassion or heart and neither does the bigger boss. He just fired a guy who he said was never around, and his wife is battleling breast cancer too. I know he did have some other issues too. My poor dh is getting slammed as he is suppose to be in California in 2 weeks, right at expected next surgery. I already told him as soon as I am out to go and the 3 ds can work in shifts to take care of me. I really dont want someone else, even someone from church, I am the kind of person who likes to be quiet after surgery, not have any visitors etc.

his type of cancer has so many strange things that can happen , I guess I am just having to see where this goes. The web md article guy was saying this too. I am glad I have alot of faith, it helps alot.

Blessings to you all and thanks for letting me vent to all the sisters here,

 

[jackskellingtonsgirl]

Well I am just beside myself, crying, shaking etc.
The NP from the surgeon called and they just cancelled my surgery. They said they got the one test back,the lovely pee in a jug for 24 hours, this was from Quest Diagnostics who takes forever usually.

The levels were elevated, which could mean a tumor somewhere else, not neccessarily a cancerous tumor since the PET scan did not show that, but it could make your BP skyrocket during surgery so now I have to have a CT scan and an asap visit to the endocronologist on mon. She advised my surgeon not to do the surgery. I have not even met this lady yet, but heard she is really good. They also said this could happen if you take alot of tylenol and I told her I have been taking it alot since my neck has been killing me, So they said the surgery will then be in the next 2 weeks after monday. But I dont know if that will be surgery if it turns out for that tumor or what is in store.

Keep praying.

I am sorry there is so much uncertainty! You are in my thoughts!

Mom has started her lymphedema treatments. Now she appears to have an infection in her thumb, which is making the swelling even worse. They started her on Cipro, so we'll see how that goes. She is still pending approval from the insurance on her radiation. It is so frustrating for her to be having these complications that were probably preventable.

 

[Pea-n-Me]

Ugh jsg

 

[Sha]

Well I am just beside myself, crying, shaking etc.
The NP from the surgeon called and they just cancelled my surgery. They said they got the one test back,the lovely pee in a jug for 24 hours, this was from Quest Diagnostics who takes forever usually.

The levels were elevated, which could mean a tumor somewhere else, not neccessarily a cancerous tumor since the PET scan did not show that, but it could make your BP skyrocket during surgery so now I have to have a CT scan and an asap visit to the endocronologist on mon. She advised my surgeon not to do the surgery. I have not even met this lady yet, but heard she is really good. They also said this could happen if you take alot of tylenol and I told her I have been taking it alot since my neck has been killing me, So they said the surgery will then be in the next 2 weeks after monday. But I dont know if that will be surgery if it turns out for that tumor or what is in store.

Keep praying.

Lots of prayers sweetie!

 

[snappy]

I am sorry there is so much uncertainty! You are in my thoughts!

Mom has started her lymphedema treatments. Now she appears to have an infection in her thumb, which is making the swelling even worse. They started her on Cipro, so we'll see how that goes. She is still pending approval from the insurance on her radiation. It is so frustrating for her to be having these complications that were probably preventable.

Although the lymphedema might have been preventable in her case, I will say some survivors suffer from it for no apparent reason, years later, even if they are careful. Not much to cheer you I know.

It is a lifelong risk thing.

Even with the sentinel node surgery only, you can end up with the swelling.

I remember reading to take precautions but to live your life within reason.

It is judgement calls.