Dis Breast Cancer Survivors Part II -GAGWTA!

[jackskellingtonsgirl]

I believe Arimidex in an estrogen inhibitor that is given to women who are post-menapausel. Not sure of its side effects but they all come with some. I am sorry to hear about her diagnosis! But to think positive...her problem is identified and she will now get the best treatment available. All my best to you and your mom! Let us know when you need a shoulder or someone to vent to...the women on this thread are INCREDIBLE (and men, too! )

That's exactly what it is. Hopefully the side effects won't be too horrible because she plans to keep working. She works at a school, so she wants to finish out the school year and then plan her surgery for after school lets out.

The oncologist said they MAY be able to do a lumpectomy depending on how she responds to the meds, but then she would definitely need radiation. If she chooses mastectomy she won't have to have radiation, but I don't think they can say that for certain without knowing what the lymph node involvement is.

She goes Tuesday for her CT and bone scan, so I will be very nervous until those results are back and show that things are all clear!

 

[lookingforward]

That's exactly what it is. Hopefully the side effects won't be too horrible because she plans to keep working. She works at a school, so she wants to finish out the school year and then plan her surgery for after school lets out.

The oncologist said they MAY be able to do a lumpectomy depending on how she responds to the meds, but then she would definitely need radiation. If she chooses mastectomy she won't have to have radiation, but I don't think they can say that for certain without knowing what the lymph node involvement is.

She goes Tuesday for her CT and bone scan, so I will be very nervous until those results are back and show that things are all clear!

All the "Pre-tests" they do to stage the cancer are nerve racking. One thing positive to remember is that if she is not feeling bone pain, lung tightness breathing difficulty, etc. chances are the cancer has not spread and you will get great results. Most cancers that have spread are noticed first by symptoms....so no "news" is good news! Lymph nodes are funny, mine showed no signs of disease by MRI, etc. but I wound up with one sentinal node and one out of 23 axillary nodes positive. IT was a surprise for everyone involved but not the end of the world. It made me a stage 2 as opposed to a stage 1, and with that came the "full monty" of treatment, chemo, radiation, etc. but still has a 85% chance of full recovery... and with tomoxifin/arimidex brings my chances of a recurrance to 13%. Not so shabby...in the cancer world.

I am adding your mom to my prayers immediately and can't wait to hear the good news from her scans, etc. Hang in there....shes on her way to good health and recovery!

 

[laurabelle]

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

Dawn- I'm so happy to read your experience a MSK is so good! Reminds me of when I started and found my cancer center...night and day! I know having that burden lifted made it so much easier to handle everything.

jackskellingtonsgirl- I'm sorry to hear of your mom's dx. I've been on the two other aromatase inhibitors. The worst of the side effects is joint pain, it can be pretty major, lasting for some months. I went on and off it, it was bad for me. My onc convinced me that the huge benefit (something like 40-50% reduction in recurrance rates, look it up) far outweighed the side effects, which have diminished considerably over time.

Still no word from the ins. co. Yes, I've been on Remicade since the end of Aug. 2005, I unfortunately can easily keep track of it because it was during the same time that Katrina hit. I'm on cortifoam, which is keeping me hangin' in there until I get the news. My nurse is calling me daily, she's so sweet. My GI doc would love to admit me, but I'm not going unless I'm really bad, thankfully I'm not at this point. He's also wanting me to go back on Prednisone, but I consider that a last resort...

Easter crowds were crazy! I followed Tourguide Mike's strategies and it was well worth it! I was able to go to the parks during the day, but never did make it out at night, either too tired or UC acting up too much. We had such a magical time! We split our stay between POFQ and Vistana Resort. Both were wonderful in their own way. I think it may have been one of our favorite trips, and mostly it was the little things. We rented a surrey bike at Riverside, what a blast! Watched the afternoon parade at MK and even my kids enjoyed watching the "little" kids' reactions. Fed the ducks at Vistana, named one of them Mr. Hoggie! Ate a delish dinner at CA Grill. Laurie, they changed the spicy sensation sushi, and it's even better if you can believe it! We had the perfect waiter, who replaced my steak halfway through me eating it because hewasn't happy with it, lol! Needless to say we had some wonderful leftovers the next day! We hit the Coach outlet and got some pretty incredible deals! I managed to talk my youngest into riding Space MT. (hasn't done it since she was 6 and swore she'd never ride again!) AND Mission Space...


I wasn't planning on going back this year, had even cancelled the bounceback we booked last fall...but now Disney is getting ready to offer free dining again, and hubby wants to go! I booked a room at WL, only my oldest dd and I have stayed there. We aren't renewing our APs and are trying to save some money, so here's the plan...going 9/27-30 (kids off school!) hubby's bday is 28th. We have to buy a one day ticket for the package, we have a one day water park ticket, MNSSHP is on the 28th so we'll get tickets for that, use the one day ticket for Epcot, F&W festival starts that weekend! Whew! We will have plenty to do without having to buy tickets for everyday. Pretty nice for a budget trip, lol! I need something happy to look forward to...
I'll post some pics from last trip soon. Gotta go lay down...

 

[jackskellingtonsgirl]

All the "Pre-tests" they do to stage the cancer are nerve racking. One thing positive to remember is that if she is not feeling bone pain, lung tightness breathing difficulty, etc. chances are the cancer has not spread and you will get great results. Most cancers that have spread are noticed first by symptoms....so no "news" is good news! Lymph nodes are funny, mine showed no signs of disease by MRI, etc. but I wound up with one sentinal node and one out of 23 axillary nodes positive. IT was a surprise for everyone involved but not the end of the world. It made me a stage 2 as opposed to a stage 1, and with that came the "full monty" of treatment, chemo, radiation, etc. but still has a 85% chance of full recovery... and with tomoxifin/arimidex brings my chances of a recurrance to 13%. Not so shabby...in the cancer world.

I am adding your mom to my prayers immediately and can't wait to hear the good news from her scans, etc. Hang in there....shes on her way to good health and recovery!

She had HORRIBLE bronchitis back in December, and again in February but I think that has resolved. If she is short of breath she hasn't mentioned it. She was having a lot of knee pain a year or so ago but the x-ray didn't show anything. They told her it was probably arthritis. Of course I will spend the next week analyzing every ache and pain she has mentioned, which is pointless.

It sounds like your outlook is very, very good!!

Thanks for your prayers and good wishes!

Laura - I hope the insurance co. gets moving on approving your new UC treatment! DH has UC as well, but his is controlled with Pentasa. Have you (or your Dr.) tried contacting the drug co. to see if they have any sort of "compassionate use" program to get the meds to you for free? It's worth looking into while you wait for the insurance to make a decision.
We stayed at WL last summer. It is a lovely resort! We're going to AKL in August - it is our favorite. I am pretty sure free dining won't start until after we go home, but our TA is watching to see what dates it is available.

 

[lookingforward]

She had HORRIBLE bronchitis back in December, and again in February but I think that has resolved. If she is short of breath she hasn't mentioned it. She was having a lot of knee pain a year or so ago but the x-ray didn't show anything. They told her it was probably arthritis. Of course I will spend the next week analyzing every ache and pain she has mentioned, which is pointless.

It sounds like your outlook is very, very good!!

Thanks for your prayers and good wishes!

Laura - I hope the insurance co. gets moving on approving your new UC treatment! DH has UC as well, but his is controlled with Pentasa. Have you (or your Dr.) tried contacting the drug co. to see if they have any sort of "compassionate use" program to get the meds to you for free? It's worth looking into while you wait for the insurance to make a decision.
We stayed at WL last summer. It is a lovely resort! We're going to AKL in August - it is our favorite. I am pretty sure free dining won't start until after we go home, but our TA is watching to see what dates it is available.

HA! Everyone over 45 has knee pain! I'm sure you mom is fine, don't worry over things that have not happened (this from my oncologist who talks me off the ledge at least once a month!). I went to this conference yesterday and the moderator said to give up 'stinkin thinkin' and my co-worker and I were on the floor laughing our a** off! She said whenever I got morose about the BC she was going to tell me to stop my stinkin thinkin!

Laura, I'm rootin for your insurance company to do the right thing.

 

[jackskellingtonsgirl]

HA! Everyone over 45 has knee pain! I'm sure you mom is fine, don't worry over things that have not happened (this from my oncologist who talks me off the ledge at least once a month!). I went to this conference yesterday and the moderator said to give up 'stinkin thinkin' and my co-worker and I were on the floor laughing our a** off! She said whenever I got morose about the BC she was going to tell me to stop my stinkin thinkin!

Laura, I'm rootin for your insurance company to do the right thing.

I am a champion worrier. I like to think of every possible outcome and contingency, so that no matter WHAT happens I can nod and say "I knew that might happen." I don't like surprises.

My hairdresser (who I adore) told me about this book "The Power of Now" by Eckhart Tolle. I need to go buy a copy. Of all of the things I anticipate happening, only ONE will actually happen so I waste a lot of energy coming up with scenarios.

No stinkin' thinkin'. Got it.

 

[laurabelle]

I'm sorry your hubby has UC too...I've had it for about 5yrs now and have been on just about every drug there is. Unfortunately I've only had a few short remissions. I know there are lots of people who have great control with meds. I hope that continues for him.

Humira would actually be cheaper than Remicade. I (wrongly) got a bill for it recently...$7000+/month. I told my kids they'll need good jobs with great ins. when they grow up!

I don't worry too much... I tend to expend my energy planning trips to WDW! I talked hubby into staying at Pop. He's such a snob, and doesn't really want to stay there, but it's 1/2 the cost of WL, and for a short stay I think it's great.

 

[jackskellingtonsgirl]

I'm sorry your hubby has UC too...I've had it for about 5yrs now and have been on just about every drug there is. Unfortunately I've only had a few short remissions. I know there are lots of people who have great control with meds. I hope that continues for him.

Humira would actually be cheaper than Remicade. I (wrongly) got a bill for it recently...$7000+/month. I told my kids they'll need good jobs with great ins. when they grow up!

I don't worry too much... I tend to expend my energy planning trips to WDW! I talked hubby into staying at Pop. He's such a snob, and doesn't really want to stay there, but it's 1/2 the cost of WL, and for a short stay I think it's great.

DH first stared having UC symptoms about 17 years ago. It took awhile before it got bad enough for him to go see a Dr. He was on sulfasalizine and cimetidine for awhile, then he stopped taking those and did OK for awhile. When it flared up again they put him on the Pentasa. If he notices the symptoms worsening he can up the dosage and luckily it usually brings it right back under control.

Insurance is so frustrating.

Our current trip has been planned within an inch of it's life. I have booked and rebooked and changed things around and then changed them again. I think I have exhausted the possibilities until AP rates come out.

We LOVE Pop, and DH likes to stay there. The problem is fitting the 2 of us and DS12 into 2 double beds. DH and I don't fit very well into one double bed, and trying to share a bed with DS is a nightmare. He is all sharp and angular and pokey, and some part of him is constantly jabbing me if we are in the same bed. The queen size beds work so much better! And in December we got freebie bunk beds which was really cool!

 

[lookingforward]

I loved POP but those beds are small! I loved the resort, though, and the food court was fun. When is free dining coming out???????????????????????????????????????????????????????????????????????????

 

[jackskellingtonsgirl]

I loved POP but those beds are small! I loved the resort, though, and the food court was fun. When is free dining coming out???????????????????????????????????????????????????????????????????????????

Well, if you listen to the rumor mill, Monday will be the release for Disney Visa cardholders, and Thursday for general public. At least one rumor has it starting August 30, which means we will miss it for the third time in 4 years.
We did manage to get in on it last year but I don't think we actually saved any money after we paid rack rate for the room.

 

[piglet too]

Taking my Mom to go get her hair cut. Well actually shaved. It is so hard to hear her crying on the phone. To her this is just one more thing that is making all of this real. I am glad that she feels comfortable asking me to go with, seeing as both of my sisters are at work and my Dad just tells her it is "no big deal." I know he is trying to make her feel better, but she says that "of course it is no big deal to him, guys are allowed to be bald."

 

[Pea-n-Me]

Losing their hair is one of the hardest aspects of treatment for many women. I know it was devastating to me, as I'm a "hair person". The good news is it does grow back, sometimes better than before. Thinking good thoughts for your Mom.

 

[Pea-n-Me]

I was thinking of all of you this week. I'm sharing because it might help us keep things in perspective about our own cases.

I took care of someone with a very difficult case of BC this week. I can't go into detail but suffice it to say, she never sought medical care for breast changes. No regular mammograms. I had to change the dressing and when I did, my knees went weak. I felt so sad for what could have been, as the news was dismal.

Let's never stop spreading the word about the importance of breast self exams, mammograms and early detection and treatment. Think of how fortunate we all are to have found our cancers early.

 

[MerryPoppins]

My grandmother's sister died of breast cancer before I was born. She is the only other person in my family that I know of that has had breast cancer. She noticed changes, but lived in denial. She didn't tell anyone and didn't go to the doctor. By the time she finally realized that she had a real problem, she was afraid to go to the doctor. By the time she told my grandmother, part of her breast was black. I'm not sure what type of treatment she had ... probably surgery (if anything) and not much else. My Nanny was gone by the time we found out I had breast cancer. I'm glad, because she'd have been sure that I was going to die. My mom was bad enough, since she remembered losing her aunt.

I find it amazing that our outcomes were so different. We caught mine early, and here I am 6 1/2 years later. My great-aunt didn't last very long. Medicine has come a long way. But part of it is still going to the doctor and being pro-active.

Kirsten, hang in there. I'm glad you're there for your mom. Try to get her to focus on the outcome. Each treatment, each step, is one step closer to being well. Has she got some soft hats and a wig? I know money is a worry for her, but some agencies help with wigs for cancer patients. I'm sending both of you a big because I know today will be difficult.

 

[Pea-n-Me]

That's not unlike the case here, Merry. Things kind of snowball, and for someone who's fearful, it just becomes a vicious cycle. The strange part was, the last time I had a situation like that, it was in the same room, same bed. Of course, that was before my own BC, so although it was hard to see then, it didn't have the personal impact that this one did. I kept thinking, this could have been me had I let it go. I actually thought about women of previous generations who didn't have the luxury of mammograms and all the other modern things we have today. What must it have been like for them? There was someone famous, I can't remember who right now, who died of BC in the 20's or 30's. I can't imagine, and it shocked me to learn of it not too long ago.

 

[piglet too]

Back from being out with my Mom. She choose to get a real short cut, even though she said it would fall out too. Her wig (she has two of them, free form the ACS) looks great on her. It is very close to her hair color and is in a similar cut. It was tough, she almost cried. She also would not look in the mirror, so I am sure that will be tough when she does. Her order of hats should be here on Monday she said.

Ever since my lump scare, I make a point of doing an exam twice a month. My breast change so much, that even the radiologist who did my u/s suggested that I do so until I really learned the differences. I think I know them now, but I'd rather "over do" it. I feel sorry for people who are so scared to admit that they are ill, because it seems early detection does so much.

 

[lookingforward]

Kirsten, glad you could be there with your mom! I cried when I had my head shaved. My friend from work went with me and my family...but only my friend watched them shave. I closed my eyes and the hardest thing was to open them up and look. I was surprised at my head, it was actually not so bad. But a rough emotional day for sure!

So sad about women who get scared and do nothing. I have spoken with some thirty something women who should be going for a baseline mamogram and don't. 40 is TOO old for the first one, but insurance companies have us convinced it's okay. In my local support group most of the women are in their 30's and some in their 20's! They often are diagnosed on that first mamogram. Sad.

 

[MerryPoppins]

I agree. My doctor told me that most women have cancer for several years before it's found. The survival rate is great now compared to what it used to be. Can you imagine what it would be if they found breast cancers earlier? I can't tell you how many women I've met since mine was diagnosed at 40, that found out they had cancer at their baseline, too. I know young women have dense breasts, but since they're finding cancer in younger women, they need to look at screening the under fourty woman.

 

[laurabelle]

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

piglet too- Good for you for being proactive! I know the support you're giving your mom not only means the world to her, but is an incredibly powerful weapon in her fight!

Linda- I'm sorry to hear about your patient...I think you are so spot on. Getting the word out, not only about early detection, but what going through treatment is about and not being ashamed to share and call ourselves survivors will help other sistas after us. Thankfully there are lots of us! We've come a long way in that, but we haven't finished yet...

Now the free dining rumor leaked from a travel agent has it starting Aug 24 and ending Sept 20 which will not work for us.

I don't have any good news yet about my insurance approving the new drug that my GI doc wants to put me on. He called me last night and said he will fight them for me, and is giving me some other drugs in the meantime, but nothing is fast acting, most take a few weeks/ a month to start working... except steroids, which I loathe and even they might not work. I am going to update him on Mon. and if I'm the same or worse I have to start prednisone again. There is no telling how long the ins. co will drag this out. He keeps asking me if I want to be admitted, but I don't feel that sick yet, though I could turn that corner any time. I DO NOT want to cancel my SIS meet trip!!! It's only 3 weeks away...Last night I had to skip my good friend's surprise 40th birthday party, and I was sooo looking forward to it. But I refused to feel sorry for myself, I had to cancel and that's that.
Grrr. I hate this.

 

[lookingforward]

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

piglet too- Good for you for being proactive! I know the support you're giving your mom not only means the world to her, but is an incredibly powerful weapon in her fight!

Linda- I'm sorry to hear about your patient...I think you are so spot on. Getting the word out, not only about early detection, but what going through treatment is about and not being ashamed to share and call ourselves survivors will help other sistas after us. Thankfully there are lots of us! We've come a long way in that, but we haven't finished yet...

Now the free dining rumor leaked from a travel agent has it starting Aug 24 and ending Sept 20 which will not work for us.

I don't have any good news yet about my insurance approving the new drug that my GI doc wants to put me on. He called me last night and said he will fight them for me, and is giving me some other drugs in the meantime, but nothing is fast acting, most take a few weeks/ a month to start working... except steroids, which I loathe and even they might not work. I am going to update him on Mon. and if I'm the same or worse I have to start prednisone again. There is no telling how long the ins. co will drag this out. He keeps asking me if I want to be admitted, but I don't feel that sick yet, though I could turn that corner any time. I DO NOT want to cancel my SIS meet trip!!! It's only 3 weeks away...Last night I had to skip my good friend's surprise 40th birthday party, and I was sooo looking forward to it. But I refused to feel sorry for myself, I had to cancel and that's that.
Grrr. I hate this.

Gosh, I am so sorry you are waiting for approval. It should be a NO BRAINER, since otherwise you might go in hospital and that will ultimately be MUCH more expensive. I am keeping my fingers crossed. I'm so sorry you had to miss your friends party.

I had a bad day yesterday. I went to get my drug levels checked since they have me on cumidin (SP?) and I was so tired and my stomach hurt and I was in the blood room where the techs draw everyone's blood and all the other people there were old. Anyhow, I just started shaking and crying silently and I couldn't stop. This old man sitting across from me had this sad look on his face...I must have been such a sight. I just lost it. A total pity party. They quickly ushered me into a room and my nurse practictioner talked me off the ledge. I LOVE her. But it was a tough day. I am really at the end of my rope with the chemo. ONE MORE!