Dis Breast Cancer Survivors Part IV - GAGWTA

Hi, PrincessK. I'm a 12-year survivor, and I know what you mean about those letters and "sort of" results that come back. I don't know if this helps, but I've had a number of scares over the years--I like to say that I fail the first scans and tests in every way possible, but when they do the closer look (follow up) I pass with flying colors.

I think they're probably saying that, since they had to do a biopsy, they want to keep a close eye on you. That's no fun, I know. But one of my mantras is "If it's not happening now, it's not happening." You are cancer free right now, as far as they have said. Hold on to that.

We'll be thinking of you.

Thanks, and you're right. No sense living like it's already happened. I've always been a worry wort. I guess I'm going to have to learn to live one day at a time and not project into the future.
 
Anyone been to WDW in early December? We did Thanksgiving in 2002 and it was lovely but too crowded. I am wondering if the first week of December is more laid back?.
Glad its "just" busy! Aw I toyally sympathise with you on ur baby turning 18 :( we have been so busy too, and are taking a mental health break to Disneyland at the end of November. I don't know how WDW compares to DL but at DL the week after thanksgiving is the quietest week of the year, followed by the week before and of course in Feb.... We will be checking out from DL on the 26th and will spend thanksgiving in San Francisco. We are going with our "baby" and her bf who is so awesome and I havent been there with her for 7 years now since she graduated school!! & for hubby its been 11 years! Shocking and not acceptable! We have 2 bedroom suites everywhere except for our 2 night road portion if the trip. We will be doing the Big Sur highway again, Hearst Castle etc. can not wait!!! Have fun planning! :)
 
Thanks Smiley.

Your trip sounds way more elaborate and amazing than what I have in mind. Post pictures though so I can live vicariously.

You and Cheryl take the best pictures, that is after pea n me.

Glad you can share this with your DH and your daughter and her BF.
 
Snappy, The week after Thanksgiving has always been one of my favorites weeks at WDW. The crowds leave after Thanksgiving and the Christmas crowds don't start arriving until the second week of December. It's a great time to see the decorations without fighting the holiday crowds.

Of course, the downtimes at WDW are slowly fading away. :sad: I hope this time continues to be a bit of a break from the huge crowds.
 

I'm back from the doctor. He gave me a copy of my pathology report and it indicated "focal flat epithelial atypia". I tried to take notes while he was speaking but it just went by too quickly. He said it's a pre-cursor to something else which means we caught it super early, if it's anything.

I'm going in for surgery on 11/12 so he can take a larger sample. While I keep thinking how inconvenient this all is and how much the recovery will suck, I am so very grateful that whatever it is, we caught early. I pray it's nothing and remains nothing, not only for myself but for my almost 18 year old daughter who is my best friend and very much a mommy's girl. I don't want her to have to ever deal with this.
 
I'm back from the doctor. He gave me a copy of my pathology report and it indicated "focal flat epithelial atypia". I tried to take notes while he was speaking but it just went by too quickly. He said it's a pre-cursor to something else which means we caught it super early, if it's anything.

I'm going in for surgery on 11/12 so he can take a larger sample. While I keep thinking how inconvenient this all is and how much the recovery will suck, I am so very grateful that whatever it is, we caught early. I pray it's nothing and remains nothing, not only for myself but for my almost 18 year old daughter who is my best friend and very much a mommy's girl. I don't want her to have to ever deal with this.

The news sounds good. I know the idea of surgery is not something you want, but knowing what you're up against will give you some peace of mind. It sounds like you've caught it very early and that is key. It will do no good for me to tell you not to worry, but it does sound pretty positive. Saying more prayers for you!
 
Hi everyone! UTI is cleared up (as far as I can tell) but had a rough weekend. Just not feeling good...slept a lot on Saturday and managed to get out of the house for a bit on Sunday. Stayed home from work yesterday. Had a coughing fit which led to me throwing up my lunch...which was pizza. You can imagine how my throat feels today. Having a hard time finding something to eat. Not sure if I'm feeling bad because of that or if it's the chemo. At work today but I'll be leaving early. I'm so ready for this to be over.
 
A big :grouphug: to all those undergoing testing, procedures, treatment or other procedures. Reading along but haven't had a lot of time to post.

smiley, interesting what your doctor said about triple negative cases. I like hearing positive things like that. It's not the way they've treated me, though. I'm actually 10 years out, and they still want me on a quarterly schedule between my primary care doc, my oncologist, my mammograms and my MRIs, ie so I either have testing or "hands on me" every three months. Don't want this to come across as :snooty:, but my doctors are affiliated with Harvard Medical School (#1), so they are at the forefront of medical information and I am confident they know how to best proceed with the understanding we have currently of the disease process.

I did some more research after your post, and it's not what I'm seeing in the literature, either. Recurrence rates for TN are well documented. (I did have to step away from it, though, because it scares me reading about things that I spent so many years trying to put out of my mind.) Bottom line is that recurrences can still happen with triple negative cases after five years, unfortunately. As the originator of this thread, it's always been of the utmost importance to me that medical information here is accurate. I would just hate to have someone who's TN and 6 years out believe she's completely cured feel devastated and misnformed if a recurrence happens. We've all heard of cases that aren't so rare of breast cancer coming back 10, 15 or 20 years down the road. Unlike some other cancers, there is no real cure just yet, which is why they call it NED, "no evidence of disease". Also why BC is referred to as "The Beast". I do know that they are learning more and more about TN cases all the time, and that what they know currently has it being significantly different from hormone receptor positive BC. All is not understood yet, though, and we're a long way off from complete understanding and completely curative treatment. Things are changing all the time, though. I have an appointment coming up with my own oncologist in a few months. I'm going to see what she says about it, too, and I'll report back here after I do. I know we have other TN posters here, would like them to weigh in with their thoughts as well.

lmp, are you watching the Series? We've been enjoying it here immensely. What an exciting set of games!

We had a short trip to WDW this month. It was so nice to get away for a while, we'd had a rough year with no vacation in quite a while; over a year. We had a nice time. It was hot and crowded, though, and a lot has changed that made for some interesting moments in planning and touring. A lot to think about for future trips.
 
Jill, Hang in there. It will get better!

Pea-n-Me, Thanks for making sure the information posted here is as accurate as possible. My cancer was not TN, but I was told that I was a cure after five years. Thirty years later, the original cancer returned. We can't ever assume we are totally safe. That doesn't mean we should live in fear. It just means we need to take some extra steps to be vigilant.

Well, the radiation is finally catching up with me. My energy level has tanked this past week and my skin is starting to react. It is itchy and irritated. But, only 13 more radiation sessions to go!

Thinking of you all!
 
I know, Peg. You are a good example of why the 5 year thing became thought of as inaccurate years ago. Everything I've ever read and been told has been that it can come back. As a matter of fact, as I've said before, I was given a recurrence rate of 1% per year in the unaffected breast, and 5% per year in the affected breast. They actually said if I lived 20 years, I'd have a 100% chance of recurrence in the affected breast, so I try to stay vigilant about possible problems there - even though it's "messed up" inside from the surgery and radiation and images have to be carefully scrutinized.
 
Hi all!

Its been awhile, but I have posted here a couple of times in the past. I guess I need some encouragement.

In 1997 I was treated for melanoma.

In July 2011, I was diagnosed with both ovarian and uterine cancer. I completed chemo in Feb. 2012.

I had genetic testing done last month and the results were good. Yippee!! I was tested for the breast cancer gene and Lynch Syndrome and I don't have either.

Last Thursday I had my mammogram. I set up the appt. so my mammogram could be read right away. I get VERY nervous having to wait for medical tests. Anyway, the mammogram was read and I was called right back in for another mammogram. That was read as well and I was told I needed an ultra sound. I had that right away. The Dr. came in and said I needed a biopsy. Needless to say I was/am crushed. Dealing with the ovarian and uterine cancer is more than enough.

He was comforting in that he said he was "sure it was nothing" but "it was too small to tell if it was a cyst or not". In the past I have had cysts, that they have me come back in 3-6 months to get re-checked and they have all been fine. I wished that what they are seeing was like that.

I am NOT nervous about the procedure at all. My body has been through so much in the last two years that medical procedures don't phase me at all. What I am VERY nervous about is the results and simply WAITING for the results.

Has anyone ever gotten any idea of what is going on the day of the biopsy or is the Dr. always tight lipped until the official word?

I also think I have heard over the years that a high percentage of people who have biopsies don't end up actually having breast cancer. Is that true?

My appt. is tomorrow at 10:30. I am praying that it is just something harmless.
 
Fortwildernesshome, Over the years, I've had several biopsies that turned out to be nothing. When I had breast cancer the first time, I found a large lump. The second time (after 30 years), it came through the skin in my scar.

In between these times, I had multiple biopsies done on my other breast. Each time, it was very nerve wracking, but turned out to be nothing but calcium deposits.

I know it is very hard. You've been through so much, but try not to stress too much. I'll be saying a prayer for you tonight!
 
Fortwilderness, you are right that a very small percentage of biopsies are positive. Maybe with your history they are just being extra cautious? I will be sending good thoughts your way tomorrow!

Peg, yay for only 13 more radiation days! You are almost there!! :banana:

Jillyb, sorry to hear you are having a hard time. I hope you are feeling better soon.

PrincessK, sending good vibes your way!

Smiley, your trip (again!!) sounds awesome!! We have not spent any time in north Cali, but every time you tell us about it and post pictures I get very inspired! We were talking about maybe planning something over Christmas, I will have to seriously look into it.

Snappy, sounds like you've been super busy! What ever happened with your job?

I've been busy of late with doc and dentist apps. Anybody else have teeth problems after chemo? Seems like I always am needing a crown or something lately - it just won't stop!

Thought I got lucky last week when my primary doc caught a UTI (no symptoms yet) during routine screening for my diabetes....only not so much! Took antibiotics, went back for follow up, and the white cell count was higher than ever. So they did a culture that came back negative for infection (seems to me like they should have done this in the first place?). Anyway, they are now sending me to an urologist. I don't like the sound of that at all......

Went for my two month CT scan today, don't see my oncologist until next week. Last two visits my tumor marker numbers were well above 200 (under 40 normal) but the CT scans weren't showing any changes in the mets. I'm really not feeling very good about things this time.....but, we shall see. I've been surprised before.

And so it goes......

GAGWTA!!
 
Cheryl, Funny you should mention the teeth thing. I've started having some issues with a couple of my teeth. One keeps hurting off and on, so I went to the dentist. He did an x-ray and said there was nothing wrong with the tooth. Yet, I still get occasional pain from it. Now another tooth in that same area is bothering me. Not constant pain, just occasional pain. So, I am in a wait and see mode. Hope that they will calm down over time. I'm also still dealing with the eye thing, although it seems to be less often that I see the flashes. In general, I'm kind of a walking disaster, but at least I'm still moving! lol!

I'm crossing my fingers that your appointments with the urologist and the oncologist go well! Kendall recently had to start seeing a urologist. They thought she had a UTI, but didn't. It turned out that she has bladder inflammation. This is probably related to what they think is developing lupus. She ended up on a pill to reduce the inflammation and the urgency. So far so good. Hope your visit reveals something equally simple to treat.
 
No chemo here, but bad teeth from dry mouth, caused by Sjogren's. I would imagine chemo causes dry mouth too. I use Biotene products, sip a lot of water, floss every day etc etc. My last two years have been clean, no dental work, after some serious peridontal work. I know it sounds weird, but I think my secret weapon is "tooth soap" I use it one brushing a day. Bought it on Amazon.

Keeping you all in thoughts in prayers, hope all the tests come out well.

Booked a flight to central CA in March, only one way so far. No idea if we will go. But Southwest was having a sale! Really want to go back to Northern CA like Smiley.

It's always good to have a trip to look forward to, isn't it?

Annual today with my internist. This will probably start another round of tests and so on. Hoping she has a good rheumy name for me, anyway.
 
fortwilderness - wisihing you all the best today

Lisbet - thinking of you and hoping your surgery goes well:hug: today

PrincessK mom - Glad you are getting this taken care of and wishing you all the best. I am a Jersey girl too! Central Jersey by Rutgers.

Cheryl - sorry to hear you are dealing with all these issues. Wishing you all the best at your appt. next week

Peg - sorry the rads are catching up. Try and rest. Yeah, easy to say right. Hope you can get some relief from the skin issues

Laurie - We will be in Disney Dec. 3-10th. I love the decorations etc. then. If you go to NYC around then, the Rockefeller Tree light up Dec. 4th. the shops at Bryant Park are great. My ds loved them and try to get tickets to the Radio City Music Show. Either FL or NY, you cant go wrong.

Linda - :cheer2: Go Red Sox My family is not happy with me. I am the lone RS person right now. I said , heah we need to support the AL. Oh I am sure your ds would be interested to know that we will be in Disney for the baseball winter meetings. I dont think we will be eating dinner next to Hank Aaron like last time though.

kofslinky - how is the wound vac going? Thinking of you.

robinb - how are the rads going?

Dh is back I am happy. I think I will call to schedule the mammo. Maybe for next friday. That will be 3 medical appts. in a week That is enough for me for sure.

GAGWTA. Thinking of you all:)
 
Linda - :cheer2: Go Red Sox My family is not happy with me. I am the lone RS person right now. I said , heah we need to support the AL. Oh I am sure your ds would be interested to know that we will be in Disney for the baseball winter meetings. I dont think we will be eating dinner next to Hank Aaron like last time though.

GAGWTA. Thinking of you all:)

Well even though I am not an American, I am going for the Red Sox because Ryan Dempster (pitcher) is from right here in our hometown!! He is an amazing guy from an amazing family, who helped out in a big way with the fundraisers held for our four dear grand daughters after their dad, our son was killed. Our daughter in law went to school with him. Anyway, it's been fun watching his career go from a little town in BC Canada, all the way up to the world series in the US!!
 
A big :grouphug: to all those undergoing testing, procedures, treatment or other procedures. Reading along but haven't had a lot of time to post.

smiley, interesting what your doctor said about triple negative cases. I like hearing positive things like that. It's not the way they've treated me, though. I'm actually 10 years out, and they still want me on a quarterly schedule between my primary care doc, my oncologist, my mammograms and my MRIs, ie so I either have testing or "hands on me" every three months. Don't want this to come across as :snooty:, but my doctors are affiliated with Harvard Medical School (#1), so they are at the forefront of medical information and I am confident they know how to best proceed with the understanding we have currently of the disease process.

I did some more research after your post, and it's not what I'm seeing in the literature, either. Recurrence rates for TN are well documented. (I did have to step away from it, though, because it scares me reading about things that I spent so many years trying to put out of my mind.) Bottom line is that recurrences can still happen with triple negative cases after five years, unfortunately. As the originator of this thread, it's always been of the utmost importance to me that medical information here is accurate. I would just hate to have someone who's TN and 6 years out believe she's completely cured feel devastated and misnformed if a recurrence happens. We've all heard of cases that aren't so rare of breast cancer coming back 10, 15 or 20 years down the road. Unlike some other cancers, there is no real cure just yet, which is why they call it NED, "no evidence of disease". Also why BC is referred to as "The Beast". I do know that they are learning more and more about TN cases all the time, and that what they know currently has it being significantly different from hormone receptor positive BC. All is not understood yet, though, and we're a long way off from complete understanding and completely curative treatment. Things are changing all the time, though. I have an appointment coming up with my own oncologist in a few months. I'm going to see what she says about it, too, and I'll report back here after I do. I know we have other TN posters here, would like them to weigh in with their thoughts as well.

lmp, are you watching the Series? We've been enjoying it here immensely. What an exciting set of games!

We had a short trip to WDW this month. It was so nice to get away for a while, we'd had a rough year with no vacation in quite a while; over a year. We had a nice time. It was hot and crowded, though, and a lot has changed that made for some interesting moments in planning and touring. A lot to think about for future trips.

that is good to know! I would certainly rather continue check ups and be on top of things, to catch anything early than to put my head in the sand and pretend I am cured!! Right now being still so early in this game, I easily go into full blown panic attack mode thinking about things and reading online, so I try not to as much as I can, just hear the positive stuff and keep that in the forefront, worrying isn't going to do any good and probably does harm. But yes, vigilance is the key. Maybe he was just trying to pacify me because he could see how upset I was :confused3
Read my message to LMP about the Red Sox! :)
 
Fortwilderness, you are right that a very small percentage of biopsies are positive. Maybe with your history they are just being extra cautious? I will be sending good thoughts your way tomorrow!

Peg, yay for only 13 more radiation days! You are almost there!! :banana:

Jillyb, sorry to hear you are having a hard time. I hope you are feeling better soon.

PrincessK, sending good vibes your way!

Smiley, your trip (again!!) sounds awesome!! We have not spent any time in north Cali, but every time you tell us about it and post pictures I get very inspired! We were talking about maybe planning something over Christmas, I will have to seriously look into it.

Snappy, sounds like you've been super busy! What ever happened with your job?

I've been busy of late with doc and dentist apps. Anybody else have teeth problems after chemo? Seems like I always am needing a crown or something lately - it just won't stop!

Thought I got lucky last week when my primary doc caught a UTI (no symptoms yet) during routine screening for my diabetes....only not so much! Took antibiotics, went back for follow up, and the white cell count was higher than ever. So they did a culture that came back negative for infection (seems to me like they should have done this in the first place?). Anyway, they are now sending me to an urologist. I don't like the sound of that at all......

Went for my two month CT scan today, don't see my oncologist until next week. Last two visits my tumor marker numbers were well above 200 (under 40 normal) but the CT scans weren't showing any changes in the mets. I'm really not feeling very good about things this time.....but, we shall see. I've been surprised before.

And so it goes......

GAGWTA!!

I think I spent about $1200 on my teeth in less than one year after my treatments. We have a plan so that was only 20% so I guess the total would have been $6000 without it! It came on suddenly, all kinds of things at one time and I was worrying it was not going to stop, but once it was all done things have been quiet and stable since last fall. I put it down to the treatments weakening both the teeth and gums, and leaving me open to bacteria attacking, and an extremely dry mouth.
I am still praying hard for you, keep you in my thoughts a lot, and even though your numbers are high, it is so good nothing is showing yet!! I sure do hope you make the trip up the California coast!! you can either go right from LA all the way up the #1 pacific coast hwy. and it is beautiful too, but takes a lonnnng time!! or you can shoot up the I 5 and then cut across to the coast (which takes about 4 hours) and from there go back down to Santa Barbara for a night or 2 and then back up through Cambria and Big Sur right up to San Francisco. Having done both, if I thought I would only do it one time, I would choose to skip that bottom portion. It's so much traffic and really does take so long. But if you have an extra couple of days then do it for sure. I know we wont' ever do it again, we have done that stretch twice, once going south and once north. Now if there are any extra days I would rather spend them actually in Cambria, seeing more of Hearst Castle, up in Carmel and Monterey, or in San Francisco.
FortWilderness.... I am thinking about you right now as I know your appointment was this morning at 10:30 and I'm praying for you to have some good news.
Lisbet too.... prayers for you today.
I find it seems to go in waves here....it seems like a lot of people are having tests, surgeries, problems at the same time, then it all goes quiet for a while. It's awesome to have the support of so many lovely kind caring souls here :grouphug:
GAGWTA
 
Nice to see some of you are rooting for the Sox! I will tell my DS about Dempster being from your hometown, smiley! That's cool! lmp, as a matter of fact, when DS and I were on the elevator at the Dolphin last week, I was saying to him, "Can you imagine if Hank Aaron walked in right now?", remembering your story. :laughing: He is really loving all of this this year now that he can really understand it and relate as a player. We've been watching the games together every night, it's exhausting! Between our trip, the Series, and having two new drivers in the house wanting to drive everywhere :eek: we're beat! It's hard to believe that Obama would pick today to come to Boston as a platform for his healthcare program. Of all days. As if our small streets aren't congested enough with a World Series game going on! The City of Boston has implemented major driving and parking restrictions all over the city between his visit and the game. And yes, I wiill be in the midst of it tonight. :headache: DS's fall team made the playoffs so this weekend will wrap up his baseball season - hard to believe he's been playing since early March, and will even go into November! He's had a great year, though, and played with some great coaches and players, honed his skills and had a lot of fun. We're always a little sad around here when the season ends.
 












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