Dis Breast Cancer Survivors - GAGWTA!

[scrappinmom]

I told someone on the community board to come see us. She's having a bit of a scare. She went for her baseline and got called back and back again. She's understandably worried so I told her to come here. She is a bit afraid that with the news about Lisa she might be intruding I think? I'm hoping she'll come so we can offer her some support.

That would be me - I"m here.. Hi ladies...yes I'm a little freaked right now...I went in last Friday for my baseline mammogram ( I just turned 40). got called back for a second diagnositic mammogram, got called back for an ultrasound, got called back for a second ultrasound, and today was referred for a core biopsy. What they have found is a 1 1/2 centimeter lesion in my left breast. Maybe some of the terms will make sense to you, they said it was not a solid mass, that it was not palaptable (that means you can't feel it right?).

What can I expect on Monday? I am very nervous. Everyone keeps telling me that in most cases it turns out ok, Howver, I've never been one to like the law of averages. I always seem to be on the other end of them. My second baby, my son, died after 2 days of a rare lung abnormality...even though he was a 40 week pregnancy....so I'm not big on %

 

[snappy]

Yes, palpable means your doc (and you) can feel it. Because they can be felt the docs can do a needle biopsy. In your case, they can do a core needle biopsy using either xrays (stereotactic) or ultrasound. This is essentially a larger needle guided by a computer and xrays or ultrasound. Core biopsies are less invasive than a surgical biopsy, where you are under general anesthesia in the OR. With a core biopsy you only have a local anesthetic. There is a special table in the radiology department, and the techs take mammograms to pinpoint the area. After you are situated on the table on your stomach, the radiologist uses the biopsy device to take a number of tissue samples through a small incision. If the incision is small enough, you won't need stitches, just a small bandage. They also do an xray afterwards to make sure they took out what they were looking for. You put pressure on the area afterwards, they gave me an ice pack to hold on it until I got home. It will be a little sore, maybe a small bruise.

I felt shaky afterwards, I think due to being scared. My mom was with me and drove home, I think it is a good idea to have someone with you.

Be sure and ask how long it will be before you receive results. In my case I had results the evening of the next day (the surgeon who ordered the stereotactic core and who ultimately did my cancer surgery called me at home personally). Be sure to ask to be called at home if that is what you want. Some docs might have the practice of telling you face to face.

I would also request a written copy of the pathology results.

Good luck, I hope you can relax somewhat this weekend. Please update us and let us know how you do Monday. We will be here to listen.

 

[Pea-n-Me]

Glad you came by scrappinmom. At least we've all been through this, too, so know how difficult it can be. Come by anytime if you need support.

they said it was not a solid mass,

Did they feel it was fluid? Or not a mass at all? I suppose I'd be optimistic if it was not a solid mass, not sure without knowing the details. Usually they can tell if it's fluid filled, like a cyst. In my case they knew for sure it was a solid mass because of the characteristics on the mammogram and ultrasound (although I once had a "scare" where they thought I had a solid mass turned out to be just a premenstrual change in the breast tissue). Have you had any other problems with your breast such as redness or skin changes?

 

[scrappinmom]

Nope no other issues & I've done self exams for at least the past 15 years...in fact when I worked for Cigna...I TAUGHT others how to do the self exams with the fake breast! WHat my doctor said exactly what that it "didn't appear to be a well organized mass, and didn't appear solid." but she didn't really say anything about fluid.

Could the large amounts of caffiene I drink & have drank for most of my life affect the results? As hard as I try the only time I have even gone without is for my 3 pregnancies...and the second they were born...all 3 of them..."give me a starbucks latte please"! I know it's bad...but I can't help it.

I guess I'm glad they're doing so much...and I will sure have a very clear baseline.

snappy, I"m glad you mentioned feeling shakey...my dh is going to come with, I was originally going to tell him no, but now I think I'll let him. They said I should have the results in 3-5 days & thanks I will ask to be called at home as soon as possible.

The ladies here are simply amazing....Breast Cancer has always been "just" a charity I generously gave to every year...sponsored 2-3 avon walkers a year...It has not truly touched my personal life yet...I have read thru your stories and researched online and read more stories...I feel honored and blessed to have you on my side. Thank you

 

[snappy]

We are definitely on your side, you can count on it.

in the room where my biopsy was done they had a CD player and they played some soft music that helped distract me from what they were doing and even more saying throughout. I thought this was a good idea. You might want to bring your own portable if you have an IPOD or something. I felt hypersensitive to every word between the nurses, techs and the doc, there were at least 6 people in the room. I relaxed when the soft music started.
They also used heated blankets which was a big help because that room was really cold. You might want to bring some tylenol or advil to take as well, I think maybe they gave me some, not sure.

Glad to hear your DH can go with you. I can't remember how long it took but it was not more than an hour or two. Mine was more lengthy I think because I had two areas to sample (oh joy), one was close to the skin surface and was more of a challenge for the doc to get the needle into the right place.
I think they went over the area more than once to make sure they had a good sampling. I was told what to expect at each step which really helped. No surprises.

You do end up in an awkward position on that table trying to position your chest just so. It wasn't really uncomfortable though. I am a bit selfconscious. It helped that everyone was female except the doc. Very caring people. I swear one nurse seemed to have no other function than to stand by my shoulder, talk to me, and rub my back.

I am glad Merry pointed you in our direction, bless her.

It really helps to "talk" to others who have had a biopsy. You can let your guard down and express fears where you might be trying to hold it all in around family members. This is a place where we can let all "hang out".
You don't have to be superwoman here.

 

[MinnieM3]

Thank you thank you for letting me know of the Stage IV people you know who are making it. My closest teaching partner, Pat, was diagnosed at Stage IV and died within 2 years. It still makes me cry to this day. She was early 50's. I'll never forget the day right before school started and she called me over to her room (directly across the hall....we picked out our rooms together in the new school so we could stay right across from each other), anyway, she calls me in and lifts up her blouse and shows me this horrible redness on her breast and asks if I think she should get this looked at. My jaw just dropped. She had never had a mammogram because she couldn't afford insurance..... she was raising her own daughter and 2 grandchildren on her own.... anyway, Pat, I miss you every single day.

So that's my experience with Stage IV, which is different from mine since I was Stage II and all taken care of until this spread, which I like to think of as a minor inconvenience!!

Went tonight to DS17's percussion ensemble concert and it was FABULOUS! Saw one of my former students who didn't know "the news" and poor thing was just in tears.... I told her it'd be OK and I'd be fine. I felt so bad... she's a sweetheart.

Anyway, I'm hoping to get some sleep tonight and I"m glad it's the weekend! Again, thanks so much.
Beth

 

[MerryPoppins]

Chris, I went for my baseline mammogram at 40 and got called back for a needle core biopsy. They put me on my tummy on a table with a hole it in. My breast hung down through the hole. They cranked the table up high and the radiologist sat on a chair on wheels under the table. It was all very surreal! I remember joking that I felt like I was having my oil changed. They took many samples and took pictures of them while I waited. Then they gave me preliminary results before I went home. I mean, they sent it to be tested, but they said there was no question that it was cancer. I just didn't get the report for a few days.

I remember that I had to be perfectly still for about an hour while they took the samples. That was the hardest part. I'm not going to say that it was painless, but the worst part was the pain shot (I'm needle-phobic) and having to be still. I remember the sweet nurse scratching my nose for me when it itched. She was an angel and she held my hand through the whole procedure.

The good news for me, was that even though it was cancer, it was stage zero which some people consider pre-cancerous. That was in the fall of 2001, so it's been almost 5 years and I'm cancer-free. I consider myself VERY lucky. I caught the beast early and it didn't have time to spread before we found it. So when you start to panic, remember that if it's cancer (and I'm praying it won't be) it's better to find it now and start to deal with it, right? So practice trying to relax and breathe deeply. You'll be strong enough to either celebrate the good news or fight the fight if need be. And we'll be here to cheer you on either way.

If you have any questions, feel free to PM me and I'll try to answer.

 

[MerryPoppins]

Thanks for all the incredible stories! They made my day.

Beth, hang in there. Of course you are feeling a little down. That's natural. But remember that you are strong. You can do this and we're all pulling for you. You are in my prayers every day.

I've got to go put away some clean clothes. Just wanted to drop by and check on all of you.

GAGWTA!

 

[NHWDWGAL]

Beth,

I was diagnosed as Stage IIIA and, like you, I am always looking for inspiring stories. Here's a couple that I've heard recently...

A friend's MIL was diagnosed at Stage IV with extensive mets and was told by her doctors that they could only provide "comfort measures" for her. She refused to accept it, and looked around until she found a doctor who would work with her. That was 10 years ago, and she is doing great!

Another friend recently was at her onc's office and struck up a conversation with a woman in the waiting room. The woman turned out to be a 12 year survivor of Stage IV BC!

And for the Stage III gals...

A friend who is a nurse recently treated an elderly woman who was diagnosed 38 years ago with Stage III BC. The best part is that the woman is now considering reconstruction!!!

Hang in there! I know that it is hard not to let the dark thoughts into our minds, but there are so many reasons to have hope. I am determined to be one of these inspiring stories one day, and you will be too!

Hugs,
Sue

P.S. GAGWTA and thanks for welcoming me. I've been away from the boards for a few days, so I'm trying to catch up. (which is why I am posting at 1:30am...)

 

[Pea-n-Me]

GAGWTA!

Have I mentioned I really love seeing you guys here every day? I just went from reading Beth's post about Pat, to reading Merry's post about the oil change. And oh yes, scrappinmom, I do this every day as I drink my two cups of coffee.

I thought of a another Stage 4 story. My neighbor's brother in his early 40s was diagnosed with Stage 4 colon cancer a short time after my diagnosis. Things were not looking good at all since it was found by accident and had spread to quite a few places. In fact, this neighbor/friend had just given my a medal from Medjugorje and when I heard his story I gave it back to her to give to him since I honestly wasn't sure he was going to make it and I told her he needed it more than I did at that point in time. Oh and BTW, Beth, he lived in NYC and was also treated at SK. Anyway, I'm happy to report that after almost 3 years now he is doing well and even back working again.

Beth, here's another thing that might make you feel better. Does anyone remember the oncologist I took care of in the hospital a while back and what he told me about staging? I wish I could find the old post but anyway, what he said was that technically if you are diagnosed at Stage 2 and you develop mets later on, you are still considered Stage 2 with recurrence. According to him you would not really be considered Stage 4 unless your staging at the time showed mets then (BTW, he is a Professor of Medicine at a major medical school so he should know what he's talking about ). Now we all know that different doctors can tell you different things, but I've thought about this a lot and I think if it were to happen to me it might make me feel a little better to think of it that way. I guess it's just semantics, really, but I don't know, maybe it might help.

Beth, I would also like to think that because the areas of mets were found early (as opposed to mets that has grown unchecked in someone like Pat, unfortunately), the chances that it can be controlled are better and longer.

I guess this is as good as any to mention that my HIDA scan of a couple of weeks ago was normal so I will not be having my gallbladder out. In order to do that there has to be some evidence of abnormality or the risk of lifelong diarrhea is there which according to my surgeon would be worse than the pain I have now in my abdomen. Immediately when I got that news I was bummed and wondering what else could be causing this pain I've had for almost 3 years now? The surgeon does still think it sounds like gallbladder to him, but unfortunately there is nothing else that can be done at this point in time so I'll "live with it". I'm not sure what this means for my next oncology appt coming up. I have the feeling my onc will suggest repeating the CTs of last summer to see if anything has changed. I'm trying to "stay positive" and not worry about it, but it's kind of hard to do when you feel this pain in your side all the time.

FWIW, my FILs HIDA was also normal, and in fact on Easter at my in-laws, my MIL offered she thought for both of us it was probably just "gas".

I also took DD8 to see the ENT this week. Let's just say I was not thrilled with the doc. DD was giggling during the exam when he was holding her nose and having her repeat the word "NO" over and over (I would have been laughing, too) and he didn't even crack a smile, just told her to stop laughing and say NO again. She ended up crying instead. He went over the surgery with me and I'm thinking to myself, yeah, right, I might let you operate on my daughter - NOT!!

Best was on the way out of the garage, I forgot to have my ticket stamped so they charged me $11 to park for 45 minutes. My mood was not the best at that point since I got practically no sleep that day, having worked the night before, and had to get up for THIS. Well, the girl at the booth wanted me to back up and go get my ticket stamped even though there were 4 cars already behind us. Needless to say, I was not happy and lost it a bit. DD was mortified, LOL!! "Mom, I can't believe you said that"!! Oh well, we laughed about it afterward, I was like, sometimes you just can't help yourself.

Have a good day, everyone. We have an 8am soccer game this morning.

 

[donnabres]

Beth, as Linda said, I am stage IV. Took me a long time to be able to say those words. I was diagnosed stage 2 late Oct. by Thanksgiving week, they had found mets to my spine.
I was not too worried just a little scared of the treatments at stage 2, but when I first learned about the spine thing, it was downhill from there.
I went to one session of bc support group here at my local hospital. All the stories were about the women who had surgery, chemo, and radiation. I didn't fit into that catagory. There was one woman who had a similar situation to me, and she was so negative, that I didn't think that was the place for me. I may go back and try again.
I am doing much better emotionally too, my dr. gave me a mild antidepressent, and that seems to do the trick. That along with a long tax season. That ended on Tues. here in MA.
I am doing well on my medication. I was due to go on a study before they found the mets, and it was to use the Xeloda before surgery. Needless to say that didn't happen.

I have not been reading too much lately, but do check in, prayers to all of you.
Donna

 

[MerryPoppins]

The surgeon does still think it sounds like gallbladder to him, but unfortunately there is nothing else that can be done at this point in time so I'll "live with it".

They felt my mom's problem was her gallbladder, but none of the tests showed it. Finally they sent her to the OU Med Center for an internal ultrasound scope thingy. (Can you tell I don't know the technical name?) It showed that her pancreas was riled up, and stones in her gall bladder that had avoided detection in all the other tests. If you'd like, I can try to find out what the procedure was called.

 

[Pea-n-Me]

Thanks, Merry. If I recall, your Mom had an endoscopy, right? I've had that too, as well as a whole battery of other tests including abdominal and chest CTs and MRI of my gallbladder and surroundings and everything has come back normal. Along with the HIDA I recently had another ultrasound as well and it showed nothing abnormal either. I was hoping the HIDA would show a problem. He was as surprised as I was that it was normal and wishes he could help me, but I respect the fact that he is doing what he feels is the right thing. It is just so frustrating.

The pain mimics classic gallbladder pain. I suppose if I wanted to I could push him to do it, or find another surgeon who would, but I respect this surgeon very much, he heads the surgery dept of my medical practice, and he's done surgery on me before. His opinion is that he can't do surgery based on completely normal findings, but more so, he feels I might wind up with this lifelong diarrhea if it's not a diseased gallbladder after all. I told him I certainly don't want any surgery I don't absolutely need, nor do I want lifelong diarrhea, so I guess we're stuck with "wait and see". If it truly is GB eventually something will show up. I just hate living with this pain because it causes me to worry about what else it could be.

 

[NHAnn]

... I also took DD8 to see the ENT this week. Let's just say I was not thrilled with the doc. DD was giggling during the exam when he was holding her nose and having her repeat the word "NO" over and over (I would have been laughing, too) and he didn't even crack a smile, just told her to stop laughing and say NO again. She ended up crying instead. He went over the surgery with me and I'm thinking to myself, yeah, right, I might let you operate on my daughter - NOT!!

sheeeeeeeesh!!!!!!!!!! he told her to stop laughing!?!? uuuggghhh. Don't blame you for being upset! I'd have told HIM "NO!" at that point
I wish you could get some answers/relief on the pain in your side

Donna...I hope you can find some local support that you are comfortable with. There are some times that I don't feel quite right or comfortable at the monthy group at my treatment center and I don't go to it every month Sometimes there are upwards of 15-20 people there, it's kind of "busy" and I'm not crazy about the social worker who is one of the facilitators. But I do meet monthly with 2 of the 3 other ladies I met through a post-Dx info/support program. We continued meeting on our own when the formal thing was finished last summer... and it's really nice to have them in my life.......last month when I had my scare (needed a biopsy after my first post-treatment mamm)...if it hadn't been for them and you ladies here, I think I'd have probably worked myself into some kind of state requiring a lot more than Ambien at night and valium the morning of the procedure .

Beth...glad you enjoyed the concert! Hoping you can get some rest and relaxation this weekend

Hang in there! I know that it is hard not to let the dark thoughts into our minds, but there are so many reasons to have hope. I am determined to be one of these inspiring stories one day, and you will be too!

Well said Sue!!!

Chris--you've gotten a lot of good advice and info on what to expect at your biopsy. I'm glad your DH will be with you. Last year I had excisional (surgical) biopsy leading to my DCIS diagnosis. Last month I had a steroptactic needle biopsy of calcifications on the other side. I brought by CD Walkman and ended up having them put my CD in their player. They said they could put my earphones in, once I was positioned - but it seemed more trouble than it was worth especially since I had to lie on my tummy with one ear down on the table. Once me, and them, and everything, were positioned, they turned the music volume up and their own voices down, so between that and the valium I was pretty comfortable My procedure was on a Wednesday morning and there it is typically 3 business days to get a report. The pathologist sends it to the surgeon as opposed to the radiologist who does the sterotactic procedure. I had a Tuesday morning appt already set up with the surgeon...but got a phone call late Friday afternoon with very good news - benign!! AT the f/u with the surgeon the next week she said they had noted that I tolerated the procedure "extremely well"...she said sometimes it says reasonably well, or just well, or very well" and we laughed about the wonders of valium.
Oh and I need to pass on to you my DH's motto, which is a good one when you're in the testing/waiting mode...."Don't bleed 'til you're shot!!"

Happy Saturday to all.....I went and test drove a 2005 Chrysler Pacifica this morning as I waited for the oil change to be done on my Sebring. I really really hate the idea of giving up my convertible. I bought a used 02 in 03. But it's becoming beyond impractical. Very very difficult with the 2-door and cramped backseat when trying to assist my elderly parents in MAssachusetts - and the car is just so low that my increasingly stiff/sore legs are screaming at my when I'm in it more than 20-30 minutes or so...especially when I try to climb out. The Pacifica was very comfy and roomy and drove nicely, of course much quieter too than the noisy convertible ....it just wasn't shouting "buy me" ...I just don't know....this IS convertible time of year in New England finally...sigh ....

have a good one!!

 

[scrappinmom]

I went today to pick up my report & films for the surgeon, so of course I opened them. Here's exactly what it said "The breasts are heterogeneously dense. In the 6'o clock position of the left breast there is a nodular density which fails to represent a dominant mass under spot compression. However, ultrasound of the left breast demonstrates an ill defined 1.2 cm lesion for which core biopsy under u/s is recommended. There are no other abnormalities.

Impression: U/s core biopsy of 1.2 cm lesion in inferior left breast recommended. Birads 4."

Is there anything you guys haven't told me yet that I can dicern from this?

 

[MinnieM3]

Linda, I had never thought that I was still Stage 2 with recurrence. I like the sound of that much better! Thanks!

Donna, thanks for sharing your journey! Please check back in more often and let us know how you're doing. So you're NOT on Xeloda right now, is that right? What treatment are you going through? How are you handling it?

That ENT sounds like a jerk. He shouldn't be around kids!!!

Scrap, looks like you're in for a core biopsy on that 1.2 mass. That'll tell you so much more, obviously! Sound like you're in good hands. I'll be praying for a clear report for you! Hang in there!

Thanks for all the uplifting thoughts! I'm glad the weekend is here!

Beth

 

[snappy]

BI-RADS O --incomplete assessment
BI-RADS 1 --negative findings (within normal)
BI-RADS 2 --benign findings
BI-RADS 3 --probably benign, 6-month follow-up
BI-RADS 4 --suspicious abnormality, biopsy recommended
BI-RADS 5 --highly suggestive of malignancy


I don't know if this helps or triggers more questions.

As I think I might have posted earlier, my sister and I had biopsies within 3 weeks of each other in 2004. We both were Birad 4 and it was due to clustered microcalcifications. I was diagnosed first. Her surgeon was very concerned, did an surgical excisional biopsy. I think my diagnosis added to the doc's concern. She removed a very large lesion from my sister, it was benign.

We are older than you, I was 50, my sister was 47. Neither one of us had dense breasts.

There are so many variables.

 

[Pea-n-Me]

scrappinmom, a question - where are you in your monthly menstrual cycle, or I should say, where were you when these tests were done? Just curious. It sounds to me like they are unsure of what it is, but they aren't sure of what it's not, either (if that makes sense). So in that case they would have to go on to biopsy. That fact is reflected in your bi-rad score of 4, i.e. suspicous. If it was 5 they would be pretty sure of what it was. I'll have to check my own bi-rad score sometime.

Thanks, snappy, for posting the bi-rad definitions. I googled some sites to do the same and the reading on some of these sites is just . However, I did find this question and answer which I thought would be good to post here. I think in this case the doc is wise and gave some good advice.

39 months ago I had a MRM with axillary dissection 9/17 positive nodes, matted, largest node 5.5cm. My tumor was 5.5cm, grade 3, extensive lymphovascular permeation, ER/PR-, her/2-. 37 radiation treatments, 4 sessions AC, 4 sessions Taxol, no tamoxifen, no reconstruction. At the time I was told I had 65% chance of recurrence within 10yrs. Now after 39 months there is still no sign of recurrence. Please, what is my current chance of recurrence within 10 years -- it should be somewhat less? Thankyou!


A:
You are living day to day in fear. not healthy... don't focus on the fear of recurrence, otherwise, this disease is controlling you. You've given it ample floor time for treatment. Press forward with your life now. No one can tell you whether you will or won't end up with recurrence. statistics are merely numbers and you are not a number. The longer the time passes though the higher the probability is that you are okay. the first 2 years are the most serious window of time for recurrence. so enjoy your summer. get out there and kick up your heels you deserve it.

Beth, I hope that what that oncologist told me is correct, I wouldn't want to tell you the wrong thing. (I can hear some oncologists disagreeing now... )... However, he had no reason to say it, at that point he didn't even know that I was a BC survivor, we were just having a normal conversation about BC in general. OK, who's got the next oncology appointment so we can check it out??

Ann, I love the Pacifica. I thought about getting one when I was trading in my Town and Country, but I decided to go the less expensive route and get a Jeep again (which I also love). I was happy when they gave me a Pacifica in place of my van for 10 days after someone hit me. I told them take your time, I'm in no rush, LOL.

 

[scrappinmom]

scrappinmom, a question - where are you in your monthly menstrual cycle, or I should say, where were you when these tests were done? :

Hi Linda - My initial mammogram was done on the first day of my period (APril 12th) so yesterday would have been 10 days later. Mine usually last 5-6 days. I actually called the morning of my mammo to ask if it made a difference that my period just had started and they said no, other than it might hurt more.

 

[laurabelle]

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

We're under a deluge of rain here, seems so appropriate...I spent yesterday in my jammies. Between all the emotions with Lisa, and getting lots of phone calls, ect. just having another infusion, the cummulative effects of the steriods and never getting enough sleep, I was exhausted. I did manage to fall back to sleep for about 20 min. late morning, but that was it. I helped my youngest finish up her science fair project, the fun part, gluing it all to the display board! It was good to do though...what a blessing kids are. Their world's just go on inspite of it all! It's good to be a part of that...

Chris- I'm so glad you posted here, but sorry you had to...I had a core needle biopsy too. It's been a while ago, and with so many other tests over the years the details can get hazy, but from what I remember, they did an ultrasound used a local anesthetic (needle) to numb the area and took several samples using this instrument that has a long, thick, hollow needle that basically punches out holes, core samples of your mass. It sounds like a gun. I was laying flat on my back on the table, though I know lots of other women who laid on their tummys with the breast going through a hole in the table. (I think that one is called sterotactic) How long it takes really depends on the doc and how many samples they feel they need. Afterward you'll be given ice packs, Tylenol. At home if you put frozen peas in a baggie it works great as an ice pack. It helps to form better around your breast.
A wonderful website that we often refer to here is www.breastcancer.org You can find info on everything under the sun regarding breast health, including details about various tests.
I'm so sorry about your son...I know how you feel about the odds. I'm not one who usually falls into the good side of the odds medically, though I have to say, for all I've been through and continue to go through, I was dxed 7yrs ago and I'm still here! So I guess that puts me in the best odds category of all!

Sue!