Dis Breast Cancer Survivors Part II -GAGWTA!

[laurabelle]

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

I'm here Laurie... Summer is winding down here The kids start school a week from Monday so we are busy squeezing the last bit out of summer before our world revolves around school again.
Thankfully a month after school starts we'll be back at WDW!

Thinking of you pat fan!

 

[pat fan]

patfan....how did the ultrasound go?

I have to go for a biopsy. He said it's not a cyst but he's pretty sure it's benign. I'm waiting for them to set up a time for the biopsy. My regular provider has me set up next week with a surgeon (she did this the same time she scheduled the ultrasound), but the guy who readthe ultrasound yesterday recommended his colleague who does the the thing where they shoot the needle in, it's one pass and also tags the area in case of it not being benign. He said the surgeon goes in multiple times and you have to lay on your stomach with your **** hanging down and I don't know....I guess I have to call my primary today and see what she recommends. Any opinions anyone? One shot deal sounds much better to me! Oh, and he said he does 3-4 a week. That doesn't sound like many, but I guess you can't screw it up, right? I hate living in a hick town sometimes

 

[Iluvthemouse]

I have to go for a biopsy. He said it's not a cyst but he's pretty sure it's benign. I'm waiting for them to set up a time for the biopsy. My regular provider has me set up next week with a surgeon (she did this the same time she scheduled the ultrasound), but the guy who readthe ultrasound yesterday recommended his colleague who does the the thing where they shoot the needle in, it's one pass and also tags the area in case of it not being benign. He said the surgeon goes in multiple times and you have to lay on your stomach with your **** hanging down and I don't know....I guess I have to call my primary today and see what she recommends. Any opinions anyone? One shot deal sounds much better to me! Oh, and he said he does 3-4 a week. That doesn't sound like many, but I guess you can't screw it up, right? I hate living in a hick town sometimes

Hi PatFan--sorry you are going through this. This is a great group of ladies here that can help you every step of the way.
I just had a biopsy last month. My girlfriend had the kind you lay on your belly for but mine was the going in w/a needle and extracting. I would prefer that method compared to what my GF said. It was painless. I am very lucky that my results were B9.
As far as DH's, I didnt tell mine until I couldnt hold it in any longer. I felt the lump, went to the doc, went for ultrasound that said "suspicious mass", went on a short weekend trip to New York and finally on Sunday I told him. It was more of a "I didnt want to worry him", or he really would have no clue how to help me. But when I told him, we cried together and prayed together and he went with me to the appts/biopsy.

Good luck and tell us what happens.

 

[laurabelle]

pat fan- Sorry you have to go through a biopsy. Here's one of my favorite sites for breast health info with descriptions of different types of biopsies http://www.breastcancer.org/symptoms/testing/biopsy.jsp
I had excisional surgical biopsy, then at a later date a core needle biopsy (multiple biopsies taken). Hopefully reading up on them will give you a better idea of what to choose.

 

[snappy]

Gosh, since you asked, I had both, the original was the stereotactic core needle biopsy where you are upside down with the area (yours was bleeped out) hanging down. It sounds barbaric, but actually the setup I did not think was bad, they provided plenty of extras for modesty and comfort. There was one angel whose entire job seemed to be making sure I had a warmed blanket, the music was to my liking, and to rub my shoulder to keep me calm. Samples were taken all around the suspicious area, by a radiologist after the area is marked via yet another mammogram.

I also had the needle biopsy, done in the office by the surgeon, which may be the one shot type he described.

My sister had the ultimate in invasive biopsies, the surgical kind.

All can be tricky, it really depends on the location of the tumor.

My impression was that the way the type of biopsy was determined by the area. If it is a lump that can be easily identified and aimed at, the needle biopsy might be the best choice. If it is an area or areas of suspicion that present as microcalcifications on the mammograms, they recommend the stereotactic needle biospy where samples are taken.

In my sister's case the area was large but thankfully benign so they removed the entire area for testing.

I am afraid I cannot remember the details of your case, but I would think you could ask for both the best technique for your particular case and the least invasive as well.

The radiologist who read the diagnostic mammogram after I flunked the screening one was the one that recommended the stereotactic biopsy. My GYN doc at the time sent me directly to the surgeon, who reviewed my case. The surgeon was the one that ordered the stereotactic core which agrred with the radiologist's recommendation so I thought it was the right way to go.

My needle biopsy was done by my second opinion doctor when she felt a lump very deep down inside the breast on the other side when she examined me. Perhaps the deepness necessitated that type as well as the fact that it was defined mass she could feel. Thankfully that was benign.

Good luck with this decision, and let us know how it goes.

 

[snappy]

That link was great, Laura, very clear information on each type. I had forgotten there was both incisional and excisional surgeries. My sister had the excisional where the removed the entire area. In her case it was a good choice to remove it (the surgeon also ordered and did this procedure) since, although benign, there were some areas that could have developed into DCIS with time.

Ok, I just read back to your initial post, patfan. Since you have a lump, the needle biopsy would work. Just be sure and ask about any chance of false negatives. That seems to be the only downside of that technique.

I would also ask if any microcalcifications showed up on the mammograms. I would also ask for copies of the radiologist's report from the diagnostic mammograms, as well of a copy of the pathology report after your biopsy. I found it very useful to have a file with my test results.

Come what may, we will be here for you to "talk to."

 

[snappy]

Changing the subject here. I hope you guys don't "dis" own me but I have to tell you what we are having for dinner tonight if I can get my act together. We are in crab season right now, and you can buy a pound of lump crabmeat for $10. I just found a great recipe for a casserole that is about 95% crabmeat and seasonings.

Kinda makes up for the intolerable weather we have been having.

I wish I could figure out a way to bring some for everyone when we come down for the RFTC next month.

Maybe I should try freezing it?

Time for an experiment. . .

 

[Pea-n-Me]

I believe the false negative rate is around 10% with needle core, which is why they'll sometimes go ahead and remove the lump completely and examine the whole thing just to be sure. So patfan, it's possible that's what they might want to do if you have whatever type of biopsy and it comes out negative. Remember, you're a short distance away from some of the best medical care in the world (ie Boston). Don't hesitate to go there if you're feeling underconfident where you are. Hang in there.

Iluvthemouse, thanks for chiming in, that's right it was you who had hesitated to tell your husband at first. I'm sure it's assuring to patfan, too, to hear your results were benign.

I forgot to mention in my excitement the other day that I had my Vitamin D levels checked (new info out on this) http://www.webmd.com/breast-cancer/news/20070529/vitamin-d-calcium-vs-breast-cancer and they were fine, as were my cancer markers. Still waiting to hear about gene.

We don't start school again until after Labor Day which is the way I like it. So we still have a little while left of summer.

GAGWTA

 

[snappy]

Linda, You did the BRAC test? I had forgotten.

Glad the other tests cam back all normal. That is a relief.

Thanks for the link about Vitamin D testing, although since I am on the older side, I may not benefit. I do take calcium religiously, the one with added D. Can't hurt, and the D is supposed to help with absorption anyways.

Enjoy the rest of your summer. DD12 is finding homework ramps up a bit in 7th grade. She is being diligent though. Needs to be since premier practices between actual practice time and driving to and from is about a 3 hour commitment.

When I got home from another dorm item purchasing excursion last night, DD12 had cleaned the kitchen for me. She proceeded to do a load of laundry too from start to finish. She was on a roll, asking what else she could do. I could have kissed her feet.

I realized later she was biding her time until the Olympic events she wanted to see came on. Wish it wasn't so late at night. It was hard to get her up this morning.

Glad this thread pepped up a bit today. Yesterday was slim pickings.

 

[MerryPoppins]

Hi ladies.

We're getting into the back-to-school routine around here. School starts next Wednesday for DD. DS starts back to college soon after that. I'm hoping DD made enough progress with her occupational therapist this summer that school will be better this fall. Her grades dropped a little last spring, and I knew she was still doing the work/trying. I talked to our old OT and she wanted her to come in. It seems her SPD is out of whack, so she's been going in all summer. She's so close to getting scholarships, so I'm hoping she's back on track enough that school will be less stressful. She doesn't want to blow it now.

Hang in there, patfan. Waiting is hard. Sounds good that they think it's benign. I'll pray for you. Please consider sharing this with your DH. I think he should know what you're going through even if he doesn't act supportive. I'd be hurt if my DH didn't tell me something like that.

Thinking of the rest of you. Just not posting as much since life keeps getting in the way. But you're in my thoughts and prayers.

 

[pat fan]

UPDATE
Okay, I did tell DH and he was great, a little irked that I hadn't told him befrore, but I really didn't want him worrying for nothing. He is going to go with me for the biopsy.

Re: the biopsy....whoosh, a lot of Greek there for me .
My regular doc called me back and said she had talked to the surgeon and they both recommend him doing the biopsy. I guess he said that since you can see it on the mammo and the US he recommends doing the procedure. I forget what it was called, but after reading the replies, I think stereotactic sounds familiar. She said he might even recommend doing an incision for the biopsy but he'd know after he saw the films. She didn't sounds quite as upbeat as the radiologist did, but that could just be how I'm taking it. One of her reasons for recommending the surgeon was so if more things had to be done we'd be familiar with each other.

Thanks for the link, I'll be checking it out. I know I want to be informed and all, but part of me just wants them to just do whatever they want and get the show on the road for pete's sake! Waiting until Tuesday seems forever.

Thanks for the support.....

 

[Pea-n-Me]

he might even recommend doing an incision for the biopsy but he'd know after he saw the films.

He probably said excisional which is what I was referring to in my post above. They place a wire and take the whole area out to biopsy it, then there are no false negatives, and as long as you get clean margins, that's the end of it, you kind of have a lumpectomy done and over with. If margins aren't clean, then they go back in again to be sure they've gotten it all out.

Sometimes even when lumps are deemed benign, they like to get them out of there anyway. That way there are no surprises later on. It's all about being extra careful - which is scary, but great. We've all heard the horror stories of cancer cases that were "missed", or they "waited too long", etc. It's good that they're taking this seriously and moving forward the way they should with it.

Breast surgeons are the experts in all of this, not primary docs and not OB/GYNs even. So it's good that you're already hooked up with a surgeon because that means you're in the right hands! Isn't it nice when you don't have to argue with anyone about wanting to see a surgeon or wanting to do have a biopsy done? (Yes, it still happens, uggh.)

I'm glad you told your husband. I can't imagine keeping this type of thing to myself (but then again I'm just super open about everything anyway; I'd rather have all the cards out on the table so then I can move forward.) Funny, though, unlike most women, I preferred to go to a lot of my appointments and procedures alone. I'm odd.

 

[Pea-n-Me]

You did the BRAC test?

Yes, and it was quite a decision to make. Besides talking at length about it with my oncologist, who went through my entire family history, I had to meet with a genetic counselor who did the same, and also talked to me at length about the practical considerations, like insurability and such if the test comes back positive. I'm all about insurance, so that scared me. My mind was overwhelmed. But they told me that if it was positive, they'd recommend having my ovaries out, and there would also be implications for my (4) children and even my brother and sister and other relatives, so I finally threw caution to the wind and said "go ahead before I change my mind", LOL.

What ultimately made the decision for me was that first I have to worry about living, and the rest of it will always fall in place somehow.

My onc felt that because there is no screening for ovarian ca as there is for breast ca, that it is something I really ought to know, as the incidence for ovarian ca is higher if you're positive (which is why they recommend prophylctic oopherectomy - of course I'm thinking about Shugardrawers who had primary periotoneal ca, same as ovarian without ovaries, and I asked about that and yes, you can still get that, she gave me the statistics ). The other thing I didn't know was that triple negatives like me are also higher in, I believe it was BRAC 1. So we'll see what happens. I guess they passed a federal law this May for privacy where this is concerned but we all know that with the internet today, this information is out there. I don't really know all that much about it, maybe someone else does and can comment. Has anyone else here been tested, or is thinking about it? How did you make the decision? Has it impacted you in any way? (PM if too private.)

 

[Amy]

Hi Ladies! I don't post much on this thead any more - I'm a veteran from the 1st BC thread, and I'm 6 years out from my diagnosis/treatment. But I DO try to read and keep up with all of you, although this thread is moving pretty fast.

I'm spending the day crying, and I needed to talk to somebody and I figured you guys would understand better than my DH or any of my non-cancer friends.

I had my regular 6-mo checkup with my oncologist today - everything is fine. But she told me that she's been laid off and today was the last day I'll see her. I started bawling like a baby and have been ever since.

She is the most kind, caring doctor I've ever known. I remember when I had my lumpectomy - I was in the hospital, we'd just found out that it was indeed cancerous and were waiting for results to see how many lymph nodes were affected. She came into my hospital room and introduced herself (I believe my gyne was the one who referred her to me), took my hand, went over what we knew so far; she outlined everything I'd be facing in the next couple of months, and was absolutely wonderful.

She the kind of doctor who actually cares about her patients, not only physically, but mentally as well. She's been there for all the little ups and downs (iffy mammograms, swollen lymph nodes), listened to me whine (yes, I'll admit I whined!) because the Tamoxifen made me gain 45 pounds and the Arimidex added horrible bone paid on top of the extra weight. Basically, she's been my rock through all of this.

I've been feeling great lately, but mentally I'm on the edge. We're taking our DS18 to college on Saturday, my dad's got some health problems that he's handling in his way which is not the way I'd handle things, but he's still capable of making his own decisions and I have to back off even though it's killing me. Plus we had some layoffs at work, girls who've been there 27, 34, 37 years, some of my friends, and even though mgmt said they're done, the rest of us are just waiting for Round 2 (and I've been there 30 years, so I'm an "expensive" employee, although I'm parttime). Add on the usual, daily stress....

Anyway, I'm sure all the stress I've been under lately is adding to my sadness, but I just can't seem to stop crying. I feel like I've lost my best friend! She literally saved my life, gave me all the pep talks I've needed when I'd get scared of recurrence. I'd find an article in the newspaper or a magazine and take it in; if she didn't know the answer, she'd look it up and call me the next day with an answer. And she'd take the time to call me herself, not have a nurse do it.

I know I'll be fine with the other doctor in the practice (who I've never seen at all over the past 6 years, only saw the name on the door).

I don't know....maybe it's just all the "loss" lately. Losing my friends from work, on Sat. I'm "losing" DS18 to college life. Whaddya think, maybe if I do enough crying today I won't cry when we leave DS at college? Nah...I'll still cry.

Sorry to ramble on and on, but I know you guys prob. know what the relationship is like with your own oncologist and maybe you'll understand a little of what I'm feeling. If she had been one of those 5-min in-and-out types of doctors, I probably could care less. But I'm really going to miss her, and I think part of me is scared - what if I get cancer again; who's going to take care of me?

 

[Pea-n-Me]

Aww, Amy. You've had a lot going on.

I had a similar thing happen earlier this year when I had to go to a new oncologist because mine was going out on medical leave for her own health issues. I was so bummed. But the office is the same (which helps) and turns out I really like this new lady too. As a matter of fact, I posted last week (when I had a hip scare) that I saw my old oncologist, who's "sort of" back, and she gave me a hug and reminded me I could call her any time. For now I'm going to stay with the new onc but I may have to choose. Tough because I like them both. They are different styles, though. And this whole gene thing is because of my new onc, LOL.

I've got to go out but I hope you feel better, glad you came by.

 

[MerryPoppins]

Amy, I'm so sorry. I'm the kind of person who bonds with my doctors, too. Especially one that you see so often and has been so kind to you. I certainly understand how you are feeling. But I'm sure the other parts of your life aren't helping. Sounds like it all sort of snowballed on you. I'll be thinking of you.

Remember, if you don't like the other doc you can always find someone new. My OBGYN told me years ago to always remember that. You as the patient always have the power to take your marbles elsewhere.

 

[Amy]

Aw, thanks Linda and MerryPoppins....like you said, this was just one thing too many. Maybe I should just let go and have a good cry. That way maybe there won't be too many tears left for college good-byes on Saturday! DS18 will kill me if I turn into a blubbering idiot when we leave him. The boys were watching King Kong (the recent remake) a couple of weeks ago, and I came in toward the end. I was in tears when they were shooting the poor gorilla and my DS's just looked at me like I was from some other planet or something!

Of course, we'll be taking 2 cars on Sat., so I'll be driving home alone and can cry all I want.

 

[lookingforward]

Hi everyone. I just got back from Dallas, TX for a conference on Crimes Against Children. Very good conference, depressing topic. I will catch up later. I hope everyone is good. I am tired and have to go out school supply shopping. YIKES!

More later....
GAGWTA!

 

[NHAnn]

Laura...what time do you leave on the 3rd?? we arrive at MCO at about 2 pm on that day.....tried to PM you but couldn't!

patfan...thinking of you! Whatever happens, as others have said, we're here to go through it with you!!

welcome back Maureen!

Amy...you need a hug today for sure

I'm just realizing that, if you count kindergarten, this is the first August
in 17 years that I have not been getting my "baby" ready to go "back to school"!!

Linda, the insurance aspects of the BRAC testing bother me too. Not just that insurance won't pay for it, but that if it ispositive it affects future insurability. Our Breast Care Center has had a genetic counselor coming one, then two days per month from Dana Farber because of the growing demand for the testing from patients here. The demand is so great that they are actually hiring one of their own and expanding the Breast Care Center to include a couple of more offices, for the geneticist and another breast surgeon. We are also FINALLY getting digital mammo, they promise in time for my next annual screening due in January!

If you all could keep a fellow survivor and new friend of mine in your prayers I know she (and I) would appreciate it. I first met her briefly through work a couple of years ago ... it's a long story (and some interesting God winks)... but she is very private so I don't feel I should post the details. Anyway she very recently discovered she has bone mets. Her name is Jennifer.

Hello to everyone I didn't mention....GAGWTA!!!!!

 

[lookingforward]

I had the Braca testing and my insurance paid for it. I was negative. I just did it, I never gave it any thought regarding health/life insurance, etc. That is a very important consideration. I know that I will never get life insurance again. Some can get it after ten years, but not so much if you are stage 2 or higher (according to discussion boards). I have a term life insurance policy through 2019 with automatic renewal, so I am making sure that never lapses.