Dis Breast Cancer Survivors - GAGWTA!

[goofyshell]

Hi! You are such an amazingly brave, funny group. I posted here a few weeks ago about my mom being diagnosed with bc and having a double masectomy.
She is seeing three oncologists this week to decide on treatment. Her surgeon thought she would need to be aggressive.
Two questions: Can someone give me more info on mets? I think Lindabelle mentioned it a page or two ago. That's what mom has.
Also the oncologist she saw today said my sister and I should both take (I forget the name of the drug) tam.... for five years starting at 35 to reduce our risk of bc. Of course, I will ask my dr., I just wondered if anyone else has done this.
Thank you and prayers and pixie dust to you all.

 

[laurabelle]

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

Kelly (Pixiedust34) - Since it's a diagnostic mamm., like Kelly said, you should get some results right then. Typically results seem to be either: it needs to be looked at further, or they might tell you it looks ok, but to err on the side of caution, tell you to come back in 6 months. BTW- a mamm. and ultrasound cannot actually give you a cancer diagnosis, but it's a tool to let them know if something looks suspicious or not. If so, they'll send you to a breast surgeon, which is still not necessarily saying you have bc, experienced breast surgeons can tell you if it's something that needs to come out or can be monitered. I was told that 80% of women getting breast biopsies have benign (non-cancerous) masses.

Kelly (mickeymost) - First of all, great news from your scans!!! That's crazy about the slides though! I guess if they can't get to the bottom of it, they could retest your frozen section. I know that makes a big difference in treatment though...sheesh! Still praying for you...

Ann- I'm so glad you had a lovely weekend, and missed the storm!

annrae- The cruise sounds wonderful! I wish I was going on it...

goofyshell- I'm glad your mom is getting different opinions. Mets is short for Metastisis. It means the breast cancer has moved beyond the local breast area and has moved to distant organs. It is still breast cancer, even if it moves say to the lungs. Do you know which organs it has metastisized to?
Here's a general bc website that is very informative and will help you understand more and help you and your family form questions for your mom's doctors. www.breastcancer.org

Do you have a family history of breast cancer, other than your mom? You might want to consider having genetic testing done before you and your sister go on Tamoxifen. I have a good friend who is an advocate for genetic testing and she has a very informative website about it with bulletin boards. Alot of bc and ovarian cancer survivors and their families read and post there. Here's the link if you'd like to read more about it: www.facingourrisk.org
Hugs and prayers for you and yoru family...and feel free to come here any time!

 

[snappy]

Thanks for weighing in Kelly (mickeymost). I thought I remembered we had a mammogrammer in our midlst but I was not sure if I saw you on another CB thread or on this one.

I did not know that the digital was not as effective on large women. What if the facility has replaced all the machines with the new digital ones?
I am so glad you posted this, yet another question/thing for me to check on.

I join you in being incensed about the ER testing issue. I think it is crucial that you pursue this. I am sure you would be on different/additional therapy on ER neg diagnosis. I wonder how often this happens. I know I had to specifically ask for this test and the results were very delayed. I wondered what the problem was. I guess I am always skeptical about how careful thes guys are when the do a lot every day.

Regardless, glad your scans were clear. That is excellent news~~
Just hoping you get the rest of your results cleared pronto, and may not need another round of strong chemo.

 

[Pea-n-Me]

GAGWTA! Just a quick hello while I have to get this show on the road, LOL. Thank you for the nice send off. Yes, of course you will all be with me in spirit. My DIS friends mean a lot to me but this group especially so. Hope everyone stays well and warm while I'm away.

goofyshell, sorry about your Mom. I like it when doctors say they're going to be aggressive, kind of makes you feel better, like the whole team is rallying. The website Laura mentioned has tons of good info. And of course, a nice book like Susan Love's Breast Book - it's difficult (scary) reading but it's something you can put your hands on and gather the information you need. Another website I like is www.DFCI.org for learning information on cancer.

As far as the tamoxifin for you and your sister goes, I don't know. There's a whole lot of information that would go into that decision and you will have to do tons of research and get lots of opinions. You'll ultimately have to weigh the benefits and risks of the drug with the risks of getting breast cancer. Genetic testing is a good start. You could also ask about something such as yearly MRIs if your risk is deemed very high so as if anything did show up it would be caught extremely early. You will also be doing monthly breast self exams (BSEs), yearly clinical exams by an experienced practitioner and mammograms.

One question I would have for the person recommending this is what would happen if you actually did get breast cancer, say, 6 years from now, after the treatment was over? I know there are other drugs to move on to, but if you're fairly young you have a lot of years ahead of you. There are people that actually have precancerous (hyperplasia) cells identified in themselves that choose to go on tamox but it sounds like in your case it is because of your mother. Good luck with your research. It's an interesting question. Let us know how you are coming along and what you find out.

The oncologist told me something a little disturbing though. She said that they (the new cancer center here in FL) received my slides from the hospital in NJ and their pathologist reported that the slides were ER Neg. She said she would make sure the report was correct and ask them to check it again. You have got to be kidding me!!! I have been on estrogen blockers for 3 years for what??? There will be he** to pay if that's true.

Kelly, I nearly when I read this last night. To me, if it were true, it might explain why you continue to have recurrences. You may or may not recall - my tumor was ER/PR negative. When I found this out I was bummed, wanted the option of taking tamoxifin. I asked my oncologist if I could take it anyway and she said no, studies have shown that doing so could actually make it worse. I sure hope this isn't what happened to you. I believe they keep samples of tumors which you could have retested. I hope you get this cleared up soon.

I recently read something on www.breastcancer.org (thanks NHAnn, I think) which made me feel better about negative ER/PR status. (It was one of those online forums you could ask the doctor, see if you can find it). Anyway, what it said was that yes, ER/PR neg BC has a higher rate of recurrence in the first few years, but after that the risk is the same as everyone else. That kind of blew me away because the impression given is that it was so much "worse" (when in fact long term survival rates are not worse based on ER/PR status alone). They also said that ER/PR negative BC is being looked at as a whole different disease than ER/PR positive BC since it begins differently, not related to hormones. Let us know what you find out.

FWIW (to anyone reading this), since I cannot take tamox I do take a statin drug which was found in other studies to keep tumors at bay. "Luckily", triglycerides run high in my family so I was on something anyway and my doctors were happy to switch me to a statin when I asked and explained my reasoning. It makes me feel better anyway, like I'm actively doing something, KWIM? (You should have seen my cholesterol readings last week btw, they were amazing!! )

I think Lindabelle mentioned it a page or two ago.

This made me

 

[Pea-n-Me]

I am sure you would be on different/additional therapy on ER neg diagnosis.

That's the hard part of being ER/PR negative, there is no other therapy. I was also HER2neu negative so herceptin was not an option for me, either. I remember asking about that, too, and my doc saying no. I wanted to go on "something". When treatment was over, it was really over. The way she tried to make me feel better there was to say, hey, at least you don't have to take a pill and be reminded every day. Small consolation.

 

[MinnieM3]

That's the hard part of being ER/PR negative, there is no other therapy. I was also HER2neu negative so herceptin was not an option for me, either. I remember asking about that, too, and my doc saying no. I wanted to go on "something". When treatment was over, it was really over. The way she tried to make me feel better there was to say, hey, at least you don't have to take a pill and be reminded every day. Small consolation.

I'm ER/PR neg and HER2neu Neg too....how many others of us are?

Nothing happening on my end here..... just waiting.....don't ya know it'll all happen in one week.... appts., CT's, port in, get a surgery date..... I just know it! La de da!

Getting lots of prayers from alll over though and that helps!

One thing I hate is looking ahead at the calendar and seeing all the things I'll miss in my 6 week recovery.......

 

[NHAnn]

GAGWTA!!!

 

[laurabelle]

~~~***GAGWTA sistas***~~~
Somewhere over the rainbow, there's no BC...

Beth- I'm ER/PR + but I don't know my HER2neu status as that wasn't being tested yet when I was dxed 7yrs ago. I asked my onc about it once they started testing and she said if I had a recurrance we could test my frozen section. At that point, about 4 or 5yrs ago, they were only giving Herceptin to late stage bc patients. Just in the past few months, earlier stage patients are getting adjuvant Herceptin.

I found the article that Linda mentioned. It's very interesting, some newer info that I hadn't heard before. Like, they had thought that all cancers start as hormone receptive and somehow change to negative, but they've found that that's not true. They are now treating positive and negative cancers as two different beasts. Positive bc being better treated with hormonal therapy and negative bc being more responsive to chemotherapy. The recurrance rate is higher in the first few years after dx with negative bc, but levels off, though typically if a recurrance happens past 5yrs, it's in a hormone receptor positive bc.

http://www.breastcancer.org/cmty_trans_2005_11.html

I know it's so hard looking at all the things you'll miss out on during recovery...I hope and pray that it goes smoothly and you wow the doctors with how quickly you heal!

 

[Cruise04]

Hello everyone

What an icky dreary day here. Sleet last night and suppose to get some rain/sleet today. Tuesday the temp was up to 59, which is very high for IL at this time of year. Temps this weekend will drop down to below zero at night and mid teens during the day. I'm ready for spring!!!!!!!!!!!!!!

Glad to catch up on the posts. I'm still keeping you all in my prayers!!!!! Some of you have been through a tremendous amount the last few weeks.

Well I'm finally making some progress on whatever this is in my thyroid. I go to see a surgeon (after a mess up with my regular docs nurse telling me I needed to see an endocronologist and finding out the guy they wanted me to see is no longer there and then calling the nurse back and finding out in my file was listed - on the 8th and I called originally on the 10th - that I was to see a surgeon for followup and further treatment) next Thursday. Fortunately this was the surgeon I dealt with this fall when I had the breast issues so I'm very happy with that. I'm on a waiting list in the event she gets a cancellation too. So we'll see what she wants to do at that appointment. I'm hoping it's a needle biopsy and that she will extract all of whatever is in there. If it can't all be extracted I want this taken out. I'm in pain again, sucking down ibuprofen every 6 hours to be able to swallow comfortably. I really felt my neck this morning when I was taking a shower and this thing is large. I can feel it very well.

So that's an update on me right now. Hope everyone has a good rest of the week and weekend. We are now getting a thunderstorm and it's 36 degrees. Weird, weird, weird weather!!!!! I just want to go home and bury myself under my covers - it's just too icky out!

Take care everyone!
Chris

 

[laurabelle]

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

Chris- I'm glad you got in with the same surgeon...hopefully he'll have a cancellation and you can get in sooner. Is there anything stronger you can take for the pain while you wait? I hope and pray that he will get to the bottom of this and it's something simple...

My UC is pretty bad again... very bad day yesterday and I'm up and at it already today. Monday, and my next infusion, cannot come fast enough! I'm trying to focus mentally on my Denver trip, though the thought of packing doesn't thrill me, it just makes me tired. My inlaws called last weekend and my hubby didn't tell them that I'm sick again (still). I know I'll be talking to them again before I leave, so I guess I get to break the news. I'm really hoping this infusion Mon. will be miraculous!

 

[Tiggeroo]

My problem is not breast cancer related but I figured I could get some help here. I'm having alot of tests done. I have a fear that they'll tell me it's pancreatic cancer which would be very bad. The dr's haven't said this but when I ask they won't say not at all possible, just unlikely. I'm sitting here waiting for the results of the cat scan. But to avoid another day of waiting plus the fear of being by myself when the test results come in I'm going to a friends for a bit and then to my mothers.
How do you handle waiting for test results that you are afraid of the results of?

 

[Pixiedust34]

How do you handle waiting for test results that you are afraid of the results of?

I'm in the waiting stage, too. I have a lump in or around my lymph nodes and am waiting to have a mammogram on Monday. After that, I see a breast specialist.

I've been doing OK until this morning. I started to cry. And, once the floodgates opened.........Let's just say it was like Niagra Falls.

My thing is to keep busy. It's good that you are going out today. Keep yourself occupied. Heaven forbid, if we get the results we've been dreading, I don't want cancer to rob me of all of the things I do in life. It's good to keep busy and to do whatever it is you enjoy doing--grab some laughter where you can.

ALL the best to you--I hope your test results come back soon and that you are fine.

 

[NHAnn]

Tiggeroo...waiting is so very difficult. For me, when I got my diagnosis, even though it wasn't the "benign" I was hoping for, I was actually relieved by knowing that I could move ahead and deal with it. During the waiting times...I just tried to calm myself in any way that worked at any given moment. Keeping busy while at work, and at home trying to listen to calming music or some other distraction or just cleaningor something! I also just had to breathe deeply at times and repeat to myself...."it is what is, and though I don't yet KNOW what it is, I can't CHANGE what it is I'll deal with it when I know what it is!" Allthe best to you and others waiting for results

Laurabelle-I am praying for a miraculous infusion for you too

GAGWTA!!

 

[Cruise04]

Laura I'm sorry to hear that you still are having fits. I hope the infusion on Monday does what you are hoping it to do. I'm sorry that you have to be the one to tell your in-laws as well. I haven't even told my dad about this mass on my thyroid yet, I just can't. Every time I think about it I cry, even though I don't even know what is the situation. And I can't even imagine having to tell someone that again you are sick. I don't have anything at home that is stronger than the ibuprofen but my doc said it was fine to take it as long as I stretch it out. I can't take any on Wednesday. Today the pain isn't too bad, which has been happening. One hour it's fine and then the next it's intense.

The waiting game is the hardest - I remember that from when my mom was sick and waiting for diagnosis and she'd have blood work like 5 days before her appointments with her oncologist and of course wouldn't get any results until seeing him. I just kept myself busy. And with my recent health issues I have made myself busy. I'm involved with a couple of volunteer organizations and that has helped because I have some big projects that I'm working on that has helped keep me busy.

Hope your test results come out okay and you find something out.
Chris

 

[MerryPoppins]

Tiggeroo, they haven't ruled out pancreatic cancer for my mom either. She's had so many tests, but they can't seem to put a finger on it. Hope you and my mom get good results soon.

I'm thinking positive thoughts for the rest of you, too. GAGWTA

 

[Dan Murphy]

Just stopping by to say hi to all you wonderful ladies here. 's

 

[MNSusan]

Hi ladies! Hi Dan! GAGWTA!!

Its cold here, too. Yesterday's HIGH was -10. Windchills have been in the
-30 to -40 degree range. Today its sunny and 7. Woohoo - heat wave!

I agree the waiting is the hardest. I busied myself learning all I could about what I might be facing. I learned about the different types of breast cancer and what their various treatments would be if I had them. It was important to me to be prepared for whatever the doctors told me.

It may be twisted, but when I finally found out my diagnosis, I was relieved it wasn't something worse. I kept thinking, well at least its not ovarian, at least its not lung, at least its not (fill in the blank). For me, that kind of thinking helps me stay grateful, and that's where I need to be.

Healing thoughts and gentle hugs to each of you.

 

[snappy]

Hi everyone!!!

My experience sounds like yours Susan. After I knew it was cancer but treatable, I felt better. Also, with the results from each test, I knew a little more. What is the old saying, information is power?

I read every book in two public libraries and the library in my local cancer services office. I read a lot online as well. I lost a lot of sleep but I did feel like I knew what I was facing. But women are different, some want to know every possible scenario and what to do about it, and some would rather wait until the doctor tells them about stuff. I always found my doc, although very good as a surgeon, was easier for me to talk to when I had researched everything and asked specific questions. I did a lot of "homework" before each visit. I think he was afraid I was scaring myself, especially reading in detail Susan Love's book. I am just not sure doctors really know what going through this is like.

I also actually felt better when I was told the best surgery for me was a mastectomy, due to multiple foci of tumors. I think it would have been much harder struggling with whether or not to go with the more conservative surgery and do radiation.

My biggest dilemna and the thing that caused me the most angst strangely enough was which hospital to use. I have a good friend who has held senior jobs with a hospital and she sort of opened my eyes. I did a lot of research and found out some of the hospitals here have problems with infections, etc. My doc was chief of surgery at one hospital which has actually turned around and is doing better now. I was worried though, with its previous financial and personnel problems that patient care might be compromised so I ended up at a different, women's hospital. Luckily, he agreed to do my surgery there. I now think either hospital would be ok, hopefully I won't need this anytime soon, unless I have reconstruction.

I think throwing yourself into things you love really helps. Not to mention prayer and spiritual music. I have an ocean sounds CD that I still listen to nearly every evening when going to bed. And my namesake Snappy (our golden retriever/collie mix) is about the only thing that keeps me sane with two teens, one compulsive gambler brother, and all the other stuff from the past year.

Hooray for pets!!

GAGWTA!!!

 

[Tiggeroo]

It's been three days and they haven't given me the results that are supposed to take 1-3 days. I called today and she said that if it was something bad it would have been red-flagged and I'd have been called. The thing is with pancreatic cancer it appears that there is no real treatment. So I wish I didn't have that thought in my head right now. I keep thinking if it was something like that over the 7weeks they've been messing with this diagnosis I'd be much sicker by now.

 

[laurabelle]

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

Tiggeroo- I'm so sorry you are being put through this. Waiting really is the worst! It can drive you crazy thinking about the worst possible dx...I know it's hard to get your mind on anything else for 5 min.! The ladies here have already given you such great advice...I'd just add, don't be afraid to scream and cry or whatever either! (just don't get arrested! )You're in a horrible situation, so vent! I don't know what your symptoms are, or what tests they've done on you, but I hope and pray whatever is going on in your body, that one of these tests reveals it, and it's not as bad as you fear...and that you find out soon!

MerryPoppins- Same thoughts and prayers for your mom too...

(Pixiedust34) Kelly- I hope that cry helped... it's good to let it out sweetie.

Hi Dan! Thanks for always offering your support and encouragement...it means alot to us!