Dis Breast Cancer Survivors - GAGWTA!

[Lessa of Pern]

thanks for the lovely words about my daughter, everyone.

Hollyann, I hope all goes well with your biopsy.

 

[Daxx]

GAGWTA!

This will be quick b/c I'm getting ready to leave for my appendectomy.

Stereotactic Core Biopsy was yesterday. They finished doing it and then the dr. said she didn't have a good sample and could we re-do it. Of course, I said yes! She thanked me for letting her have another "go" at it and she got a good sample that time. We all cheered. Results s/b in by Fri., so I will have DH post when we know.

All in all, it was not as bad as I thought. I "fit" in the table -- remember my size concerns!? They had a difficult time locating the calcifications b/c my breasts are so small, and, for a minute, they thought the calcifications might have been on the skin (which would have been a good thing). Unfortunately, they were not. Oh, well ... at least dr. got a good sampling and that makes me happy!

What else to tell!? I hurt quite a bit yesterday and continue to be sore this morning. However, I have a feeling that this will have been a cake-walk compared to the appendectomy!!!

Blessings to all ... I thank you for your thoughts and prayers. You'll be hearing from DH soon ... and hopefully from me, too. Thoughts and prayers are w/you all. Esp. w/you, Hollyann!

Hugs to all of you! Warmly, Susan

 

[Pea-n-Me]

GAGWTA!

Laurabelle, hope you are doing better.

Susan, glad they were able to find the calcifications and that you "fit"! I guess you're going to have some major soreness both up and down. Take it easy. (Hey, try not to get hooked on those sweat pants wiil you?)

Laurajean, I've been thinking about your question from a medical perspective. But I keep coming back to the fact that in my head (for myself), I wanted them to give me everything they had in their bag of tricks. When I first read about tamoxifin (which was also before I knew as much as I now know about breast cancer) I was kind of glad I didn't have to deal with making the decision of whether to take it (because my tumor was hormone receptor negative). But then the more I learned how rare the [major] side effects are and how it's been proven to lessen recurrence and prolong surivival I wish I could take it. I know people who could but chose not to as well. It's so individual.

As far as radiation goes, I did that as well. If you're concerned about skin changes for myself they're really not drastically different now that it's been over a year since my last treatment. Radiation is meant to kill any cancer cells not only in your breast, but in my case they radiated under my arm (since on CT they found my breast tissue extended down there and I had a positive node) and also my clavicle area since (they said) 10% of the time there can be a positive node up there as well but they don't normally check those. As my radiation oncologist told me when I asked why we were doing what seemed to me like a pretty large area, they wanted me to have the best shot at not getting a recurrence that they could. I did have concerns about my underlying organs receiving radiation, but luckily in my case it was my right breast; with radiation to the left breast there is a larger area of lung and heart exposed but they take precautions to give you the lowest amount to do what it needs to do while doing the least damage to the organs. Remember, millions of women get radiation for breast cancer and you don't hear much about problems from it. They are very good at it today but it is important to find a really good radiation center. I loved the crew at mine. In earlier posts I told how they insisted I bring my puppy and kids in every day with me and while I was in the machine I could hear the commotion outside. I actually missed them when I left and my radiation oncologist, who I still see for follow up, is probably my favorite doctor of all. Oh yes, and the tattoo marks are barely noticeable.

(ETA: my cancer was invasive ductal carcinoma so admittedly our circumstances are different).

Lessa, I like your DD! And thanks for sharing the word nachus -I'll remember that.

Hollyann, sorry you find yourself having to go through the biopsy procedure but glad you had a place to come. Keep us in the loop, ok?

 

[snappy]

Sorry Hollyann

Hoping for another clean report on Friday. Thanks for posting the BI-Rad number. No one talks about that too much. I was starting to think it was just my sister and I who knew about this and maybe that we were attaching too much significance to it.

We both had the same BI-RAD nuber -4's. Hers was benign, thank goodness, and mine was caught early.


LauraJean, I looked at noninvasive tumor section in the radiation chapter in my book,Outstanding Breast Cancer Care, Gregory Senofsky, MD, an active breast cancer surgeon in CA.
It was written in 2002, so it is out of date but I'll quote:

For the most part, invasive cancer treated by lumpectomy requires radiation whereas some forms of DCIS may not require radiation in addition to lumpectomy. The latter point is a very controversial issue, and not all physicians are in agreement. You will have to discuss this issue with your radiation oncologist. Several studies suggest that not every form of DCIS requires radiation treatment after lumpectomy. National trials are underway to test this hypothesis. Certainly, there appear to be differences among varieties of DCIS. Thus, there may well be groups of tissue types and tumor sizes that can be removed with adequate margins and so do not require further treatment. Hopefully, the studies will answer these questions.



These are my words, I think I would ask you doc about the type of cancer you have and try to get infor about the trials.

Good luck

 

[Laurajean1014]

Has Susan checked in yet?

 

[Laurajean1014]

I think I would ask you doc about the type of cancer you have and try to get infor about the trials.

Thank you, Snappy. I appreciate you looking this up. I guess I fall into this catagory, but it's hard for me to decide.

I am calling my BS this morning to get his advice. I hope he doesn't tell me, "you do what's best for you." I'll scream!

 

[Pea-n-Me]

Several studies suggest that not every form of DCIS requires radiation treatment after lumpectomy. National trials are underway to test this hypothesis.

In my way of thinking, I don't think I'd care to be ones who found out I should have done it. Just my opinion but you asked.

Actually, many, many studies have already proven the benefits of surgery and radiation combined for DCIS, showing excellent cure rates with this therapy, some as high as 100%. Those are nice numbers in my book.

Of course, they can be pretty high with surgery alone too (depending on the unique characteristics of your DCIS), so it really does come down to a personal decision about weighing the benefits with the risks. No two people will feel exactly alike (sorry ).

Your doctors will guide you but will steer clear of making the decision for you. I usually ask what they themselves would do if they had exactly what I had - that can be pretty telling and actually my oncologist's answer to that quesiton helped me decide on the type of surgery I chose.

 

[mickeymost]

Hello Everyone

I've been away for quite awhile, so I need to go back and do alot of reading, I just wanted to stop and say HI

We are all moved in to our new FL home. It actually went quite smooth, except that the newly radiated area got all inflamed and tiny blisters formed. I thing I was doing too much too soon, and sweating didn't help the situation. It seems to be doing much better now.

We just returned from a weekend at the world. It was DSs 8th birthday, what a way to celebrate! Then again when you've been through what we all have you have a new appreciation for things.

Hope all are well. I will catch up on posts through the week. I have been gone so long, there is so much to read.

Talk to you all soon
Kelly

 

[Laurajean1014]

Thank you Linda. I placed a call to my BS and my internist to get their "take" on the situation. I'm concerned with the bone frality of the two ribs (can fracture easily).

Friends w/o any cancer history are telling me "don't do it." But they have not gone through what I have, nor what you all have gone through. Wouldn't anyone rather be safe than sorry? It's a personal decision we all have to make.

What about Tamoxifin? Snappy gave me her take on it, and I appreciate it. I read earlier on these posts that Tamoxifin was icky.

 

[Pea-n-Me]

Laura, I was trying to find some information for you from Susan Love, but wasn't very successful. However I did find an excellent article which explains what you need to know to make an informed decision - here it is:

http://www.breastcancer.org/research_radiation_050003.html

 

[MerryPoppins]

LJ, I can't tell you what you should do. Wish I could. It is very individual. I listed the side effects I had from Tamoxifen. (I forgot to mention that they have to draw blood 2X a year to check liver function, and it can cause birth defects too.) Honestly, some of the side effects are a pain. I have to be truthful with you. There are times that I have groaned to my DH about quitting. In some respects it has changed my life.

But having said that, none of the side effects I've experienced are so horrible that I have quit. DH wants me to have everything in my favor for not getting BC again. I think the benefits outweigh the drawbacks. And at this point I am over the hump. I'm halfway there.

The upside of Tamoxifen? I have less hair on my legs to shave off since I started taking it. (Instead they all grow out of my chin! ) I'm NEVER cold. I could go out in the dead of winter with 2 feet of snow on the ground and never wish I had a coat. My family says I should take a job in an ice cream factory because cold feels so wonderful to me. Periods are fewer and usually much shorter in duration. I have fewer headaches (probably due to change in levels of estrogen my doc says).

 

[Pea-n-Me]

Merry, just wondering - if you had it to do over again knowing what you now know about tamoxifin (risks and benefits), would you take it?

 

[laurabelle]

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

Lessa- Wow! Your daughter is growing into an amazing young lady! How absolutely appropriate and beautifully fitting to the day!

Susan- You are a champ! Thinking of you and praying your surgery is going well...

Hollyann- I am so sorry...you're in my thoughts and prayers. Please let us know how it goes.

Kelly- Good to see you! Congrats on the move!

Laurajean1014- Well, it actually is all our decision, not the oncs or anyone else. Believe me, that floored me too! I thought, you mean you don't know??? The docs make their recommendations based on your specific pathology and how people with similar path. reports historically did with certain treatments. You really need to have your pathology report in hand and do some research. There are alot of factors that go into the decision, besides just type of cancer and stage. My tumor was very small (.08cm) but it was aggressive, in 2 lymph nodes, DCIS, LCIS, Lobular and Ductal invasive and I had just turned 36yrs old. I read ALOT and did not have any other younger women to bounce ideas off of, so I relied on what resounded with me in what I read and trusted that God would lead me in the right direction. I did what I felt I needed to be a survivor. BTW-I never had any trouble on Tamoxifen, I did the full 5yrs. http://www.breastcancer.org/ is one of my favorite sites for info.
HTH

 

[MerryPoppins]

Merry, just wondering - if you had it to do over again knowing what you now know about tamoxifin (risks and benefits), would you take it?

That's a good question. I'd think about it harder. I have to admit, my mastectomy changed my sex life less than Tamoxifen did. But I'd probably still go ahead and take it since my doc suggested that it would be smart. I'm sure DH would have pressed for me to take it. At least I would have felt that I was making a more informed decision if I'd known all the side effects I'd experience in advance.

 

[MerryPoppins]

Hi Kelly. Glad you're getting settled.

Hope Susan's surgery is going well and that we hear soon.

Holly, my prayers are with you. I'll be thinking of you, so keep us posted.

 

[PigletsPal]

I was just at Wal-mart and they had alot of nice things for Breast Cancer Awareness: Antena topper for $1.92, Laynards, fanny belts, scarves. I bought the topper, can't wait to put it on my van.

 

[Amy]

Hi all! Just wanted to chime in on the Tamoxifen issue. I took it for almost 3 years, from June 2002 thru Feb 2005. The worst side effect for me was the weight gain - 40 lbs. I kept telling myself that 40 lbs was a small price to pay to keep the cancer away. I had no periods whatsoever while on Tamoxifen - it was wonderful! Once a year I had to have a uterine sonogram because of Tamoxifen's risk of uterine cancer; ended up having a D&C twice because the lining was thicker than it should have been, but no cancer was found. I didn't notice any sexual problems with the Tamoxifen.

In Feb. my oncologist said that my hormones were low enough that I was officially in menopause and she switched me to Arimidex. 3 weeks later, I was having horrible pain in both heels; found out recently that it's plantar fasciitis, not a side effect of Arimidex, but it's just too weird that the pain started when I switched to Arimidex.

Anyway, I've been off the Tamoxifen since Feb., but the weight hasn't started coming off. Go figure.

As you're probably sick of hearing "everybody's different" and how my body reacted is probably different from how yours will react. Just do lots of research, talk to everybody you can, and make the best decision you can. Good luck!

 

[Hollyann]

Hi everyone!

Just checking in. Bought my front-clip sports bras to wear for 2 weeks after the biopsy...

Thank you for all the good wishes - I sincerely appreciate it. I'm looking forward to posting good news on Friday (maybe the day after - anesthesia makes me real sick).

Anyway, has anyone heard from Daxx regarding her surgery? Hope it went well.

Take care and hugs all around!

 

[laurabelle]

Ugh. I just wrote a whole post that got sucked into the black hole...I'll try again.

Tinkertude- I meant to reply to you this morning...thank you for wearing us on your back at the race! I will say a prayer for Amanda...
I'm the the Baltimore area and our local YSCMD group is working with Lillie Shockney on that program! I told my friend Nik in La. about it, but thankfully she was able to finally get her chemo and didn't have to take me up on my housing offer.


Well ladies, I left a message for my gyn to call me. I wanted to let her know what is going on with me and that according to my calendar I have been getting visits from Aunt Flow every 2 weeks since June, which I assumed was from the colitis flare up. I saw my gyn last in May. She called me back to tell me my pap was abnormal. She said it didn't look like cancer, but abnormal. I guess I fell through the cracks, that was 4 months ago! I can't worry about that now... I am going to have a pelvic u/s and see if anything else is going on.

 

[MerryPoppins]

Laura, when are you going in for your exam? You are certainly in my thoughts and prayers. At least she didn't think it looked like cancer. Wonder what abnormal would mean? Know that we're all pulling for you!