Dis Breast Cancer Survivors - GAGWTA!

[laurabelle]

Yes it would have been very nice. I really didn't have much support from my Dr.'s office in the way of offering a group talks or social worker like I heard about from one of the support boards that I found. Even one of my co-workers that had a double mast. didn't given me the support I thought she would but I believe it is because she lost both of her breast (but only had cancer in 1 breast, she decided to do both so she wouldn't have to worry all the time) And I on the other hand was very lucky enough not to had to have a mast.and I also think it just brought her own year of recovery back full force to her. And I know that feeling so well when my best friend had a mamo and they found something, she took it really well, I on the other hand was more of a mess that when it happen to me because it brought back all my feeling of that year, so I don't in any way blame her.
I just hope that I can be able to help anyone that needs it in the future.

Becky, My cancer center doesn't offer support either, crazy huh!?! It's in a big university hospital and they're great for doing all the latest stuff and for research, I did a couple of clinical trials there and lots of studies, but they don't treat the whole person. Thankfully I've been able to fill in the gaps for myself, by reaching out to others and having a strong faith in God. I realize some people just want to be through with it and move on, but cancer has changed my life, and I can't not offer support...it's what I do now.

 

[NHAnn]

I'm back from my appt......I have a Stage 0 Ductal Carcinoma In Situ.
I have a choice of mastectomy, or lumpectomy (some margins were not clear on the tissue excised) followed by radiation. Then medication like Tamoxifen (or possibly a trial with Arimidex if I want to participate instead) following either option. She (the surgeon) kept stressing that this was a "good" result to have. I actually feel better KNOWING! I did not sleep at ALL last night.
I have a lot of thinking and stuff to do, and stuff to read....next week I consult with the radiation oncologist and also meet with the surgeon again to let her know my decision...

thanks for your support....I'll probably be back with questions later.......

 

[Cruise04]

NHAnn

We'll be in Disney at the same time this year - maybe we can meet up and I can give you a real HUG!!!!

I'm sorry to be on your thread but I hope I can add support even though I haven't officially "been there". Having gone through this with my mom, I know this side of it and try to offer as much support to anyone that needs it on your side.

 

[laurabelle]

((((((Ann)))))))
I'm so sorry for your bad news.
I bet you have a million questions forming... take a deep breath and gather your thoughts...now exhale.
I know a few of my other sistas have been dxed with DCIS alone and opted for bilateral mastectomies. The newer drugs like Femera and Arimidex are very, very promising if you're post menopausal, they have an increased benefit over Tamoxifen. So ask about Femera too. http://www.breastcancer.org/ is a friendly, easy to read informative site when your'e ready to do some reading.
Feel free to PM me if you'd rather talk offsite.
Your in my thoughts and prayers...

~Blessings~
Your sister in survivorship,
Laura

 

[snappy]

Sorry about your news, but like you said, knowing is so much better than fearing for the worst. At stage 0, it sounds like there is not an invasive component, therefore no concern about microscopic spread through the lymphantic system. This truly is "the best" kind of cancer to have, if one must have it. If you can avoid the lymph node removal procedure, you avoid much discomfort under the arm and avoid future lifetime risk of lymphodema.

Have you considered getting a second opinion from another surgeon as to which choice would be better, mastectomy or lump. plus radiation? Do you have good reading material? I bought and pretty much read cover to cover Susan Love's Breast book. The cancer library my local Cancer Services office contains serveral copies of this book that can be checked out (I have ready many, many of their other books), but Susan Love's book is one that I continue to consult regularly.

My cancer was also primarily DCIS, but I had a tiny area (.1cm) of invasive. If I can be of any help, please feel free to ask here or PM me. Good luck with your decision.

 

[NHAnn]

Thanks everyone.
Lord, I have a headache this afternoon!
My surgeon seemed to lean toward lump/rad over mastectomy, in that she said mastectomy is not something she would push in a case like mine. But I could choose it. Sigh...I just don't know. One thing that confuses me is, if there were margins that were positive, how would they know that it is all non-invasive. Maybe a second opinion is a good idea, though I do really like the surgeon and have had positive feedback from a co-worker and a co-worker's mother who have been treated by her in the past. I just couldn't even formulate some of these questions this morning, but she and the Breast Care Center Director (a ARNP/MSN) both said to call anytime.
snappy, I think I need to go get that book. The Breast Care Center has a library and I have a Borders nearby too.

Oh and BTW...I had a total hysterectomy (ovaries too) almost 4 yrs ago at age 44, have been on 1 mg estradiol daily since, and have to stop that cold turkey Let the hot flashes commence on top of all this

 

[laurabelle]

Ann,
I never realized going into cancer treatment that so many decisions would be mine...it was kind of shocking! You're doing great, read up on YOUR cancer, try not to go places you don't need to, if you know what I mean. Get your education, ask lots of questions, and follow your heart. Only you know what you're going to feel comfortable doing.

I imagine your surgeon will want to do a re-excision to get clean margins and that area will be biopsied too. I needed one. My cancer had DCIS, LCIS, lobular and ductal invasive all in one teeny tiny but aggressive tumor.

Dr. Love's book is considered by many to be the bc bible. Besides it's nice to have something to hold in your hands to read... searching on the 'puter all the time can be taxing.

 

[TigerCheer2009]

Ann !! My mom had Stage 1 DCIS. Sorry about your news. Keep us updated!

 

[Pea-n-Me]

NHAnn, I'm sitting here sad and glad for you all at the same time.

You have a lot of positives in your situation believe it or not. I know that's hard to fathom right now so let me point them out for you: your tumor was detected very early; it wasn't invasive (so you don't have to worry much that it will "spread"); the survival rates of DCIS with surgery and radiation are terriffic (almost 100%); you (most likely) will not need chemo; and your tumor must have been hormone receptor positive so you can take tamoxifin which is a nice option to have (not an option for me ). So if I had my choice of picking what type of this disease to have, I would pick exactly what you have (which is why your doctor called it good news)!! Some even consider DCIS a "precancer" that if left alone could turn into invasive cancer but that won't happen here because you found it and are dealing with it!!

See, you have to look at the positives!

And if you're going where I think you're going you're in wonderful hands. I almost went there myself but ended up having my surgery at my own hospital (in Boston, where I'm an RN) since my surgeon was on staff at both places.

You have a long few days ahead of you in learning all you can about the disease and making decisions on what type of surgery to have. The website that laurabelle recommended is excellent, I keep it on my Favorites for when I need to refer to it. I also have the Susan Love book but found it extremely clinical and frightening to read. I very rarely look at it now unless I have to. Then again, having to deal with all this as a nurse has in some ways made it difficult for me since I "know too much" and see a lot of tragic things in my work which makes it hard. (I think you'll have less angst in reading it than I did and once you make your decision you'll feel better and just want to "get on with it"). Sounds to me like you'll be in great shape for your trip in December.

It's always good to have a second opinion, and it doesn't mean you have to pick the second surgeon (though I did when I thought I wouldn't). They're used to it and expect it - they'd do the same thing themselves. It's an akward question but at the end of the visit I usually ask them if I were their wife or daughter what would they recommend I do? Also, if it were themselves what option would they choose? Not definitive but telling in many cases. (Be careful not to make it seem you want them to tell you what to do, then they won't answer. Just what would they recommend to their own family and/or themselves if they were in the same circumstances).

Keep us updated, we care and we'll be thinking of you. Come visit anytime here if you need a You can also PM me anytime.

P.S. I want to respond to the vacation comments also but I'm off to work myself now and will respond later.

 

[NHAnn]

I imagine your surgeon will want to do a re-excision to get clean margins and that area will be biopsied too. I needed one. My cancer had DCIS, LCIS, lobular and ductal invasive all in one teeny tiny but aggressive tumor.

Yes that's what she wants to do. It's still confusing to me that she would say it is non-invasive and only in the duct when the margins are not clear. Couldn't biopsy of the next "chunk" removed show something more/different. DD (18) and I took a ride to Borders in my convertible this afternoon. Rather surreal on a nice spring day. I bought the Dr Love book and DD bought a book on Hidden Mickey's to prep for our trip at Xmas. She said "I want THIS book, it fits better in my little world of denial".

 

[Pea-n-Me]

NHAnn, forgot to say: I once read you become a survivor on the day you're diagnosed. Welcome to the Survivor's Club.

Time to get that pink ribbon in your siggie.

 

[MerryPoppins]

NHAnn, my diagnosis was stage zero DCIC, too. Know that yours was caught early and you WILL be okay. Try to stay calm and have faith that everything will be okay. I'm living proof of that you can beat this and it's been almost 4 years. My husband and I had this mantra that went something like "It's going to be okay. These are just things we have to deal with to get there!" The Susan Love book is great. DH read it for me, because I was in no state to comprehend anything when they gave me the news. I was floored. I strongly suggest writing down questions you have. I was so jangled, that I couldn't remember what I wanted to ask. If you write things down, you're less likely to forget.

This is your cancer and you'll have to make some decisions. I'll share my story, but that doesn't mean you should make the decisions that I made. I just thought I'd tell you why I made these choices. It might help you think of things to ask your doctor. They offered me the option of taking part of my breast with radiation or doing the mastectomy. If I had the mastectomy and they hoped they could get clear margins and no lymph involvement. If they accomplished this I could skip radiation. The kind of cancer I had was aggressive and fast-growing. They couldn't guarantee that they wouldn't miss some if we didn't do the mastectomy. That scared me. I asked them if they could be sure that if it came back we'd catch it before it spread. They said they couldn't be sure of that, but that they'd check every 6 months. I also asked how much of my breast they'd have to take. In my case it was like 1/3 of it would be gone. (As an aside, I found out right before 9/11. Boy did I feel like my world was changing! I hadn't even had my surgery when all hell broke loose.)

Personally, I felt like taking part of my breast would be like living with a time bomb. One of my friends had died of breast cancer that had spread. I wanted the cancer out, even if it meant losing my breast. I just couldn't deal with the idea of taking a chance with my life. I've never been much of a gambler. I have two kids at home and a husband. I felt that they all needed me too much. I thought I didn't want to live with the worry and stress that they might not have gotten it all. So I chose the mastectomy. I also had a reduction of the remaining breast. At first I wanted reconstruction, but I reversed the procedure when my extender burst. I found I was very comfortable with the new me and didn't need the extra surgeries.

There was no lymph involvement. I had no additional chemo or radiation. I was VERY lucky. My cancer was the kind with estrogen receptors, so I take Tamoxifen. I just went back to yearly mammograms instead of every 6 months and I am cancer free. I wear a prosthesis that I named Betty Boo-b. I lose her frequently. So the family is used to helping me search for my Betty.

Feel free to send me a PM if you want to talk. I'd also be glad to give you my email if you'd like it. I'd be glad to be a shoulder to lean on. I've been there and it's not easy. I'm sure you're in shock right now. Know that you are not alone. We're all pulling for you. If you have any questions, please ask. I'd be glad to try to help you. All of us would.

By the way, I have a DS who will be 18 next month and a DD that is 14. They'd be happy to talk to your daughter (you did say daughter, right?) if she needs a friend. Sometimes it helps to talk to someone who has been there. We could exchange IMs or email if that would be helpful to her. My DH would be willing to offer support to your DH as well. Just let us know.

 

[kkana]

NHAnn - so sorry to hear that you are joining our survivor's club, because I do count the day we found my lump my anniversary since I basically knew immediately, I just felt it.

I'm a 4 year survivor - had a lumpectiomy aMay 2001nd lymph node dissection (some positive), chemo and radiation - complications which resulted in repair surgery Dec 03 with massive complications with healing, just heading into my next round of tests, ultrasound, CTscan, muga scan, mammo, lab work, all starting on May 17 and no results until June 29 few days before we leave. I get so nervous every time, I don't feel there is any problem, however I never stop worrying.

My online support group is a MSN group "Friends in Touch" and they are a fantastic group of ladies. Feel free to drop in.

I like the idea of this group, there is never enough support.

 

[kkana]

hope this one works with the pink ribbon in my siggie

 

[JennyMominRI]

I know I'm not a Breast Cancer survivor,But an AIDS survivor..The thing is,there really is no group for women with AIDS..There are no decent support systems.. I know it's a different disease but really we all deal with chronic illness. I don't really have anywhere else to go.
You ladies are very inspiring

 

[NHAnn]

Thanks again ladies. I'm not only overwhlemed by the day's events but by the comfort and support you're showing me.

MerrPoppins...thanks for your offers and sharing your story. It does help hearing different perspectives/thought processes. I do have a sheet of paper I've scribbled on all day to make some calls tomorrow. DH is now digesting some of the written material I received today while we watch American Idol.

Added the ribbon!

 

[laurabelle]

Ann, I count the day of my diagnosis as my Cancerversary. I read somewhere that if the news you have cancer doesn't kill you...you're a SURVIVOR!

 

[snappy]

I know I'm not a Breast Cancer survivor,But an AIDS survivor..The thing is,there really is no group for women with AIDS..There are no decent support systems.. I know it's a different disease but really we all deal with chronic illness. I don't really have anywhere else to go.
You ladies are very inspiring

You could not be more welcome in our group, JennyMominRI. I remember reading some of your story. Believe me, you are the one that is inspiring.
Maybe we should consider this a surviving serious illness group?

Glad you joined in on this thread.

 

[laurabelle]

I know I'm not a Breast Cancer survivor,But an AIDS survivor..The thing is,there really is no group for women with AIDS..There are no decent support systems.. I know it's a different disease but really we all deal with chronic illness. I don't really have anywhere else to go.
You ladies are very inspiring

((((((((Jenny))))))))
I don't know what it is about bc surivors that we have managed to build up support for ourselves. But I'm here to tell you, if there is one of you out there, there are more. I could not find any young women to talk to when I was dxed at age 36. I started an online group on Yahoo (very easy, costs nothing) and women just found it by word of mouth and searching on Yahoo groups. I'd just like to give you some encouragement to give it a try. I was past my dx by 3 yrs, and still desperately needed to connect with other women like me. And I think I speak for all us bc survivors that you are more than welcome to hang out on this thread. Like you said, we are all dealing with chronic health issues...I'm sure we have ALOT in common!
~Blessings~
Laura

 

[laurabelle]

NHAnn - so sorry to hear that you are joining our survivor's club, because I do count the day we found my lump my anniversary since I basically knew immediately, I just felt it.

I'm a 4 year survivor - had a lumpectiomy aMay 2001nd lymph node dissection (some positive), chemo and radiation - complications which resulted in repair surgery Dec 03 with massive complications with healing, just heading into my next round of tests, ultrasound, CTscan, muga scan, mammo, lab work, all starting on May 17 and no results until June 29 few days before we leave. I get so nervous every time, I don't feel there is any problem, however I never stop worrying.

My online support group is a MSN group "Friends in Touch" and they are a fantastic group of ladies. Feel free to drop in.

I like the idea of this group, there is never enough support.

Welcome kkana! I'm sorry to hear about your complications, you certainly have had a hard go of it. Praying your tests come out well.