Am I a survivor or....what am I?

vmudrow

Coolbreeze - very well said, yo have a way with words....  Those of us that don't have a cancer diagnosis really can't know how you feel.  We did what we did so hopefully we will not be in your shoes - and I feel sooo badly for those that do have breast cancer.  I watched my mother, aunt and cousin battle the disease - and don't think I would have been brave enough to go through what they did or what you are- that's why I chose PBMX.  Thank you for sharing - sending prayers your way!!

Hugs, Valerie

hrf

I'm sorry you are going through this. You are getting a lot of good advice from others on this board. The way you are being treated is evidence of your family's ignorance of what it means to be BRCA+. We are never out of the woods. If you haven't had your ovaries removed yet, that will be your next step. And being BRCA also means we are at risk of other cancers as well. And not wanting to scare you but you will continue to need surveillance as it is still possible to get BC because it is never possible to get all the breast tissue. You have decreased your risk by 90% and you should feel proud of yourself for having the courage and the wisdom to take care of yourself. I know it has been mentioned already but if you have not yet checked out the FORCE web site please do. Also through FORCE most major cities are running support groups for BRCA people that meet a few times a year. It is an opportunity to meet others who have had similar experiences and I highly recommend you look them up. You call yourself whatever you like and don't let anyone make you feel bad. You did the right thing and one day your family will applaud you for that

CoolBreeze

Thank you for understanding my point and knowing that I wasn't trying to diminish your suffering. The truth is, you are far braver than I am. I really don't think I would have been able to do what you, and others like you, have done. I very much admire you.



I am fine dealing with cancer now and am positive about it, but I think I would have put my head in the sand in your situation. Your courage is greater than mine and is so commendable. Just know that if your famiky cant see that- we can. Their loss.

MRDRN

http://www.youtube.com/watch?v=9ocrQIyc8n0

National Previvor Day will be recognized for the second year this Sept, before October the Breast Cancer Awareness Month. 

Let's support  all Knowledge is power.

p.s. you can't pick your family

AJ251

Well, it turns out that I had an ovary malfunction and emergency surgery to remove them with Apparently, the tubes and ovaries were "full of" precancerous tumors, cysts, masses....whatever.  So....It is done.  All of the target organs for the genetic cancer stuff are gone and all I have to do is heal and keep on the lookout for anything odd over the years.  I wish that everyone had the chance to catch it all early enough too.  Oh....also, I no longer speak to my father.  I have had enough abuse.  I'm done.  and I am free.  Free from the drama that I don't have the energy for anyway.  Thank you again for your posts on this matter.  Hugs to all.  Oh...last thing...I did seek the FORCE groups and have joined.  They, like you, are an amazing group of women that I am proud to know virtually.  Hugs!

loveb

AJ251: I'm so sorry you've had to deal with such a difficult situation. You certainly didn't ask to be put in it. This thread really hit close to home for me with comments from CoolBreeze and others about a label.

I really struggled after my Mom died from breast cancer. I held her hand as she passed away and can never articulate the power of that moment. For whatever reason, after she passed it was like taking a bullet every time I would hear "breast cancer survivor".  I don't know why I had such a strong reaction but it somehow made me feel like my mother's fight and courage and strength was not recognized because she didn't "survive".

After some soul searching I came to realize I didn't need a label to honor my mom. She was my hero, period.  Because of her strength and that of women like all of you on this forum, I had the courage to make the right decision to have a prophylactic bilateral mastectomy to save me from the very real possibility of breast cancer.

All of you have fought the good fight regardless of diagnosis, procedure or result. Because of all of the women like you who have gone before me, diagnosis or not, you have given me the courage and strength to make incredibly difficult decisions that very well could have saved my life. And because of that, to me, you are my hero. 

thatsvanity

Hi a j251,

Your story sounds like mine. My sister died 2/14/2011 invasive ductile carcinoma. She was 41, I have many women and an uncle die of breast cancer. I had the same atypicality diagnosis as you. I had a bilateral prophylactic mastectomy on may 26th, 2011. Intook care of my sister until she died and I went with her to every treatment. Then three months after she died I had my mastectomy, so I relate to you I feel like a survivor and I have deep mourning for the loss of my sister, I wasn't the patient but I was right there with her feeling it. I was diagnosed with atypical hyperplasia 3 and a half months before she died, so it's all related mothers, sisters, friends, daughters, aunts, dads uncles, breast cancer touches many lives beyond the person with cancer, and the person with cancer like my sister worried more for me as she was dying than herself, so you can tell your family you are a pre survivor.

thatsvanity

Hi loveb,

Thanknyou for what you wrote about your mom I felt the same way about my sister who passed away. She didn't survive but she fought harder than anyone I have ever know! Sometimes I get crazy with the

Ink ribbon stuff I want to scream do you know what breast cancer is really like?!!! It's not a pink charm bracelet, it's not a pink t-shirt!

So ai am still grappling with the ineffective screening tools and the quiet dismissiveness of the health community regarding young women and breast cancer.

Your post helped me understand more, she's not a label she was just sick with a horrible disease.

elimar86861

Alive.  (The label is not important.)

loveb

I'm so sorry about your sister thatsvanity. It's still pretty recent and I'm sure very raw for you. I'm very glad your sister had such a strong and loving person at her side. You both sound like amazing women.

K-Lo

Jesus, anyone who has a breast surgeon recommend a BLM is a survivor to me. I had a very good prognosis at first and felt guilty to be among those with more invasive cancer. I told my husband they shouldn't call what I have cancer.



But now I see.... it's a sneaky disease.



If I came from a family of lethal diabetics and they did something to prevent the likely chance of me becoming one, well, I wouldn't say I was a diabetic but I would ceratainly feel part of the group.



Another way of seeing it: having cancer is not a badge of honor. It is nice to be treated with consideration. But as I said before, I have relatives who have lost term babies, had multiple heart surgeries and joint replacements. They suffer silently. The pink ribbon campaign is to raise money and awareness, not to pat anyone on the back, is it?

Rushell

"The pink ribbon campaign is to raise money and awareness, not to pat anyone on the back, is it?"

(clap, clap, clap.......) perfectly said.

I am contemplating on having doen what you have shown bravery on doing.

I am sorry that your family is showing you their jealousy, which I think is what it is. I tink they are jealous that you have ascaped the "label". It's not that they don't think you deserve it, it's the opposite.....they wish they didn't carry it.

Believe it or not, I don't think it's meant to be quite so directed towrds you. I think it's their own personal turmoil they are dealing with.

5 years ago, when I started getting my lumps checked and worrying that I might have cancer, my sister, who is a cancer survivor (had a third of a lung removed and 2 brain tumors removed, now is a 12 yr "c" free) I went to my sister to support and all I got was the cold shoulder and told "you have no idea what I went through and you likely never will cause breast cancer is not the same as lung cancer." After that, she wouldn't give me the time of day.

All i'm saying is that you can'y carry around someone elses problem. It's their problem to deal with, not yours. Just take care of yourself.......and be grateful that you had the opportunity to deal with it BEFORE it become something...they just wish they had.

troyryans

AJ251, I am also a previvor, and have encountered negativity from others because I am not a "survivor". If having 11 biopsies, three surgeries to remove atypical ductal hyperplasia, undergoing a complete preventative hysterectomy (TAH BSO) to stop estrogen production, completing a cycle of tamoxifen, having mammograms, ultrasounds and breast MRIs every six months, and being squished, prodded, lifted, poked, and pulled, isn't surviving, I don't know what is!

I come from a family of extremely strong, independent women who unfortunately have breast cancer. My grandmother was diagnosed at the age of 48, had both breasts removed, and lost the battle right after turning 52. Her sister had a double mastectomy at 47. My aunt had a double mastectomy at 51. My cousin had a mastectomy at 38. I was diagnosed with ADH at age 46. I am BRCA negative.

 I participated in the Avon 2-day in Chicago this past June, and did not mark that I was a survivor, mainly because I was afraid I would have to explain what type of cancer I had, and then to  potentially experience negativity from someone would have been too much. So, when my aunt and cousin, bless their hearts, put my name on their bibs to indicate they were walking in support of me, I was so touched. After being asked why I didn't list myself as a survivor, my dear aunt said "Honey, what are you waiting for???  We are ALL survivors."

Next month I will participate in the Komen "Race for the Cure" walk, and am wearing a shirt that says "Working to kick cancer's butt".  Survivor, previvor, supporter...it really doesn't make a difference as we are all the same, aren't we?  We are all fighting the fight regardless of what stage, and you truly can't put a label on any of us except "brave".

Keep positive, surround yourself with supportive people, and rejoice in life.

AmandaL

I just had PBMX after 10 years of thinking/researching/praying about it. This, after only having my baseline mammy at 30yo. My mom "survived" BC, diagnosed at 32, but our family has spent 25yrs worrying and waiting for re-diagnosis for her. She has had countless rounds of "precautionary chemo" over the years because of weird blood work. Her story is a loooong one...but my reasoning for choosing surgery because of risk is one I am very much at peace with. Not to lessen what my mother, or anyone else with cancer, has dealt with. I have just been an extremely healthy person ever since I can remember, and chose to be proactive about my health. PMX's are seemingly more and more common, and it's a great thing to have the option. My ins paid for everything, no question. I am incredibly thankful and proud of myself for taking control of cancer before IT had the opportunity to control my life. There are so many things we are not in control of, we must leave it all to God. But, I also feel that HE gave us free will for decisions like this and is proud we choose to protect our bodies from cancer. I have had a few people I've discussed this with make me feel like they do not agree with my decision, but for the most part, people are supportive and proud of me.

All that being said, the FEARing diagnosed is very real, and scary. BUT, I realize I could go my entire life without being diagnosed as well, it's a personal decision, and so others should respect that it is YOURS to make and not judge, just support and love. WATCHING your mother go through cancer for your entire childhood and then worrying through adulthood about her getting re-diagnosed is another thing, it gives you great perspective into cancer, and sometimes feels like a disease all on it's own. HAVING cancer, is something I do not pretend to understand. My mom didn't agree with my decision in the begining, now she does. It's a sensitive issue, understandably.

Just know that you are not alone. Hopefully, your family will come around.

MRDRN

GREAT READS!  very positive energy here and thanks for posting.   I am sure it helps when we spread the word to those afraid or still trying to decide.

cp418

Wonderful post Amanda!  Thank you!!