NO I do not care for everyone to know I have Cancer.

Renabell

Newly diagnosed DCIS both sides. Already had double lumpectomy. Going for first visit to Radiologist tomorrow. My Dr. suggested Mammosite and from what I understand it needs to be done now. I am not sure what I will do.I have read a lot about both options.Also having genetic testing this week.
My Mama died last October from Cancer.She had breast Cancer (her's was invasive) mine is not. She was first diagnosed 1993.It came back in the bones 3 years ago.
I was devastated and broken to my very soul.I still am and can't seem to get my joy in life back. I am also angry and I hate Cancer.I have always hated October because of Breast Cancer awareness month and now my Mama died in October.
My question is when you were diagnosed did you feel like telling everyone you know? I told my husband I did not want to announce
to everyone we knew that I had Cancer.I have only told who I thought needed to know.He does not understand this and wants to know why.
Has anyone else felt this way? I don't want people treating me any differently.I don't want to explain my diagnosis over & over. I just want to get my treatments finished and put this behind me.
Any one else feel this way?

momand2kids

Yup

I have family and colleagues who still don't know and it was 6 years ago--I told only the people who really needed to know (h, kids, mom, sister, etc and boss, few colleagues.) It is your medical information and no on has a "right " to know. People walk the earth with all sorts of medical issues and do not share--I have never understood why bc people are expected to be so public about it.

do what feels right to you----

good luck

momof2doxies

No I did not want my DH's family to know and only select people of my immediate family. Mainly because they are ignorant and make very irritating comments. Of course they assumed that something was up when they saw me at my DD wedding and my head was peach fuzz. But we did not tell them or give any details.

I had rather talk to a complete stranger than tell "friends and family"

voraciousreader

only told a few people...almost 5 years ago. Mom, bless her, going on 90, has NEVER been told! Had I told her, she would have navigated my care! It's your disease! It's your call and your life. Tell as many or as few people as you are comfortable telling. I wish you well!

Ariom

Renabell, so sorry you have had to join us here, but you have come to the right place if you want support and to chat with others who really "get it".

I am the flipside to your question, I think I was so flabbergasted when I was Dx, that I tended to blab it out. I didn't care at all, about who knew and fortunately, for me it has worked out ok:) Like a lot of women, after this Dx and surgery, I have had the odd friend disappear and a couple of insensitive things said to me, but in general, my interactions on the subject have been pretty positive. If nothing else, I have made some women re think their apathy about self exams and Mammos! LOL

I live in a small town and I am very involved in our BC support group, so I am often asked to speak about our group at functions etc and I am also the contact person for our Breast Care Nurse, to refer newly Dx women who want to join our group, or at least find out about it, so I guess I have had to be "out" because of that too.

The short answer is, of course, there is no right, or wrong answer to this question. Just like everything else in our lives, we have different feelings about things and our comfort zones can be vastly different.

Whatever feels right for you, is right for you!

mefromcc

When I was diagnosed, I only wanted select family members to know. My boyfriend (now husband) didn't understand why I wanted to keep it quiet. I just didn't want to hear opinions and horror stories from people. Once a plan of care was established, I allowed him to tell his longtime buddies so he would get the support HE needed. His first wife had died of breast cancer, so I knew he would need a different type of support. Husbands talk to wives, so I heard from these almost strangers giving me support. Turns out 3 of the group are also breast cancer survivors.

Susug

When I was Dx I was a little apprehensive about telling people because my identical twin sister had breast cancer 12 yrs ago,(she passed away 2 yrs ago. Not of cancer) my cancer isdifferent than hers she had DM and chemo. It was aggressive and in the lymp nodes mine is very small 4mm and slow growing and not in the nodes Everyone kept asking me why I wasn't having Dm. Unless they have been there it's hard to explain.so at first I didn't tell many people but word gets around.i think if you don't want to tell its your life do what you feel is right for yo

Nancy2581

I think I was like Ariom. I just couldn't believe this could happen to me so it came out, but basically it was to people who mentioned I changed my hair (ha my wig). I felt like I was lying if I said yes I did. Instead I said yes I did but not by choice then spilled the beans. It wasn't a lot of people - mainly the people I've met and gotten to know on dog walks plus I told family too. I never posted it on FB though.

I think everyone should do what they feel comfortable with.

Nancy

WinningSoFar

I also told just about everyone, and some strangers too. I'm basically an open book and that's my style. It has its pluses and minuses. If you don't feel like telling, I sure wouldn't. That has its pluses and minuses too. I don't think there's a right answer.

jwilco

I did not tell anyone but a few. Even at work. I was lucky and didn't have chemo. So I guess if I had then they would have known.

Mostly I didn't want people to give me their opinion on MY cancer. I have learned that there are many types of BC and many treatment options. Some people at work think they mean well, but they can be gossipy and judgemental. Afterwards there were times that I did feel like sharing but didn't. People close to me know.

I think it is up to you. It's a personal decision.

I wish you well.

AmyQ

Renabell

I am so sorry for the loss of your precious mother. I feel your pain and certainly understand your wish for privacy. You do not owe an explanation to anyone outside your comfort zone. I wish you luck and pray for healing.

LAstar

I told lots of people right away. Looking back, I'm not sure why I needed to broadcast it to my community but I guess that's how I process things. I bent every available ear during the process of figuring out my path, and it helped me. The downside is the pity face I would get a lot from friends or the occasionally accidentally-insensitive comment (how many of those have I made myself?), but that was worth the help I got, which was overwhelming and wonderful. I can start crying to think of how many people brought meals, watched my daughter, kept in touch, helped with my drains after surgery even. My ex and his wife came and cleaned my house for over 3 hours. I feel like telling my community gave them the chance to show me how amazing they are, even more than I realized. That said, this is YOUR experience and you have to handle this in the way that works best for you. It's the time to be selfish about yourself. AmyQ, is spot-on. You don't owe anyone an explanation. A breast cancer diagnosis, and a significant loss, can make us feel like we have no control over anything, but you can control who knows about your diagnosis and is on your team. Your surgery is over and the radiation will be quick. Hopefully you will have this behind you quickly and can start looking ahead. I wish you the best and hope you can find some spark of joy in life again.

FightBC

Sorry for your loss!

It is totally personal choice. You should be the person who should decide who to tell and who to not.

Mine was DCIS. No chemo. So, I was out for month and half. I lay low! and Except two friends, manager and couple of colleagues, nobody knows.

My husband did not understand why I am not sharing this with my best friends and relatives. But I did not feel like.

Also, My parents are old. Other than worrying, they won't be much help. Kids are too small to understand. Kids think cancer == death. So, they don't know either. These four people are the most important part of my life, but they do not know.

I just don't feel like sharing this news anymore. It is been an year soon.... Dreading the mamo test.

Anyways, I just want you to know that it is very normal, and you don't have to tell people if you don't fell like.

alizbeth

I am very sorry for the loss of your mother.

I was similar to you and chose not to tell many people. I told only my immediate family, a few friends who I knew would be willing to help watch the kids, and two of my work colleagues who needed to know. My husband, on the other hand, told quite a few of the people he works with and some of our neighbors. He has a hard time keeping things in, so while annoyed at first that more people knew than I cared to know, ultimately, I understood that he needed to deal with this his own way. My joke was/is you were more likely to know I had cancer if you knew my husband than if you knew me.

Now that I am done with treatment, sometimes there are a few others I wish I had told so they might understand why I am no longer willing to take on as many volunteer commitments, etc. Awe all know, we reevaluate what we are giving our time to after we have had this diagnosis.

mefromcc

jwilco, you hit the nail on the head. You tell people about some health problem you have and you get all this old wives tales or the horrible complications they or someone they knew had. I only had one friend that asked what I had done wrong to get the cancer.

alizbeth, your husband sounds like mine. He didn't understand why I wasn't telling people, but we talked about it and agreed on a time table for when we would release the information.

Renabell

Thank you all for your responses. I enjoyed reading them all.

I am headed to radiologist for first appt. in a couple hours. For some reason I am more nervous than I was when I went in for my surgery.

I already know they want me to have the MamoSite 5-day therapy. I have been reading a lot about it and still undecided. After reading some posts from people who chose this therapy I am even more anxious. I know everyone is different and I am trying to tell myself just
because someone else had a bad experience does not mean I will. I have always believed you needed to be proactive in your health care
but darn it this is huge.

I also feel like a 2 yr.od whiny butt. I think how dare me come on to this board. I just have DCIS and supposedly it is all gone. There are
others on here who I know would love to have my diagnosis.

I am praying for clarity to help with this decision today and for some sense of peace with a decision.

Will we ever have a sense of peace again??

LAstar

I've found the decision-making process to be in some ways more grueling than recovering from the treatments. Physical discomfort is real and we have pharmaceuticals that help us get through it, but the imagination is endless. The waiting is awful but I drive myself nuts with weighing options. I feel a sense of peace when I finally make my decisions (and elation when the treatment is behind me!).

Don't we get to be whiny-butts too? DCIS may not be life-threatening, but it is life-changing.

Best wishes for your appointment. Remember that the folks who had good experiences with mammosite rads probably did not come back to this web site to report. What we tend to read here are the worst-case scenarios. The folks with successful treatments are out enjoying life! May we join them soon!

april485

Amen LAstar! We do indeed get to be "whiny butts" because hey, we still have to have treatment that is life changing and in some cases, debilitating!

Hugs to you Renabell and RANT ON SISTER!

mefromcc

I am on some other threads here that include people with higher stages which keeps me from being a whiny sister, but I agree, April485, if we aren't "real" then why a BS, MO, and RO? Why are we required to make all these life altering decisions? Why are there no guarantees we won't have it come back and be a higher stage? My mammogram showed the calcifications, which the biopsy removed, while the MRI following showed nothing, yet the lumpectomy after that showed more DCIS. I certainly think we have a right to whine.

It is nice that this board has sections for the different

types , isn't it?

momallthetime

Hi, just to chime in, my daughter is 31yrs old, a mother of two young children, and we choose not to tell anyone, only her sibs know. We found it might be to taxing explaining to e/o all the time, what, when and why. Yes, it may have been a little harder to dorganize picking up the children from school, or dinners on difficult nights, but thank the Lord we've been managing. She doesn't wanna get the pity glances, and ppl would always be judging, she is too sad or too happy, it gets to be a handful. She does her dance, and the rest of the time not one of us, is allowed to talk about it, life goes on, even in hard days around here. I guess it's the only way she found to cope. And so it goes. And, of course, you are entitled to your nervousness, you earned it. It does not have to be a death defining moment to be serious. You are right to be worried, and do look after yourself. If i might advise you, make sure to keep up with all future appointments, and if you ever will feel something, don't worry about "sounding" whinny, look into it. Please.

Ariom

I have been here for nearly 2 years and have read so many interpretations of DCIS. Yes, I am glad that it was my Dx over the others, yes, I am forever changed, because of it, but I will never, underestimate it.

I really don't understand why there is so much angst over this Dx and how it should be viewed. I know I have mentioned this before, but is someone who has a double bypass viewed as a lesser heart patient, than someone who has a quad or quintuple bypass? I don't think so!

I really like your line LAstar, It may not be life threatening, but it is life changing! That sums it up.

exbrnxgrl

To tell or not to tell has long been debated. In the end we all do what we feel most comfortable with.. I will say that if you do tell people, you need to be prepared for varied reactions. The vast majority of friends, family and colleagues were wonderful. One person broke down in tears and I had to comfort her. Pity? No, I got none of that, but I think it's because I have always spoken of my bc very matter of factly, and often with irreverent humor. These things are consistent with my personality, so it let everyone know that I'm still me. Yes, sometimes explaining the complexity of bc was draining, but I understand that if bc hasn't touched your life, you probably have no reason to know about it. The great upside? I had so much love, support and help when it was most needed and I never feel like I'm carrying a secret or protecting any part of my situation from the world. The humor is also priceless and a great healer. Again, this is me and we all need to do what we're comfortable with.

mefromcc

Exbmxgrl,

I tend to also use irreverent humor in my social conversations. Somewhere along the line, I mentioned that the amount of belly fat will determine my cup size when I have my DIEP next year. My PS said I have enough for B cups (my presurgery size). So my husband offering me seconds has commented on making it to D size.

Saturday night we went out for our weekly dinner with four other couples. I was full, and was going to take part of my t-bone home and both the ladies on either side of me told me I had to work on those D cups. I'm sorry, but I found it funny and we all laughed.

exbrnxgrl

laughter really is the best medicine. At stage IV, some think my irreverence is in poor taste but I refuse to be somber about it! As I said, no change from who I always was, and I can poke fun at my disease if I want to

LAstar

I love your panache, exbrnxgrl!

Renabell

Thank you so much for your awesome post. My appt. went very well today. I will start whole breast radiation on both breast
Dec.8th for just 3 weeks. I feel so much better after talking with the Dr. I was apprehensive about the MammoSite therapy from
the beginning and feel really confident about the whole breast radiation.

The Dr. stressed that chances of it coming back were very low.He said if I was older they probably would not even treat it.
I am 54 btw. He said they realize now that they were being overly aggressive treating DCIS in the past. My breast Dr.
had said the exact same thing.

So I feel a relief and am ready to get this over with .Come 2015 I will be Cancer free!!

LAstar

Yay for leaving cancer behind in 2014 and good living ahead in 2015!

MountainHiker

Renabell, I feel for you. Being diagnosed and all that followed was a real shock to me.

It is totally your decision how many people you want to tell.  When I was diagnosed, I was pretty public about the diagnosis, but I gave no details except that I expected surgery.  I was wonderfully supported by friends with dinners, cards, etc through my first and second surgeries (the second was to remove a bit more skin to obtain clear margins).

After that, I wanted to "move on" mentally beyond dealing with breast cancer, so I have not divulged any of my additional surgeries except to a handful of close friends and family.  (I'm totally open with anyone else who has/had breast cancer.)  So far, I'm happy with my decision.  DH and I have to plan ahead, but eating frozen meals is worth it to me -- we can make do with just one or two friends helping out, and I don't have to face bc conversations from well-meaning people in the rest of my world.  (I might have decided differently if I still had small children to care for.)

I liked the idea of only sharing what I was comfortable with. I knew I could always share more if I changed my mind.

Praying with you for that guidance and peace!

quiltlibrarian

I have say that I have not told a lot of people about my dcis. One of the first people I told was negative and it was hard to tell anyone else after that. Only family and a few friends know still about this.

 

Hugs to all