Reaching out for support...

Dear Dede - I'm so very sorry you're here. I know what a shock this diagnosis is and I feel for you.

To address just some of your questions:

You don't HAVE to tell anyone and you can choose your own time frame for doing so. This is private information and you need to think about how your want to approach it and with whom. Many of my friends and extended family do NOT know about my diagnosis and that's due to my preference. The support of other family members or friends who have dealt with cancer (any cancer) CAN be valuable but I would approach each case individually.

If you can take a recorder (your smart phone, for example, using the recording function) to your appointment tomorrow that will be very helpful. At the very least, try to take someone clear headed that you would be comfortable having with you. Their role is to LISTEN and take notes. You are very likely going to miss some of the details; your companion's role is to catch as much as possible.

You should receive a copy of your pathology report - ask for it, as well as any other test results. Start a file TODAY so that you can put your hands on all your info easily.

It's great that you have an appointment tomorrow, as you'll learn more about your status and options for treatment as well as recommendations for specialists (breast surgeon, medical oncologist, radiologist just for starters). Do NOT let yourself be rushed into anything or choosing any one provider. With all the great facilities in Minn. you should be able to put together a team that YOU feel comfortable with and confident in. DON'T RUSH!!

There are good recommendations for questions for your first appointment on the main portion of this site. I'm sure others will chime in with suggestions, too.

All I can say is that, while this is horrible to go through, it does get easier with time. Ask your MD or NP for ativan or xanax if you're unable to sleep, function, focus. You may not need it for long but it can help a lot in the beginning. Once you know where you stand in terms of state, treatment and team you will find it not as dire and overwhelming. In the meantime, please let us help you as much as possible. We've all been in your shoes and most of us made it through in large part due to the support of the kind women on this board. Hang in there.

Hi Dede - So sorry about the devastating news. It is shocking and horrible. People handle telling others in a variety of ways. Some tell very few people. Me, I told everyone, even when I was walking my dogs I would stop people on the street and tell them. I guess in my desperate search for "why" I thought they might be able to help. You'll figure out the best way to handle it for you. You will need at least a handful of people to walk with you. Hopeful has great suggestions about that.The information on the main pages of this site is excellent and I highly suggest you study that if you feel like it. Some people like to know very little, others like me want to know every single detail.

Our lives are changed the moment we hear that diagnosis, but that certainly doesn't mean our lives are over. The vast majority of women on this site are living happy and productive lives, regardless of their stage. There is unbelievable strength here. I found my first BCO "home" with the February 2012 Surgery Sisters. Right now you are thinking about BC all the time, right? We all did. Things start to improve as we find out our treatment plan, but recovery (physically and emotionally) has its own timeline and it is probably slower than you'd like.

Private message me anytime if you need someone to talk to. I mean that completely. The women who reached out to me were a lifeline and I treasure them. We're all sisters now.

Gentle hug.

Hello Dede, Only you can decide when you want to tell your family and friends. For me I did it on a need to know basis. I live alone away from my family so I had to find support in other directions. And that is why I am here. I tried to tough it out alone, but some days I just needed to reach out. I already had chemo, and my Nurses were a goldmine of information. They know all the tips to get through chemo and help you with the side effects. And it helps to learn as much as possible since everyone is different. I am Triple Negative as well so a little more challenging to fight.

I have a small notebook that I take to appointments that I list all of my questions in. That way I don't forget them. I also have a small soft side cooler with pockets that I carry with bottles of water, pens and paper, kleenex, lip gloss, hand sanitizer, and small snacks to keep me occupied if I have to wait anywhere. Just makes my life easier than trying to shove it all into my purse.

Good Luck, I hope everything goes well!

Dear Dede, so sorry you are here, but welcome. I joined last month and have learned so much from these strong people who cared enough to share their experiences and knowledge. I am so glad you contacted this discussion board. Hopeful has already given you some good advice and more will follow.

Be sure to check out the "Help With Abbreviations" on the upper left side. I had a heck of a time figuring out that DIL meant daughter-in-law.

How old are your children? My five are grown and their responses have all been different. One meets me at the door when I arrive from a medical visit, one wants to ignore that anything is wrong, the DIL in Indiana gets everything backwards yet she is texting encouragement all the time, while the other DIL is so worried she doesn't know what to say so she says nothing, and the two married sons are so busy with work and family they are apt to send only one word texts.

I shared everything with my DH and kids because I was determined to be this strong, informed, in control patient and presented the facts of my situation as if it were a class in anatomy. Once I found this site, the facade fell away and I have cried and ranted and laughed with others who truly understand.

I'll be waiting to hear how your appointment goes tomorrow.

The more ears when you talk to the oncologist, the better.

I'll just pop in with my 2 cents. I've told everyone because I think that keeping secrets is far more of a burden. I will say that had I been working, I would have not told people at work. Who knows how that would affect your promotions and raises, so I would not take that chance.

As far as friends and family, I've told everyone. This way I don't have to worry about who I've told what story to and it is extremely freeing. If anyone looks at me funny, I certainly don't perceive it. People have been nothing but kind and generous, hauling me here there and everywhere and furnishing food when I needed that. I have no regrets at all about telling everyone.

That said, it is a personal decision and there is no right answer.

Dede, I am so sorry that you have received this DX. First of all, you are not going to die of this any time soon, this is a very treatable disease. As for telling others, I did it on a need to know basis. We did not tell my kids (19 and 15) until after thr first Dr appt. I just felt like I need a plan in place and as little uncertainty as possible before telling them. After immediate family, I did share with close friends. You do need their support! After that it is really up to you. I did tell my co workers because I didn't want them to think that all the appointments, days off, etc. was because I was looking for a new job. I think you should plan on telling people as you feel comfortable. Unfortunately, I needed chemo, and that is hard to hide. I don't regret telling the people I did tell, the support that I received has been amazing. I did choose to avoid impersonal and very public ways of sharing such as Facebook and by putting my name on the prayer list at my Church.

Talk to you doc about the vacation. Believe it or not a few weeks delay here and there is usually not a problem. Many younger women with BC take the time for fertility treatments to harvest eggs prior to treatment.

Good luck to you!

definitely go to st. marten

I love that approach, Professor! It is hard to tell other people, especially in the beginning when you can hardly say the words, so why not let the gossip mill do the work for you?

I will admit that some of my reticence has to do with sheer vanity. I'd been working out a LOT all summer and, while I was slender before, had gone down another size and a half. I was thoroughly enjoying all my friends' comments about how great I looked and how did I do it, etc. - you know the drill. When I was diagnosed I realized I did NOT want people to to attribute my skinniness to the fact that I was sick. I worked hard to get that way and by heaven, I intend to retain full credit for it. How's that for shallow?

Dear Dede,

I go along with those who say you should go ahead with the trip. Not because you won't have time later on! You will be around for a very long time.

Also, I'm sure someone has already said this, but I'd like to reiterate that once you have a treatment plan in place you will feel much better.

Find the joy in each day.

Brenda

Hi Dede, you are so right, knowledge is power! I am so glad that you are sounding better already. Your plans for New Years sound great, and the vacation will certainly relax you while you tan. The rest can wait until you return.

I am triple negative with a larger tumor so the mastectomy was my only choice, and I am fine with that. I think a very small price to pay to make sure that it is all gone. They had clear margins and I had 0/5 nodes involved so great news. We had planned to do immediate reconstruction but the PS wanted to do some rearranging of the skin so the reconstruction will have a better result. So that I can deal with later after I heal. Being triple negative I thought the mastectomy was the best chance I had.

I had a real hair wig made before I started chemo. A rather large investment, but in the end it was close to my yearly expense for real hair anyway. But I love it, I get a lot of compliments on it, and I don't have to fuss daily. But I can still wash, blow dry, flat iron like I used to but only once a week! So that was a great choice for me. I just can't wear hats or scarves. I drank a lot of water, ate a lot of fruit, and watched my meds carefully. I write them down daily. I was working so I had chemo on Tuesday and went to work at 3. I worked the day after 10 to 8, and kept Thursday and Friday to crash. That worked out great since the chemo reacted the same every time. But it did get better every time for me. My nurses told me to give my body what it wants when it wants it, and take the meds at the first sign and get ahead of it. Great advice! I worked 42 hours a week to the end of chemo. It kept me going on a routine, kept me busy, and I slept the rest of the time.

If you have questions when you back from the vacation, please ask!

None of the specialists I saw advised a mastectomy although all pointed out that I could choose either procedure. For lumpectomy with radiation the survival rate is all but the same. Neither procedure guarantees there will not be a recurrence. Mastectomies are major surgeries and I'm something of a minimalist; if I were advised to do a mastectomy for valid reasons I would do so, but my first thought was lumpectomy and that is what I plan to do in April.

dede - read this thread regarding lumpectomy vs mastectomy - particularly Beesie's post early in the thread:

https://community.breastcancer.org/forum/68/topic/806074?page=1

Hi Dede,

we share the same diagnosis and I think most of the feelings.. Calling it an emotional roler coaster is very fitting..  I had the biopsy done but at the time of my firts onco appt they didn't have the full report yet. That was disappointing as we couldn't discuss the treatment options in detail. I have my MRI of Monday along with sono and biopsy of a suspicious node. If positive  - PET scans. And because of these holidays I still don't have the full report. The waiting sucks.

I think you did the right think in deciding to travel. You may not be able to fully relax but beats sitting at home and wondering

I have told my parents but waited until after Christmas.. not everyone has to have it ruined like me. I told the kids (12 and 10) also after holidays as they kept asking me why I cried so much. I tried my best not to do it in front of them but it wasn't always possible, especially when before our Christmas dinner my 10y/o prayed that "no one in the family would get cancer".. I also wanted to wait until we had all the facts but then he came to me and said "I put two and two together.. you have booboo on you boob after going to the doctor.. Do you have breast cancer??" I couln't lie. I tried to keep it from friends but then I had some calling me if everything was ok after we met, they were "getting bad vibes" etc, so I told the few closest ones and told them not to share. At work I plan to tell only on need to know basis, probably the bosses but I'm sure everyone will find out eventually...

I'm also debating on lumpectomy vs mastectomy even though I don't have the details yet. I think I lean towards bil mastectomy just to reduce the anxiety every 6 months. It also feels that most women on this and other forums who first underwent lumpectomy with radiation ended up requiring the mastectomy anyway but I could be wrong.

I also feel bad for my husband and I cried a lot before telling my mom. Somehow I feel guilty to be putting them through this. I think my worst fear is not so much of dying but leaving my kids and husband on their own.. They are too young and I can't even imagine how hard it would be on all of them.. Anyway, I try to stay positive most of the time and reading on these forums have given me so much hope. I also joined a local one through my doctor's office. It is run by survivors, nurses, etc, ages between 20 and 45 from my and neighboring towns. They meet once a month and have a private FB page full of good advice. Maybe you can look into something similar.

Enjoy your travels...