Thanks for the welcome, Colleen. Tell us a bit about yourself - would love to know more.

Okay Heather, I'll get things started. My name is Colleen Young and I'm the editor of SharingStrength | FortesEnsemble a bilingual site for women with breast cancer. At least, that's the title that we used back in 2007 when the site first started. Now the title community moderator or community manager is more common.

It has been an incredible experience sharing, informing, connecting and, most of all, learning on SharingStrength. I look forward to expanding my network on CancerConnections. Thanks for welcoming me here.

You can also follow my CancerConnection blog where I'll share about my experiences of being a community manager and using an online health community/social network.
Colleen

Thanks Colleen. How about others? Tell us a bit about yourselves...

I am a breast cancer survivor (nearly 8 years).  I had a mastectomy, chemotherapy and radiation.  I have been a Peer Support volunteer with the Canadian Cancer Society for the last 6 years.  I am looking forward to any discussions that might appear here in this forum and connecting with others who have been touched by breast cancer.

Hi Winnie and welcome. Let's encourage the other breast cancer group members to introduce themselves here to get things started.
Colleen

After annual mammograms for several years, something appeared in November 2009 that required a biospsy....it was done the end of January 2010....results in February showed early stages of DCIS cancer in the right breast....it was removed with sentinel nodes in March 2010...April the results came back with nothing in the nodes....so on tamoxifen for 5 years with no other treatments needed....very happy to have had an early detection! Awaiting an appointment with plastic surgeon in July 2011.... to understand my options for reconstruction and possibly remove left breast at the same time....I was lucky to take part in an 8 week session with gals with a variety of cancers and a 12 week online support group of just breast cancer gals....both I found helpful.... as I waded thro this new health journey....looking forward to using this site as more support.... as I continue my health journey.... Duchess

Hi Duchess. Glad to have you here.
Colleen

Hi - I'm not sure I'm posting in the right place - this discussion board is a little confusing. Anyway, my name is Allison, and I just learned yesterday that I have a Grade 2 invasive ductal carcinoma. That's all I know at this point, I'm going to be meeting with my doctor on Tuesday to learn more. It's not my first go 'round with BC. In 2004 I had a double mastectomy followed by reconstruction after learning I had a multifocal DCIS in my right breast, and opted for the mastectomy because of family history. The sentinel node biopsy was clear. I had no radiation or chemo, just surgery. Four years later I had a recurrence of DCIS in the same breast, and that lump was removed. Now I have the invasive form. Naturally, I'm frightened all over again and a little angry. Although I was never promised that mastectomy was a guarantee of a "cure", here I am on my second recurrence, with the second more serious than anything I've had before. I haven't told anyone yet (I'm single, live alone, and my only family member, my brother, lives in another city. I want to get more information about next steps before I tell him). My best friend is out of town for the weekend, and I don't really have other people I feel comfortable telling about this at this point. So I'm feeling pretty alone right now.

Hi Allison, you're right this discussion board is a bit confusing, lol.

I'm very sorry that you are going through BC yet again, but please know you're not alone, we're all here for each other. I remember the hardest thing was telling my family. I had to tell my Mom right away because she was standing right outside the doc's office when he told me. I couldn't tell my brothers or my Dad, just couldn't, so my Mom told them. 

I was diagnosed in 2005 with DCIS, it was very small so I had a simple lumpectomy done followed by radiation. That was on the right side, but I had initially gone to get the left side checked as I had found a lump, they told me the left had nothing. They were wrong, when I was finished my radiation treatments nearly five months later, they did another MRI just to be sure, and found a tumor in the left. I had a lumpectomy done, the pathology was done and the cancer was on the cut line so they did another MRI, this time it showed three more in the breast and one in the lymph node. Then I had a radical double mastectomy. Chemo then radiation. My last treatment was in Feb. 2007. Last March I finally had reconstruction and that's still ongoing?

When you had your double mastectomy did they take everything? What kind of reconstruction did you have?  I'm so sorry you feel so alone right now, I'm sending you a big hug right now!

Hi, my name is Andy. I am a 38 year old man who was diagnosed with Infiltrating Ductal Carcinoma in December of 2010. I had a mastectomy of my right breast in February and am scheduled for another surgery in two weeks to remove more nodes. After that I am scheduled to begin Chemo and Radiation treatments in early April. Only my immediate family and closest friends know what I am going through. I'm really scared of what is going to happen to me...

Hi Andy
All of us were/are scared but it will get better I promise, if it continues to control your life then speak to your Drs. about this. I needed antidepressants to even out my emotions (I cried alot) even over 1 year after treatment I tried going off them or just lowering the dosage and NO WAY the tears came back.  After talking things over with my doctors they told me I was normal and its normal to be scared s***less. We have cancer!!! I say tell the world that you have breast cancer because yes men can get BC too. I don't think everyone knows that and now is the time to educate them.  I have inflammatory breast cancer.  I didn't even know there was such a thing until I woke up one morning with it. For everyone please google IBC. I had to have 6 months of chemo before surgery, then MRM then radiation. I have a 95 % chance of a reoccurence because of poor response to chemo but that's because of my type of cancer. I am sitting here at stage IIIc post treatment but am at 18 months NED (no evidence of disease) that's the best IBCers can get. We can't get remission or cured like other cancers like yours Andy. So keep your chin up, embrace your baldness and know that there is a great many people out here for you just reach out. to them.
T. the IBCer

Hi Duchess - I had a bilateral total mastectomy after being diagnosed with DCIS in 2004.  I didn't have chemo or radiation, and so I was able to begin reconstruction immediately following the mastectomy (same operation - the breast surgeon tag teamed with a plastic surgeon).  I had tissue expanders implanted and five months later (when I liked the size they'd been inflated to  LOL!) I had the cohesive gel implants put in.  About a year after that I had nipples created, and a while after that I got the areola tattoos done.  I'm happy to talk to you about my experience with this type of reconstruction if that's what you're considering.  Unfortunately I've just been diagnosed with invasive ductal carcinoma so if I need radiation I'm not sure what happens to the implant on that side.  I heard radiation can ruin the implant - does anyone know if that's so?  Anyway, more word on treatment options in the next while I expect.

Thanks Cheery - I've had a couple of days now to process the news and while it still scares me I have a wee bit more perspective than I did on Friday and Saturday.  Going for a run with my running group this morning helped to clear out the cobwebs a bit.

They did a bilateral total mastectomy on me, so just the tissue from both breasts and the sentinel nodes on the right side (the side of the affected breast).  (I wasn't aware they still did radicals). I opted for the bilateral mastectomy because my mother had died of breast cancer (they found hers through bone scan in 1992, so sadly she was already very ill when it was discovered).  I had tissue expanders implanted during the same surgery as the mastectomy, so I woke up with boobs of a sort.  Over the next five months my plastic surgeon injected small amounts of saline into the implants every couple of weeks or so until I got to the size I wanted to be, then I had the teardrop-shaped cohesive gel implants put in.  Some initial complications with the left one (it kept flipping upside down - I'd often find it that way in the morning) but it eventually settled down by itself.   Nothing like waking up in the morning with your left tit upside down. ;-)

So yes, this new thing scares me since right now I know so little and I imagine the next step is to stage it - another frightening thing.  I'm hopeful, though - I have garden variety BC, apparently, and if it turns out to be the kind that's responsive to hormone or targeted therapies so much the better, or so I've been able to gather from what I've read so far. 

Hi T.,

There is a lot us us IBCers on facebook.  Come and join us on IBC/BCmets and on Cis Fortes.  I also have invited them to join here on cancerconnection.ca.

There is also a great e-mail support group did you heard about them?  http://www.ibcsupport.org/

If you need more info send me a message (click on my profile pict and choose "send message".   I will be happy to talk with you.

Amicalement.
Suzanne

Thank you for your kind words. This is all so new to me and everything is moving so fast it does get overwhelming sometimes. I couldn't even say the word Cancer for the first few weeks much less tell anyone that I had Breast Cancer.

Morning Allijay,
Wow....at the moment you have you plate full.....keep postive thoughts ...you are in it again....once the plan is in place....you will get through it again!
Thank you for offering to tell me about your reconstruction....I would appreciate hearing what things to consider when talking thro my options with the plastic surgeon...also how did they find your recent diagnosis? After implants....are mammograms still done? How does that work? Thanks.
Remember you are not alone. 
Look forward to hearing from you again.
Duchess

Andy,
Thro cancerconnection....you can be matched with a volunteer with the same type of cancer as you and they will visit with you on the phone....I had two gals call me before my surgery and after and found it most helpful....hopefully there would be a fella with your type of cancer volunteering and he would be able to give you support thro your treatments.
We each handle our health journey's differently....mine was detected early....but feel I need to promote yearly mammograms to all....so other woman can have the success story...I was lucky enough to have.
I was able to take part in 2 support groups....one in person with different cancer types and one online with breast cancer gals....I really appreciated talking with other cancer patients...perhaps there is something available in your area.
Also, I was also fortunate to have local breast cancer survivors speak with me before surgery and was so appreciative to hear their stories and have them answer my questions....it helped to keep me focused and not leave me with so much unkown...Now I am pleased to pay it forward and give hope to new cancer patients.
You are not alone...You are in it....you have a plan and you will get thro it!
Duchess

Thank you Duchess, I appreciate the kind words and support.

It is so difficult to find information about Mens Breast Cancer. There is a gentleman in England who published his story about his fight. I found it to be very inspiring and I have read it at least 50 times. He posted his post-surgery picture and it was the fiirst picture of a man after a mastectomy that didnt totally scare me.

Hi Andy,

Have you looked at this forum, its only men. Here is the link.
http://community.breastcancer.org/forum/51

hugs,
Suzanne

I'll check it out. Thanks.

Hi there.  I am Teklya and only just joined and registered here.  I am healing from breast cancer and all the treatments I received. Hope all are well

Hello all, I am Ruth C from Michigan.  I understand that this is predominantly a Canadian site, but I am reltively close to the border. I have Inflammatory breast cancer, a rare but deadly form, so I figured that there aren't too many of us and others across the border may be seeking help and advice from other IBCers. I am a 5 yr survivor, thus far NED (no evidence of disease).  I am glad to place myself out there for any questions, and to be a part of this group!
Thank you
Ruth

Yeah, in it to win it! ;-)  Thanks for the encouragement.

I just spent some time with my surgeon and an hour bawling my eyes out at the counsellor's office.  No, I didn't hear anything new, but all the pent up emotion over the weekend just kind of spilled over. Oddly, I feel a lot better now, with some venting and a bit of perspective.

The cancer has infiltrated the pectoral muscle in the region of the tumor, so I'm to undergo surgery to remove some more of that tissue and the sentinel nodes.  Even if the margins and  nodes are clear, I'm told I will still most likely get chemo as well as a bone scan.  I'm glad they're being thorough, but the bone scan scares me, since that's how they found my mother's cancer.  The counsellor really helped put things in perspective for me though - they've come a long way with treatment in the eighteen years since Mom passed away (Herceptin, for example, didn't exist then), and just because that's the way my mother's cancer went doesn't mean that's how mine would necessarily progress if left on its own.  (Interestingly, the genetic link from mother to daughter isn't as robust as I thought, and a daughter's cancer isn't necessarily going to be of the same type as the mother's.)  So now I'm just waiting on a surgery date, and I'll take it a day at a time until then.  I've already had my bloodwork done.

So that's my update.  Duchess, I just started a new thread on breast reconstruction, so I'll answer your other question under that topic.

Allison

Duchess, I forgot a couple of your questions.  I found the most recent lump and decided to get it checked out.  A benefit of mastectomy:  recurrences tend to be obvious since there's very little breast tissue left to hide in.  A new lump will be just under the skin and felt when it's small.  Even with implant reconstruction, the implant is placed under the big chest muscle (pectoralis major) which the breast normally sits on top of, so any recurrence will probably show up between the skin and the muscle, not the muscle and the implant.

I did continue to have annual mammograms.  They basically squish the implant to your chest wall and x-ray the skin and muscle on top of it.  After my first DCIS recurrence (which I also found myself), they began doing ultrasounds and that's what I've had since.

Good for you to have access to a counsellor.....that will help to wade thro your feelings with all the information overload.....
Your health journey will take on another process....each step along the way requires tests....each competed test..... gets you to the finish line.....You have lived thro some tough stuff already and you will live thro this latest cliche in your health journey!
You are not alone....your sista's with bc are all pulling for you!
Hugs to you.