Just Diagnosed and My Head is Spinning - I need Encouragement

KCMC

Hi: I recently posted in the Worried Posts. I am 47 years old and I just got my results back today and I was diagnosed with IDC. The tumor 1.3 cm was found during a self examination. My next yearly mammogram was scheduled for four weeks later. I knew the news was not going to be good, so I already purchased a notebook, binder and a monthly view calendar (advice I read here, thanks!) before I had my results. Believe it or not I am already filling it up as of today.

At the moment I am being treated at a Military Treatment Facility. My biopsy was sent down to Walter Reed Hospital and processed there. It is Estrogen and Prg positive. HER2 is pending. My surgeon suggested that I have genetic testing done for the BRCA gene which I scheduled today for April 7. The Tumor Board at Walter Reed is meeting in a weeks time for treatment suggestion. My doctor explained to me he doubts it has travelled to my lymph nodes but will do a sentinel node biopsy removing 3 nodes. He also suggested that I remove my IUD as soon as possible. I will try to get that done next week. He thinks they will suggest a lumpectomy with radiation and 5 years possibly or 10 of Tomaxifen.

I met with the dr's nurse who is a breast cancer survivor. She was diagnosed with ILC in Situ and opted to have a double mastectomy no radiation or chemotherapy and is on daily tablet (I forgot the name) for the last 4 years. She explained to me that I should have no problem being treated in the Military Treatment Facility but if I decided to have a mastectomy, I should move on somewhere else since they do not have a plastic surgeon on staff. They seem to know what they are doing so I am comfortable for now. If it gets any worse, like I am BRCA positive I will move on outside the Military. I am trying to keep a positive attitude and my surgeon said this is just a bump in the road for me. I hope so. Just typing all this out is helping. One step at a time and keep breathing..... Thanks for reading.

ElaineTherese

Hi!

Well, you're certainly more prepared than I was at my initial doctor's appointment!

So far, it sounds like you have a fairly straightforward case of early stage breast cancer. You have the most common variety (IDC), and you are ER+/PR+. If you are like most BC patients, your cancer would be HER2-. If so, you can proceed straight to surgery. After surgery, a sample of your tumor would undergo an oncotype test to determine whether or not the benefits of chemo outweigh its risks. Then, it would be on to hormonal therapy (Tamoxifen or an AI).

If you're HER2+, things become more complicated (see my signature for what that might entail), but even HER2+ cancer is very treatable these days.

Deciding on surgery can be a big decision. There are a number of threads here that weigh the lumpectomy/mastectomy/double mastectomy options, as well as a number of threads that discuss various reconstruction options. I was lazy and just got a lumpectomy. If the cancer comes back, I can always have a mastectomy. But, once a breast is gone it is gone.

((Hugs)) I was pretty sure I had cancer before I knew the results, too. But, it's still hard to hear the results confirmed!

KCMC

Elaine my head is spinning lol! I was hoping for just a lumpectomy, I am a bit lazy too! One lucky thing is I am not currently working. My husband just retired and I was going to start looking for a full time job, my kids are 10 and 12 but this is now going to have to be my full time job. I am going to start searching all surgery options you stated above. Thank you so much for responding, it really means a lot to me, to know I am not alone and that there is hope.

thank you.

ElaineTherese

Yes, you are lucky you aren't working right now! That will allow you to do more research, and to commit to reconstruction (if that's what you want). I work full time, and have two special needs kids (autism). I really didn't have time for reconstruction (which can involve multiple surgeries), and a lumpectomy (golf ball-sized amount of tissue removed) did not have much of an impact on my C-cup breast. If I'd been smaller (A-cup) or had multi-focal cancer (at least two tumors spread out), I might have had a mastectomy. But, I was lucky.

Yes, there is hope! What's amazing about BCO.org are the Stage IV ladies, living fully despite the uncertainty of their futures.

KCMC

Elaine: Its funny because sometimes I thing things happen for a reason, I too have two special needs boys, things are running smoothly for them now, at least the last year and a half. I have a semi supportive school district and just had their IEP meetings last week that went well, I feel sometimes I have to fight for every accommodation or help they need, but this time it went smoothly for both boys, no fighting no dukes out lol!. I am not a very religious person but I prayed to my mother to send me some signs this might be okay and I came across a $20 bill that said pray to St. Jude. She always prayed to St. Jude, the Saint of hopeless causes. I prayed again and today I received an invitation for the Avon walk for Breast Cancer from Bear Mountain to New York City for the Breast Cancer Walk. My husband said this is a sign and we are going to do it! Again, I am not really a religious person, but this seems to be a bit more than a coincidence. This is my job and I am going to do my research. The boys are doing well. My husband is no longer active duty and if this had to happen at the best time this is it. So I am lucky, gonna do my research and use this time wisely. Thanks so much for listening, I really appreciate it. It's people like you who make it easier for people like me. There is hope. Thats my new mantra. xxoo

SpecialK

KCMC - I was also diagnosed not long after my husband retired from 28 years of active duty military service. My original workup was done in a Military Treatment Facility, but because they had no surgery capability the remainder of my care was handled by civilian providers. If you have any specific questions I can help answer please do not hesitate to ask, including the ins and outs of Tricare.

KCMC

Thank you Special K I just might take you up on that offer. I know that Tricare can sometimes be a godsend and sometimes not. I really appreicate it. You may be hearing from me.

SpecialK

KCMC - please, ask away - I'm here. I have almost no complaints about Tricare - I had 6 rounds of chemo, Herceptin for a year, and a lot of surgery - thanks to Tricare my out of pocket was minimal and I see docs that are amazing, knowledgeable, compassionate, and helpful. There are some ways to minimize the hassles associated with needing referrals, so I am here to help.

JSilb

The hardest part for me was after the biopsy came back, and I was waiting for my surgery date. It is completely normal to be terrified and overwhelmed. I promise it gets easier. After the initial diagnosis, I just wanted the surgery over so that I could feel like I was doing something about the cancer instead of waiting in limbo. Once things fall into place with appointment dates, the surgical biopsy report, and any follow up treatment (if you need it), you will start to feel a little more in control. I was diagnosed at age 46 with DCIS in the right breast with lymph node involvement and IDC in the left breast. I am over three years post diagnosis, and over time you learn to carry all of this in a way that doesn't weigh you down. It is a difficult and scary thing, but I promise you will get through this. don't be shy about reaching out. No one wants to belong to this club, but you won't find a more supportive community. Sending you hugs and prayers.

Anonymous

I would like to chime in and say that you can do it! We all did, and you can gather your own strength from ours, use our knowledge and our support as your new bc "sisters" (and some brothers, too, unfortunately). Let us know your pathology report as soon as you get it, and fingers crossed that you get the best possible pathology you can, after this initial dx.

Hugs,

Claire in AZ

cive

KCMC:  You seem to have an extremely positive attitude.

I'm sure things will work out well for someone like you who adapts.  

cliff

when you are hunting for information, beware of the internet. there is a lot of old stuff out there, and downright scary stuff. this website seems to me to have the most accurate up to date info, and the most knowledgeable group of people. if ou go to the other stuff, you could get bad info, I did, after my diagnosis of invasive ductal carcinoma, stage 4, so scarry I almost did something stupid. tat was a year ago, and I am still around, my cancer is fading with treatment, and that's a lot better.

KCMC

Hi everyone, thank you so much for all your positive encouragement. I have been off the computer for a few days, my cousin just passed away from a heart attack. That event kind of put everything into perspective for me. I am still here and he is not. I am going to miss him terribly. Not going to take anything for granted again. Now I have to do some more research and wait for 2nd opinion dr. appt., gene testing and IUD removal. Trying to keep busy and positive! Thank you again ladies!

Denise-G

KCMC - so very sorry about your cousin's passing. YES, you can do this! You will make it through!

Sending my best!

msphil

hello sweetie we know what ur feeling been there hearing those words felt like a death sentence at first had my cry then decided to fight to be Positive i would get thru this i was diagnosed while preparing for Our 2nd marriage at 42 with no history of breast cancer in family But Praise God we got married after chemo n before rads. im now a 23yr this yr Survivor. Have Hope. msphil idc stage 2 0\3nodes Lmast chemo before n after surgery n 5yrs on tamoxifen.