I'm overwhelmed

dlj140

I need to know what to expect. I was just diagnosed 3 days ago. I'm getting my kids together tomorrow to tell them. I feel like everything is spiralling out of control, and I need to know what I can do to feel more in control of my life!

gb2115

Sorry for your bad news, but welcome to BCO! You will get through this!! So many of us have but didn't think it possible at the time. Do you know about your biopsy results--specifics on pathology? What is your next step? Do you have a nurse navigator or a surgeon office visit scheduled?

Snickersmom

Take a deep breath. Sounds like you really don't know anything yet. Do you have a surgeon, etc.? What were you actually told

dlj140

I had a "suspicious" mammogram in June. My PCP ordered a diagnostic mammo that I received a few days later. I work at the clinic where I was getting the test, and the radiologist advised me to do a followup in 6 months. Did that on 12/26. They took me from mammogram to ultrasound, and the radiologist came in to the u/s and told me I had a very concerning spot that needed biopsy. Got the biopsy on Jan 2, and results next day. Invasive ductal carcinoma. It's 9mm, strongly estrogen +, mildly progesterone +. The third marker results won't be in for about a week. Had appt with surgeon yesterday, but because our insurance is in process of changing at work, my treatments won't start until mid Feb. Don't know what stage I am. I am exhausted, scared, and overwhelmed. I'm terrified about the financial side of this because I'm divorced and barely make ends meet as it is...

Georgia1

So, so sorry. This initial stage is the worst. But it sounds like you have a good knowledge of testing so just a few thoughts.

This is less overwhelming if you take it one step at a time. From what you know now, you could choose lumpectomy followed by radiation. So consider if you have a good relationship with your surgeon, if she takes time to answer your questions, and if she is covered by your insurance. If not I would take the time to get a second opinion.

Sounds like your employer knows of your diagnosis. Is there someone who can explain your insurance to you? Everything should be covered except for your deductible and copays, but you will want to be careful about filing paperwork in the right order.

If the deductible is high, can you put the initial expenses on a credit card? Or do you have a credit union that might make a small loan? A phone call or two might make you feel more in control.

Hang in there.

Spookiesmom

For expenses, the American Cancer Society can help you. They found help for me to get a bill paid in full. Or child care, or transportation.

mustlovepoodles

I dont know how old your children are, but you might be surprised at how well they take the news. Children, even adult children, will take their cues from you. Time to "act as if."

This how the "act as if" principle works: You act as if you have this under contol and sooner or later you will. In the meantime your children will perceive that you ARE in control and will feel reassured. Is this easy? No. No, it is not. But you can do it.

Don't worry too much about staging right now. They won't know that until they get the tumor out. But the vast majority are diagnosed early.

Best of luck to you.

gb2115

9 mm is on the smaller size, that's great news! What is the surgeon having you do next....wait for the final pathology report (looks like the her2 part is pending) and then go from there? Or is surgery being planned for February?

You won't know final staging until they biopsy your lymph nodes during surgery, so don't sweat that part.

ceanna

dlj, sorry for your diagnosis, but here you will find comfort and information. The hardest part is the unknowns at this point, and for you the insurance unknowns add to the situation. Rest assured, once a treatment plan, and insurance, is in place you will feel differently. It's one day/step at a time. If you have access, a nurse navigator can be a great help in answering questions and finding out more details. Start writing down your questions and the answers you get. The shock of the diagnosis can make us a little uncertain about what answers we get, so writing them down seems to help.

Personally, I told very few people and, not knowing the age of your children, I would be hesitant to "talk" with them until you have more details. If you're feeling well at this point and you don't know the treatment plan, perhaps you may want to wait to talk with them about your diagnosis until you have some of those things in place, especially if they're younger, or if you don't need an adult age child to help you navigate the unknowns.

All the best to you and let us know what other questions or help you need.

dlj140

My surgeon said waiting a month for the insurance to switch is ok. He plans on lumpectomy, testing 3 lymph nodes, and radiation. Chemo if the Her2 is + or if lymph nodes are involved. Hormone blocking therapy is also being planned. Luckily, I'm postmenopausal.

Georgia1

DJ, that sounds like a good plan. Depending on the size, lymph node involvement etc. you may even be able to do a short course of radiation, which would be 3-4 weeks instead of 5-7. Best of luck to you. You can beat this.

dlj140

My kids are 35, 31, and 23. I have them coming for a Sunday dinner, and I'm trying to get as much info as I can beforehand, because I know they will have a hundred questions. I'm a control freak, so I had to give myself time after the dx to get used to the idea first.

The clinic I work for was just bought by a large hospital. I am using surgeon and oncology from my clinic, but have to wait for the insurance change from United Healthcare to Blue Cross, otherwise I will have to meet 2 separate deductibles and out of pocket expenses twice...

mustlovepoodles

I did the same way. My kids were 23 & 30 at the time. We had them come over for cookies and desserts. At the time I didn't have a lot of info. Just that it was a small tumor, garden variety ER+/PR+, and I'd be having the lump taken out. I presented a strong face and they bought it. I'm sure they were upset, but I think it helped them stay strong seeing that I seemed to have the situation in hand.

You don't have to have a complete plan right now. In fact, the plan may change mid-stream as mine did when we discovered that my tumor was actually PR-, a more aggressive tumor. And the plan changed again when we discovered two rare gene mutations that caused it all. But i made sure my kids felt reassured all along the way that I was gonna fight as hard as I could with every weapon I had.

Best of luck to you. I hope your meeting goes well.

gb2115

It does sound like your next steps are solid. Hope your time with your kids goes well today!!

ml143333

I am so sorry you had to join us. Telling your children, not matter their age is hard. When my husband and I told our children, they were 11, 12 and 19. We told them the truth about my diagnosis and told them what my treatments would be (surgery and chemo). We told them that my prognosis was very good and that we would all go through this together. We encouraged them to cry if they wanted to, laugh, ask questions, and it was okay to be angry. We told them no question was off limits and they could talk with us anytime. It was difficult, but they knew something was going on. As much as we tried to act normal while waiting for results, it didn't work. The kids thought we were getting a divorce until we told them what was going on.

Good luck in talking with your children.

beach2beach

I also waited until I knew where I was headed with it all. Some may find it horrible, but I did not tell them until day before surgery. It all happened so quick from time of dx to getting all the factors in(as much as was available until after surgery) and then I was scheduled. All within a week time. (my breast surgeon is head of breast oncology). Mine are 22,20, and 16. My daughter took it the hardest she is the middle one. The boys didnt say anything. I just told them this is what I'm dealing with, this is what I am doing and I plan to be here for a long time. Need you to stay strong and positive and keep doing what you are doing. Think seeing me after I got into my room at night after surgery, i was walking the floor with iv pole etc, it helped them to see that I was ok.

Not knowing what to expect is hard for them as us. Reassurance and then more reassurance.

Snickersmom

Sorry that you have joined us but you will get so much support here. 9mm is pretty small. Mine was 5mm, Stage 1A. I had a BMX because of the placement of two other little monsters (that turned out to be benign) and am on Arimidex. I am 70 so also post-menopausal.

I live in Florida so I called each of my 3 daughters (ages 46, 43, and 42) and my sister a few days after my diagnosis. My daughters all live in New England and my sister lives in Arizona. I just felt like I wanted them to know everything right from the beginning. I tried to stay upbeat about it and they did, too. My husband and I kept them posted on everything. I was diagnosed just before Easter last year, and we went north to spend the holiday with the girls and their families. We told them my surgery date, etc. I really wanted them to be informed. No surprises. While we were there, I also sat down with my 4 granddaughters (ages 12, 12, 11, and 10) and told them about breast cancer and my surgery. I told them that I wanted them to ask any questions at all instead of worrying and wondering. They did ask a few questions and I answered them honestly. A few months ago when we were visiting them all for Thanksgiving, one of the 12-year olds told me that she was glad I talked to them and told them everything because she has a friend whose grandmother has just told her family but not the grandchildren. This friend apparently overheard her mom and grandmother talking about it and was so upset because nobody had told her.

I felt that my family all had a right to know what was going on. If the tables were turned and one of my daughters was diagnosed with something, I would want to know. If nothing else, it's been wonderful support for me.

We live in a wonderful neighborhood and one of my neighbor emailed all 3 of my daughters and my sister (she had never met them) to let them know that all of our neighbors and friends would take care of us and that they shouldn't worry about us. My golf group provided home-cooked dinners for us for the entire month following my surgery. I have never been treated so well and I thank God for all of these wonderful people.

Each of us has to make what we feel is the right decision for ourselves. For me, the support I received - and still receive - from family, friends, and neighbors has been what has kept me going. I could never have kept this from them. But that's the way I am and I understand that we are all different and have our own personal feelings.