Just found out and lost!

Anonymous

Just found out and lost!

ashleyjo26

hi I'm 36 years old have 4 kids 18, 8, 8, and 3 and just found out from my biopsy that I have invasive ductal cancer! I am at lost as to what to do they thought it was mastitis so had me come do followup and 2 days after my biopsy I find out this the only thing told to me was Name of cancer and that it was estrogen negative. Any advice on what to do next or what the upcoming weeks will look like thank you so much.

ceanna

ashleyjo, I'm sorry you find yourself here, but hopefully we can share with you and ease some of your concerns. You are now living the hardest part. You are informed about the cancer but not the next steps. It will be easier as you find out more and get a treatment plan in place. Your mind is whirling now with concerns about you and your family. You may find it helpful to write down all your questions and concerns as they pop to mind so you don't worry about forgetting the questions during your next appointment. If you are going to a breast center, maybe you will be assigned a nurse navigator--a very helpful person you will be able to meet with and ask questions of. At this point, try not to Google--the wide range of misinformation you might encounter in the results are not worth the worry. As you get more information about your diagnosis, come back here and ask you questions or read through other pertaining threads. We will help you when we can. Virtual hugs to you.

Salamandra

Hi ashleyjo,

I'm sorry you got this diagnosis, and I agree with ceanna that these first days are so so hard.

For what it's worth, I think it's normal to feel completely freaked out and adrift. For me (and many others), I first felt like I could exhale after my first appointment with my surgical oncologist. Meeting with a specialist who had looked at MY scans and had all the expertise and hearing in her voice that she's seen all this before, hearing her explain my situation, and hearing her confidentce in recommending a treatment plan for me and in giving me hope (not certainty, but hope), well, that was huge. Even after that, there were many more things to wait for and it was often not easy. But nothing ever came close to being as bad as those weeks between my biopsy and my first appointment.

Sadly, in the mean time, there isn't a whole lot to be done. In practical terms, I think the only thing to do is to make sure you get copies of all your scans to whatever treatment center/centers you want to be treated at or think you might want a second opinion from. Possibly doing some research on your insurance coverage/support for cancer. Both of these are things that people will be able to help you with, and probably be very glad to feel useful on. I think one of the most helpful things you can start setting up for yourself now is a treatment/medical team that you feel confident in. If you don't already have mental health support (therapist/psychiatrist), I whole heartedly recommend trying to set that up too. I found that the whole breast cancer was just as, if not more, arduous emotionally as it was physically. It really messes with your head. I think this can be especially helpful for women with children living at home, as navigating talking about it with children is not always easy.

Do you have a good cancer treatment center near you that takes your insurance? Contact their intake and get an appointment!

Another thing to do might be to contact a social worker who can support you through this. If your insurance doesn't have it built in, or even if they do... I ended up calling Sharsharet. They hooked me up with a social worker local to my region who understood both the insurance/financial landscape and the psychology of breast cancer. She was a great support both practically and emotionally. If you are feeling overwhelmed with either the emotions or logistics of all of this, contact them! They are a Jewish organization but they support everybody. (There are probably other similar services, I just don't know to recommend them).

In terms of the coming weeks...

Since you are ER negative, there is a greater chance they will send you first to a medical oncologist instead of a surgical oncologist. But either way, those people are the specialists and the experts and will get your full diagnosis and treatment rolling. You might have additional screening before starting treatment - many of us got MRIs to see if there were areas of concern not previously picked up, or the other breast. With that information, your medical team will make a recommendation of whether to start with surgery or chemo, which surgery, etc. Then you can if you want take some time to get a second opinion, or a plastic surgery consult, etc, before you actually start treatment.

I would say stay off of Dr. Google. You don't have enough info to use internet research usefully at this point. If you feel like you need to talk things through with someone, a social worker, these boards, or a trusted friend, is a much better place to start. If you just want to educate yourself about breast cancer though, or look up what things on your medical reports mean, I would say stick to this site and the super excellent Canadian site Moose and Doc.

Finally, what I wish my primary care doc HAD told me when I was first diagnosed, is that the vast vast majority of breast cancers are early stage and treatable with curative intent, and treated breast cancer diagnoses that impact length of life are the exception rather than the rule. Chances are that you will go through months of treatment feeling like your life has been turned upside down, but that when those months are over (fewer or more of them depending on the details of your diagnosis), you will basically get back to your regularly scheduled life.

Hang in there, good luck, and keep us posted!

DutchieGirl

I concur with Salamandra and Ceanna and really can’t add too much more. Because you’re hormone negative, your cancer is different than the majority of breast cancer diagnoses and, while your chemotherapy will probably be the same, your after-chemo treatment will most likely be different. I am also hormone negative and Her2 positive so I received nothing beyond herceptin. I’m 2 1/2 years out and doing well. Take it one day at a time. Once you have a plan in place, things will get better. Good luck to you!

ashleyjo26

thank you all for kind words! I am just waiting for all these appointments! I got my pathology report and it is triple negative. So now I just wait!