Just diagnosed Waiting for surgery/treatment

BeccaFish

I was just diagnosed in IDC/DCIS (one site some of the mass is in situ, the rest not. According to pathology report/mammogram/ultrasound, the tumor is 7.7 mm (< 1 centimeter). The pathology report says that it is Estrogen Receptive, Progesterone Receptiveness and HER2+. It says there is no evidence of lymphovascular invasion by D2-40 staining. The radiologist who did the ultrasound said the lymph nodes looked clean.

I'm worried because they graded it as a grade 3 tumor. The date of the first mammogram was April 8. The soonest we could even get an appointment with a surgeon for a consult at Fox Chase is this coming Monday. I am terrified that because it is aggressive, it is going to grow and invade my lymph nodes and my entire body in that time. I just want this taken care and out of me now. It's just terrifying. I'm only 39.

BeccaFish

The official diagnosis from the biopsy came last Tuesday, April 18.

LisaAlissa

Hi Becca,

So sorry to hear your news.

Take a deep breath. You're about to be bombarded with information and decisions to be made. Is the consultation on Monday with the surgeon the first time you've had a conversation with a doc about your pathology results?

I remember being told that the cancer could have been growing for up to 10 years before there was enough of it to be detected. Ask your docs, but you have enough time to consider your choices...even see a second opinion team if you aren't happy with the docs you meet.

Yes, Grade 3 is aggressive/fast growing, but that can make it particularly susceptible to chemo (a good thing!).

While you have some DCIS which they will want to remove surgically, the focus of other treatments will be on the IDC--the treatments directed at the IDC will take care of the DCIS at the same time. And that will be the diagnosis you'll want to focus on as you spend time here.

You'll want to start a filing system/notebook to keep copies of all of the various reports (visit reports, procedure reports, lab reports, pathology reports) as well as bills and appointments. Occasionally you'll be seeing a doc who needs something done by someone else (labs?), you'll have been told that they have been sent, but when you get there, they don't have it. If you've got it, you won't have to reschedule.

Some questions you may want to ask your doc. Should you get a referral to a genetic counselor? Every insurance company has different criteria, but your age alone may be sufficient to get counselling (and testing, if you and the counselor decide it is appropriate) covered by your insurance.

If you are concerned about future fertility, be sure to inquire about that too. And perhaps a pre-surgery consultation with a medical oncologist.

Finally, you'll want another set of ears with you on Monday. It's very hard to hear "your cancer," and to take in all they will tell you. Many docs will let you record the consultation so that you can re-listen to it again. So you may want to consider recording with your phone.

Hang in there! This is doable. Just one step at a time.

LisaAlissa

gb2115

I'm young too---38. It's hard. It doesn't seem like it now, but somehow you get through it all. I had similar worries (about the delay between biopsy and treatment and concerns about spread) and felt much better after meeting with the surgeon. The radiologist who gave me my diagnosis warned me that it's very "hurry up and wait."

You might want to consider reaching out to your center to see if they have a nurse navigator program. The hospital I was diagnosed at had nurse navigators, and I spent quite a bit of time talking with one about things like this. Like when the surgeon said I had up to a 6 week window between diagnosis and surgery, I called her up to go over that and see if that was correct. I was also worried that I wasn't seeing an oncologist for almost 3 weeks after surgery, and she was able to calm me down and explain that the seemingly long wait times were well within normal standard of care. It all ended up being ok. And even though I ended up having one positive lymph node (surprise surprise), it still ended up being ok. I thought that would be the death of me, and it wasn't. Anyway, I found the nurse navigator to be extremely soothing during an emotionally devastating time. It's their job to help you through things like this. Just a thought.

msphil

hey honey once treatment is in place things get better take it from a 23yr SURVIVOR Praise God Hope n Positive thinking support system got me thru my Faith. msphil idc stage2 Lmast chemo n roads n 5yrs on tamoxifen. God Bless Us All.