Diagnosed IDC - Now what

LuvAll

Hello everyone,
I was recently diagnosed with IDC on 5/22/18 and am still awaiting the final pathology report to include information regarding breast markers ER/PR/HER2. Was told to wait 1-2 weeks and I'm trying my best to patiently wait after being told by others on the forum the wait is typical.

For others on this forum who have been diagnosed with IDC, i was hoping you could share some insight as to what to expect in the coming months. I have the following questions:

Question:
I've read that statistically over 57% of woman in my age group overwhelming fall in the ER+/PR+/HER2- group. Assuming I too would fall in this group, is the general course of action surgery (lumpectomy) followed by tamoxifen? It's my understanding that woman who are placed on hormone blockers initially are done so to reduce the tumor size, but given that my tumor is <3cm this wouldn't be my case right?

Question:
Assuming lumpectomy is in the cards for me how soon should i expect to be in the operating room. I just have this instinctual feeling that although these things (breast marker results) take some time, they are moving incredibly slow with no sense of urgency.

Question:
Would radiation than follow the lumpectomy surgery?
I know a medical oncologist would outline the specific course of treatment, but I've been reading about the different types of radiation (e.g. breast brachytherapy) and wanted to know if you had more insight as to which one would be the least debilitating or most promising. I'm afraid i'm already too old and frail to endure radiation. I already have other medical conditions: osteoporosis, hypertension, kidney cysts, digestive problems with my gallbladder removed, colitis and i'm so very afraid that radiation would just destroy whats left of me. I also went to our local cancer center and I couldn't believe my eyes with the number of people waiting and in line to get checked in for their radiation/chemo therapy. To be honest, and I hate to say it, it made me wonder whether every case truly necessitates radiation or whether it is a financial win for the center.

I'm so very sorry for the long questions. My appointment with a surgical oncologist is out 2 weeks, getting these answers and knowing what to expect puts me at ease. Thank you so very much if your reading this.

gb2115

It's my understanding that lumpectomy without subsequent radiation increases your chances of local recurrence by a lot. I don't think they're recommending it to make money. Lumpectomy and radiation just kind of go together. And having a mastectomy isn't a guarantee they won't recommend radiation---there are many factors at play there.

Sometimes ER/PR positive patients end up getting chemo as well. There are additional tissue tests they do (after surgery) to determine the usefulness of chemotherapy.

I am much younger than you, but I didn't find radiation to be systemically debilitating. It was uncomfortable, to be sure, but very much do-able (other than being a giant hassle and taking up all your time). It really shouldn't affect any of the other conditions you list, since it's very localized. For example, the radiation field will be nowhere near your kidneys or gallbladder. Radiation is not at all without it's side effects, but I've never heard of it exacerbating things like that.

Duffys_Mom

Hi LuvAll,

I am so sorry to hear that you have to go through this as well as what else is all going on with your health.

I was diagnosed on May 21 with IDC.

I thought I would let you know what has happened so far to me (as I know everyone is different and on different schedules). I totally empathize with you wondering what is next. And all the waiting.

Mammogram on March 24 then diagnostic mammograms and ultrasounds April 4. Core Needle Biopsy on April 11. I had an excisional biopsy on May 15th and received most of the pathology reports on June 1. I have a 1.4cm tumor ER/PR+ Her2- ; Grade 2; Not staged yet due to pending lymph node status).

It took 4 weeks from the core needle biopsy to the excisional biopsy. Then it took almost 2 weeks for the pathology results and the decision for further surgery (sentinel lymph node biopsy - which I undergo next week). I was really fortunate that the surgeon was able to remove the mass with clear margins during the excisional biopsy - my tumor was only 1.4 cm). So my excisional biopsy was my lumpectomy surgery.

I just met with the Radiology Oncologist and the Oncologist on Monday, June 11 and my Onconotype DX request was just sent to determine chemotherapy effectiveness (that will take another 2 weeks). My nurse navigator scheduled all my doctors visits on 1 day (talk about information overload - I'm glad I had my husband with me to take notes). I was told that I would have to heal for about 2-3 weeks after surgery before radiation begins.

I did have some very honest discussions with my Radiology Oncologist and my Oncologist. Both were very forthright with me. They said it is all up to me because I am the one who is going through this. GB211 (thank you GB211) stated a lot of what the Radiology Oncologist stated and I spoke with someone in the waiting room who was almost finished with her treatments and confirmed what was stated by Radiologist.

So it has been 3 months so far of getting all this information and still getting information into month 4. Probably looking at treatment at end of month 4 to beginning of month 5. Definitely a lot of waiting and gathering of information.

I was told by a nurse at the very beginning of all of this: "What you are experiencing is a journey not a race - take one thing at a time". I remind myself of these words when I start to stress over what's next and it has definitely helped me.

Wishing you all the best and I hope I hear back from you on how it is going.

Runrcrb

luvall,

Hopefully you’ve met with doctors, know your pathology and have a plan. I remember those first few weeks and also wondered why i was the only one in a hurry. In truth, breast cancer is rarely a medical emergency. I encourage you to take time and ensure that YOU are comfortable and at peace with your treatment plan.