ILC Grade 2

Hello everyone.   This is my first time joining any kind of online forum (except Facebook).   

So, just needing some reassurance that I've made the best decision.  I don't think there is a right or wrong decision, just  what is best decision for me. But did I make the best decision?

My diagnosis came via telephone on 30Sep14 after having annual mammogram, followup mammogram, ultrasound, ultrasound guided biopsy and finally MRI.  (initial mammogram 19Sep14).  Cancer Nurse Coordinator was prepared for my shock and disbelief. I told her to just talk and I would listen, try to comprehend and write a few notes for myself. I needed to be able to share my diagnosis with 2 of my sisters before telling the rest of my family. They were surprised too.  

Had a meeting with the geneticist on 3Oct. Took family history, discussed BRCA1/BRCA2 and panel tests.  Took blood for BRCA tests as well as to be ready for surgery.  All blood work came back normal. I am in good health.  (with the exception of a neuroma on my left foot and a Bakers cyst behind my left knee and now the cancer diagnosis)

I should tell you I am 56, post menopausal 1 yr and took lowest dose of Pempro for hot flashes during this last year. Cancer seems to be running in the family. Mom had cancer 2 X with double mastectomy and reconstruction the 2nd time (this between her 60s-70s). Younger sister (mid 40's at the time) had a ductal carcinoma and reconstruction about 7 years ago. Dad had early stage pancreatic cancer and is 5 years cancer free this April. He is now 80. Whipple surgery saved him.  I do have a family of survivors.

Oct 15, 2 of my sisters (neither having any cancer)  drove from OR to be with me in Seattle during my 4 hr meetings with the Radiologist, Surgeon and Oncologist. I'm so glad they joined me. So much information. All the Dr's and nurses were great. They fielded questions from all 3 of us.  In addition, the meetings were recorded and sent to me within 2 days on a cd-rom.  I've listened to the cd's numerous times, talked with friends and family, even shared the recordings with a a few so they would be better informed and could help be make a decision if/when I asked, which I did and which I got great feedback. Not that I agreed with them all, but it certainly helped. 

So- here is my diagnosis and recommendations-

invasive lobular carcinoma, grade 2, Nottingham 6/9, largest 7.5 mm, no DCIS, calcifications present in carcinoma, ALH and ducts, no lymphatic invasion

Right breast 11:00 ER + PR + HER2 -(1+)

Here is the recommendations: 

RECOMMENDATIONS

Breast Surgery Options: Right partial mastectomy

Oncoplastic Options: Left mastopexy , Right breast radial ellipse, Right racquet mammoplasty

Axillary Nodal Staging Options: Right sentinel lymph node biopsy

Localization Options: Right breast pre and intraoperative ultrasound

Radiation Therapy Eligibility: Right whole breast radiation therapy, Right breast IORT

Patient may be a candidate for a clinical trial : VMMC IORT Protocol

I went round and round wanting IORT. What a great thing that is ,eh? Being able to have radiation at time of surgery and followed by meds and close/frequent follow-ups. I was really leaning this way. However, my Radiologist said research has not shown the best results with lobular cancer. She gave me an example that of 5 women in their study, with similar characteristics to mine, including age, 4 of them did not have clear margins and had to still have full breast radiation. One minute I said I don't care, what have I got to lose if I have IORT?  If the margins were clean, then I'm done with radiation.  How great would that be?   I had the Dr's send for insurance approval. They say could take 10-14 business days.   So over the weekend I pondered and read up about IORT on the internet. I found some YouTube videos showing the procedure. And in the end, much of the data was the same. Studies excluded Lobular. If they included it, they didn't have enough people or data with Lobular to show positive results.  My Surgeon seemed to be more positive about it and I felt like she was telling me I should do it.  Although I know she was not telling me, do it. She is not allowed to sway me one way or another.  I had asked the Radiologist last week if she could put me in contact with someone  who had IORT so I could speak to them. She did. A woman who was one of the 4. It was helpful talking to her but in some ways I was more unsure now of what I wanted to do. 

I also was going round and round about having the Oncoplastic surgery too.  Do i want symmetry?, of course.  But why would I want to cut into my left breast when I have no cancer there?  I do not like hospitals, needles, blood. I have low pain tolerance too. With this type of reconstruction they tell you it's possible to have temporary, partial or complete numbness in/around the nipples and/or areola.  This didn't seem like an option I wanted to try. However, getting a bit of a lift (DDD and wire bras all my life) and symmetry would be a great thing.   So.. round and round we go in my head. 

Then I met with my Surgeon again this week (21Oct). She was so great. It was a good to talk to her again. According the Cancer Care Coordinator it is not unusual for patients to meet with our different Dr's many, many times before making a decision.  That made me feel normal.  .  I actually made up my mind at the appt that I would go with the Lumpectomy and daily radiation and I would forego any reconstruction at the moment.  I decided I don't want any dormant microscopic cells living in the breast, so full breast radiation is the way I'm going.  I asked to see some photos of before and after and also decided no reconstruction. Perhaps at a later time.  Boy did it feel good to have that weight off my shoulders. So Surgery set for 30Oct. . I wanted to get this done sooner rather than later. 

Then today 24Oct,  I get a text from the women I spoke to that had IORT followed by full breast radiation. She was checking in with me to see how I was doing and if any decisions made.  Many texts and I had  many more questions than before.

I made another decision this afternoon.  I am going to do the Oncoplastic surgery. Better to do it now and not have to go under the knife again and have symmetry. Also, there is the $$ factor. With all this surgery I will have met my medical insurance deductible, co-insurance co-pays 80/20 and my out of pocket maximum for the calendar year ($4000).  If I were to wait on the reconstruction, it would be a new calendar year and I'd have to meet the $$  all over again.   

So I called the Cancer Care coordinator, asked if Dr would revise the consent form with agreed upon procedure to include Oncoplastic surgery and can we  still do it on Oct 30th.  AND.. yes, yes, and yes.  So I feel good about my decisions.  

Am I really crazy or what??   Have I really made the best decision for myself?   God, I hope so.  What do you think? 

If you get through reading my step-step of how I got here, let me know what you think please.  

Also, if you have any suggestions on front closure bras for post surgery, I d like to know. I need to get a few. 

Have you had a lumpectomy? how long was your recovery?  How many weeks did you take off before returning to work? 

Any and all suggestions and things I may not have thought about are appreciated.  If you don;t want to post, you can send an email or private message me.  

Best of Luck to everyone going or having gone thru this. Isn't it ironic that Oct is Breast Cancer awareness month and I found out in Oct?   

Julie