Waiting on test results to make surgery decision

bjclaywell · June 2015

Hi all - just wanted to introduce myself - I'm 44 and was diagnosed in mid-May with IDC, Stage 1, Grade 1. Got in to see the surgeon immediately as my mom went through this about 7 years ago - but I'm waiting for the rest of my pathology report to come back as well as the genetic testing results before I make a decision. I have a rather heavy history of "gynecological" cancers on one side (they are unsure of exactly what kind they are as everyone was having total hysterectomies in the 60's and 70's in my family) and a few breast cancers on my Dad's side, and of course, my mom. I'm easily the youngest, however, by about 10-15 years. We also have tons of heart disease on my dad's side, so I'm worried about radiation.

Anyway - I'm waiting on the genetic results to make my decision, I think. It's an odd feeling, however, to be one day on one side of the fence, and the next day on the other side of the fence, feeling as though I'm unable to make any sort of logical decision without tears.

My BS thinks I should go with the bilateral mastectomy and reconstruction. I think I've been leaning that direction - but as soon as I feel like I've made up my mind and am just going to go forward, I get worried about the "what ifs." I did meet with the plastic surgeon and I'm absolutely floored at what they can do - such advancement even from when my mom went through hers.

Anyway - sorry for rambling. I wish none of us had to be here. I wish I didn't have to be here. But I do love all the support that I see on the Board. I wish I wasn't scared and I wish the answer was as easy as the Doctor saying "you have to do this..." I wish I didn't have to make a decision.

Bobbi Jo

123JustMe · June 2015

Hi Bobby Jo,
Sorry you are here but I guess so are a lot of us. I hope you receive the results of your genetic testing soon. I too am waiting for results. BS said that if the tests came back positive I was looking at a double mastectomy but after talking with MO and RO both felt lumpectomy and radiation is the way to go. Sometimes my brain just gets tired!

{{{hugs}}}

PatRN10 · June 2015

Hi Bobbi jo. How can you be staged yet if you haven't had surgery and lymph node check?

Susug · June 2015

bjclaywell, when I was diagnosed I immediatly thought since my twin sister had a double mastectomy when she was 45 I would need to do the same treatment.After getting all my results back I was told my CANCER was different than my sisters. I ended up with a lumpectomy and rads. Really think about it and talk to your Drs before making your final decisions. I will keep you in my thought

bjclaywell · June 2015

PatRN10 - It's what the doctor who did the biopsy told me due to the size and lack of apparent lymph node issues and the very slow growth rate? Is that wrong? {edited to add I've removed the staging - I thought because that's what I was told, that's where I was. I'm sorry.}

123JustMe - what does MO and RO mean? Sorry - new to the terminology. Thank you for the hugs - hugs back atcha!!! My brain gets tired too.

Susug - thank you for your insight, and for your thoughts! I need to keep in mind that my cancer is different than my moms, although she had a lumpectomy, radiation and chemo.

Sblue2255 · June 2015

bjclaywell- Hi, it's amazing how many of us their are. I was diagnosed in early June and based on biopsy at stage 2. I am planning a double mass. I am only 37, and don't want to worry about this again. My doc told me it was my choice and he is very supportive. I am hoping that I won't have to do any radiation or chemo, but for now it's a wait a see. This all feels very fast on one hand and in the other not quick enough.

Moderators · June 2015

Sblue2255-

We just wanted to take a moment to welcome you to our community here at BCO! We hope you find the support and encouragement you need as you prepare for your surgery, and long after.

We look forward to seeing you on the boards!

The Mods

bjclaywell · June 2015

Hi SBlue - sounds like we're on a similar track at the moment. I'm also leaning towards a bilateral mastectomy - hopefully no chemo or radiation either. But I guess we'll see.

I understand the feeling of too fast/not fast enough. I felt like I had a bunch of consultations really quickly, but then now I'm waiting and thinking a lot...I really want to get all the information and make a decision and move forward.

I got the amended pathology report back yesterday (although it was sent to my surgeon several weeks ago - I just saw it myself). I'm PR and ER receptor position (100% for both), but HER2 negative. I think that ultimately that is good news. I'm hopeful. I'm also waiting for the genetic testing, which was supposed to come back today, but the counselor called the lab and they said they needed one more week. Ugh.

Where are you at in all of your tests, etc.?

sydney2013 · June 2015

Bobbi Jo,

Hello, don't apologize for rambling, we understand. I was diagnosed with ILC in October 2013. Immediately decided on BMX, turns out it was a great decision. What we thought was one mass turned out to be cancer in every quadrant of that breast. I really struggled with what type of reconstruction to have, implants or DIEP. I think I just wanted someone to make the decision for me, but of course, it is a decision that you personally have to make. I decided on DIEP reconstruction. I think they look great, but it was a long process. I believed from my initial diagnosis a mastectomy was the choice for me, had I had a lumpectomy, I would have been back for the mastectomy shortly after. I am not trying to point you in any direction, I just want to reassure you that it is normal to not know what choice is right. Read and listen to others that have been there and then go with your gut. We are here for you.

bjclaywell · June 2015

Sydney2013 - thank you for your words of encouragement! I think I have made my decision - I'm supposed to get my genetic testing results back this week, but even if they come back all negative, my familial risk is higher due to several factors, so I think I know which direction I'm heading - clearly, it's a working through process, and it takes a bit of time.

I'm so glad your BMX worked out in the end for you. (btw - when I type BMX, I keep envisioning the stunt bikes of my youth) I am fascinated by the different ways women handle the decisions, etc. Some know immediately which direction they are taking on one thing, but struggle with other portions.

What a crazy/sad disease - with no single medically actionable plan that works for all.

Anyway - again, thank you! I really appreciated your kind words!

Trvler · June 2015

Just to let you know, there is a difference between ILC and IDC. IDC is a more defined, tumor like mass and ILC is more tree branch like. So it can be easier to surgically remove IDC, especially if it is small. Honestly, given the size, grade and type of cancer you have, I am quite surprised a BS would recommend a BMX. My BS on the other hand recommended a lumpectomy with rads and I sought more opinions for reasons I won't go into. He didn't even discuss the fact that it was ILC which bothered me. It was clear I made the right choice because they found more cancer in the same breast. But if I had a 1 cm, grade 1 with IDC, I would sure consider the lumpectomy unless you have reasons otherwise. I know you haven't gotten your genetic tests back yet.

bjclaywell · June 2015

Trvler - the reason my BS has suggested the BMX is because of my family history. My mom (both ILC and IDC), my aunt (ILC), my grandmother's sister (both, again), plus there are a ton of female gynecological cancers as well - the genetic counselor already told me I fall into a "familial" risk category (vs inherited or sporadic) even without the testing. I don't think it had anything to do specifically with my size and grade - if I had no high risk factors, I don't think a BMX would have even been discussed.

Of course, I am still going to wait on the genetic results, but as it was explained to me, even if the known gene issues come back negative for mutations, because I fall into the familial category (something is going on in my family, be it genes or whatever, but something we probably don't even know of yet), the initial discussion was for the BMX.

For what it is worth, my BS DID discuss a lumpectomy w/ radiation. He just didn't think that was ultimately the direction I needed to go, although he was clear that it is up to me.

Cheesequake · June 2015

Hi Bobbi Jo, welcome. Genetic testing REALLY does inform treatment decisions, so good for you for waiting. I wish I'd done it in the right order!

Do you know whether your genetic counselor ordered a full panel of gene tests or just the BRCA tests? I had a family history of several different types of cancer, so they did about 20 tests on me. I came back positive for Li Fraumeni Syndrome, which gives me a nearly 100% risk of several types of cancer and makes me more susceptible to new cancers from radiation than other people - which means even though I had a lumpectomy and was planning to do radiation, that is now not advised and a mastectomy is necessary.

I also should be doing MRIs instead of scans that use radiation, so a breast MRI is scheduled. MRI can often pick up things not seen on mammogram and ultrasound, so once I have the MRI done I'll know whether I want to do a single or double mastectomy (if the right side is indeed healthy, I want to keep it - I'm not going to do any preventative surgery, opting for more regular scanning instead.)

Trvler · June 2015

Ok, that's good. I get concerned that women are needlessly butchering their bodies. I know that right when you first find out your dx, it is scary and you want that sucker OUT. You obviously have to make the decision that is right for you. I wish you the best.

bjclaywell · June 2015

Hi Cheesequake - There were three tests offered to me, the BRCA and similar genes test, a "Gyno" panel, and a fuller panel. I got the GynPlus panel. http://www.ambrygen.com/tests/gynplus is the link to the site. There is only one gene they do NOT test for on the GynPlus panel that they do for the breast cancer one.

The TP53 gene is the one my counselor was most concerned about - if I read this right, that's the one you have, correct? Have you noted any other symptoms of Li Fraumeni Syndrome?

We did not go with the biggest panel because it had a number of genes that they can test for, but they can't really tell us what exactly a mutation on those genes does, and the counselor didn't want me worrying more about things we can't do anything about.

Waiting on test results to make surgery decision

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