Newly diagnosed and can't stop researching!

EastcoastTS · January 2018

Bec-Ky:

I'm glad you've come up with an initial plan -- is all falls into place. This is hardest when we're trying to figure out what to do!

You have this.

Sammy3 · January 2018

One step at a time Becky & it sounds like that is what you are doing! Hugs!

vampeyes · January 2018

Hi Becky,

I was diagnosed back in September. I went with lumpectomy and my margins came back positive. So like you I questioned which way to go, lumpectomy or mastectomy. After talking with lots of people and the doctor, I went with lumpectomy. My surgeon told me when they do the BRAC test if it comes back positive double mastectomy will be needed. At the time they would only do one side. We opted to wait and do both together if needed. Well here I am 5 months later, was scheduled to start Rads on Monday, didn't need Chemo and last night I found a lump in the opposite breast. So back to the worrying, the waiting for appointments to confirm or deny it's cancer. Right now without any results I want both breasts gone if it means not feeling like this again.

stexas · January 2018

Your case is very similar to mine. I am IDC Grade 2 , ER+, PR + HER2- 1 lump that was measured at 1.6cm on testing but turned out to be 1.1cm after surgery. This was the only cancer that showed up on imaging. They said my nodes looked clear.

I had no doubts I wanted a lumpectomy I just felt confident enough for that.

After I had the lumpectomy 3 weeks ago yesterday the pathology report came back Without clear margins they had DCIS in the margins and 1 of my 6 lymph nodes had micro cells IDC. I had DCIS present at Anterior, Superior and Inferior margins. All 3 margins were not clear which apparently is unusual.

I was BRCA Negative. Right now they are running the Oncotype DX on my tumor but that will not be back before my surgery on Monday.

Surgeon and Oncologist were pretty baffled by the findings but the new cancer found is only visible by a microscope. I met with them both last week and told them my fears for trying to get clear margins. Margins are only taken from 3 sides not the other 3 of mine so that means that sides not been touched at all plus clear margins have to be found on the side that has been done. If you go back in the 2nd and they still do not get clear margins to much breast tissue has been removed so that means automatic mastectomy 3rd time.

My gutt tells me this time to go for the single Mastectomy and I have no doubts its the right decision for me now but I wish I had done it to begin with and saved myself a second surgery 3 weeks later.

I wish you the best of luck with your decision.

ruthbru · January 2018

It is not uncommon to need to go back and get a clear margin. That is what I did, and it turned out fine.

momand2kids · January 2018

Becky

for what it is worth, I am almost 10 years out--- I had a lumpectomy. Then based on the fact that my oncotype was in the gray area, I had 4 short rounds of chemo and radiation. I have never regretted my choices. But I understand the anxiety- and we all feel it, no matter what our surgical and treatment choices. It does fade over time.... it just takes time. But I was 1-2 years in before I really did not think of cancer. Honestly, now, I literally never think about it. The best revenge is just having a great life- while in treatment then afterwards!!! Cancer took up about a year of my life--- sort of. I still worked,etc. but the treatments, appointments, waiting for my hair to grow back!!!...

Sounds like you have a plan-which is great-- helps you to feel in control. Lots of people have this once and never have it again. While there are never any guarantees, there is no reason why you cannot be one of them!!!

good luck

feliciascintillation · January 2018

Hi Bec-Ky~

After getting as much info. as I could after my diagnoses 1 & 2, I made the decisions which gave me the most peace. After the first diagnosis, a lumpectomy + radiation and after my second diagnosis and genetic testing of BRCA neg, a single mastectomy over a double. For me, less surgery was preferable.I wish you strength to make the decision which is best for you at this time.

Bec-Ky · January 2018

My MRI came back great, labs are fine and... No new suspicious areas. They did see a couple tiny spots on my liver but said they were benign, and nothing of concern. But to be safe I have to go back in 6 months and do an ultrasound.

I still thinking lumpectomy and radiation.

Only thing that scares me is that my husband has a friend who's wife was just diagnosed with bc in October.... Dcis smaller than 1cm. All tests were done... She opted for a double mastectomy. She had an option of keeping her nipples, but opted to get rid of them.

They came back with cancer in them. How is that?!?

Would that be something I should worry about, or was it just using the same surgical tools and not changing them Out?! Like jeez.... I want to not worry with stuff like that.

Kls77 · January 2018

Good Luck to you in whatever you decide. Lumpectomy vs mastectomy for early stage typically is just a personal preference. Research shows for Er+/pr+ HER2 - that overall prognosis and survival is the same with either choice. Beesie list was good food for thought. BRCA and other genetic testing should be considered. Your overall risk of recurrence won’t be known until post surgery(either way lump vs mx) with oncogene, mammoprint or other genomic testing. The other thing you should consider is lumpectomy with radiation still leaves a 1/20 chance of recurrence to either breast. My personal decision was bmx. Although more aggressive, I was 40 when diagnosed and long term survival with decreasing local recurrence was important to me. Distal recurrence risk is the same either way. My tumor size based on radiography was 2.1cm and I had 5 enlarged lymph nodes with greatest being larger than 2cm based on radiography. I also have very dense breast tissue. Per surgical pathology my tumor size was 1.4cm and 0/3 nodes were negative. So I’m stage 1 not 2. But mammogram, ultrasound nor pet commented or reported the additional DCIS tumor that was under my idc. Nor did it mention the 4cm benign tumor in my right breast. So personally i have no regrets with my decision

mbryant · January 2018

i am with u on being scared just came back from surgeon and i have stage 1 grade 1 IDC. my little friend is only 4-5mm big. he gave me a choice of having the lumpectomy plus internal radiation, or a pill that my medical oncologist will prescribe. i don't know about the other letters her2 or the estrogen receptor ones. having surg., on 1/30 should i go with radiation and /or take the pill what ever it will be. so confused. anybody out there have help.

Georgia1 · January 2018

Good plan, Bec-KY. Please feel free to check in on the "lumpectomy lounge" thread if you have any questions. But once I had my lumpectomy I felt so much calmer! "It" was out of my body and all I had to do was reduce my odds of having a recurrence with daily, painless, temporary radiation and then a pill. Best of luck to you.

gigibee · February 2018

I took the same route and thus far I am pleased with my decision. I didn't really have any down time, sore/bruised yes obviously, I was able to have prone radiation (which limited exposure to the breast tissue) also since it was my right breast I wasn't as worried about rad near heart...Also ask about oncotype testing which can be helpful based on the results of your node biopsy in determining if you would benefit at all from chemo and what your risk category is. They will use the actual tumor for the testing after surgery.

Newly diagnosed and can't stop researching!

Comments

Categories