35 Yrs. Old & Diagnosed with IDC

I was dx 8/3 with an 8mm idc. Hormone positive and her2 negative . MRI confirmed the single nodule. I had surgery 9/27 ( Lx) to remove node and sentinel nodes (2) I’m waiting on path results at this time. Oncotype will be ordered at that time base on results . Prior to surgery chemo was not on the table but oath results and oncotyoe results will determine . I have appt with radiation onco Friday to discuss starting 3x week’s of radiation tx. Good luck

Sharon

Hi - I’m also new to all this and fairly young (43) to be going through all this (so I can understand how you feel). I’m still making some decisions of my own and like you researching a lot. I CAN share that I chose (and did) the lumpectomy over the mastectomy. Here were my reasons why:

- I really cared about conserving my natural self (and breast!) if at all possible.

- Lumpectomy was an option for me. Tumor was localized to one area.

- Masectomy removes the whole breast and in most cases the nipple too. I prefer to conserve the nipple if possible (and did!).

- Lumpectomy is a simpler post-op recovery. Masectomy requires overnight stays, a drain attached to your breast(s) after that you have to regularly remove fluid from, longer time to recover, greater potential side effects impacting your arm and chest muscles etc. Some women breeze through it, but if I didn’t HAVE to do that I didn’t want to.

- Just personally I was all about preserving my natural self as much as possible. If I needed reconstruction I would do it, but lumpectomy provides hope that I may not need it (surgeon’s office showed me some very encouraging pictures of other women who did a lumpectomy and before / after looked the same, no reconstruction!). The thing with reconstruction is it needs to be maintained so count on a surgery every 10 years or so to maintain it, and I chose to avoid that if I could.

- Survival rates are the same on both options, so it’s just a matter of personal preference.

- I’m OK with radiation treatments needed after a lumpectomy. Will give me an excuse to work from home during the time it’s needed!

That said, before I found out I could do a lumpectomy and was mentally preparing myself for a masectomy and reconstruction, I did walk up to my husband and teased, “So what do you want? This is your one time to choose!” (re: my breasts)

I had a smooth lumpectomy surgery just over a week ago now. I checked in at 7am and by 2pm my husband was driving me home, it’s outpatient (much nicer for me, I prefer my cozy bedroom at home to a hospital bed). Only took a little ibuprofen the day of and day after my surgery - they prescribe a whole lot more painkillers and narco for you just in case and I didn’t need any of it. The first thing I did was look at my breast when I groggily woke up from surgery and was relieved to see it still there and still full! Have a scar that’s healing - other than that, happy to say that I will not need reconstruction, the breast is fine.

I’ve spoken with women who have done both and ultimately people make their decisions for their own reasons (some who do the mastectomy like to have the peace of mind that the cancer is out and don’t want radiation, others like the chance for reconstruction) - everyone I’ve connected with has been satisfied with their decision, whether a lumpectomy or masectomy, including me. I wish you the best in making the right choice for you

@bookworm14 - glad you are doing well and the surgery went smoothly and you are on the road to recovery.

One piece of advice that really helped me determine the right treatment path (and feel good about it) was to do the oncotype DX test and get your oncotype score. I knew to ask for it when I found other forums here with women who had similar cancers and also in a few lymph nodes and half of them had chemo and the other half didn’t. Whether they did or not was all based on their oncotype score - it’s a test they do on the tumor itself so you don’t need to do anything but ask for it.

If you have a higher oncotype score (above 26) they usually recommend chemo as it’s been shown to reduce the risk of recurrence. If you’re oncotype is lower (18 or below) it actually has been shown that the hormone therapy is MORE effective than the chemo so they would not recommend chemo. If you’re intermediate (between 19-25) it’s up to you based on your own risk/benefit analysis. There are other women who have had oncotype scores of 24 or 26 that refused chemo.

For me, my bone and CT scans came back clear (whew!) and my oncotype score is 21 which showed that I would have the exact same risk of recurrence whether I do chemo or not. So I am going to do the hormone therapy, no chemo, since in my case the chemo wouldn’t help and the oncologist said he would not introduce that extra toxicity of chemo if the results would be the same as hormone therapy alone. So I start radiation Monday.

Good luck with your next steps and decisions! Hope this is helpful information to pass on.

hi bookworm

Just wanted to pop in and give you some encouragement. It was June of my 42 year when I was 1st dx'd. My daughter was born when I was your age.

I had exactly the same dx as you except had loads of dcis with some spill in other breast so no choice but double mx and double axilla clearance.

My surgeon said you really only get one good shot at it so hit it with everything you've got.

You have done that.

I had chemo and no rads due to double mast. Which might happen to you...

I had one node involved with extra capsular spill which I think you also might have.

I wish you a smooth journey through your next stage...It is not easy but it can also teach us a lot about ourselves (I have come to believe this) faith is an awesome and helpful friend to help you through.

Macrometastasis just means the cancer in the lymph node was bigger than 2mm, if I remember correctly. It's just a more technical way of saying there was a positive lymph node. There is also micrometastasis, which is smaller than the macrometastasis cutoff size. I had two positive nodes, one macro and one micro, but the micro one was close to being macro anyway, so... I figure I had two positive nodes.

As for the internal mammary nodes, my understanding is that although cancer can spread there, that is not generally the first place it goes. Often those nodes are positive when there is much more significant regional spread.

Hold on to your faith - this can be a hard road to walk sometimes, but you are never alone. Hugs.

hi bookworm,

I also had the macro note and I do believe it refers to your positive node and the size they found there ( I think whether it was more or less than one cm).

Re kids: I told my then 7.5yo and 4yo that I had something growing inside me that wasn’t supposed to be there and the doctors were going to take it out. Then they were going to give me special medicine to make sure it never comes back, but that is a funny medicine that might make me tired, nauseous, and it will make my hair fall out. I honestly can’t remember if I used the c-word.

My oldest is very sensitive and perceptive. She’s struggled a bit this past year worrying about me. My middle one has also been worried but is more easily distracted. It has helped to have a big support network of friends and family who will listen to their concerns but also play and talk, whatever they need.

Wishing you all the best. Please let me know if I can help as you take your next steps.

bookworm, I am 48 and have a 17 year old daughter who is away in college, she doesn’t have a clue what I’ve been going through. I don’t know how tell her because I don’t want her to worry specially when she’s far away and by herself.

Hi Bookworm,

I’m new to all of this, so your notes at the end of your post have me confused. We’re you dx with BC twice, and one time after mastectomy? I’m trying to learn and understand. It’s all confusing right now