31 year old recently diagnosed INV Ductal Carcinoma

Reese13

Hello Everyone,

I was just diagnosed last Friday. My mass is 2.8 cm and it is a grade 2 and my lymph node that feeds into the breast came back negative so I am really hoping that means this hasn't spread. I also have Crohns and I have been battling that for 12 years. I am scared and just in absolute shock. I am thinking about just doing a double mastectomy and just being done with it. If no lymph nodes are involved will I still need to do chemo etc? Also, I have not been officially staged yet but based on size and how the lymph nodes in my armpit were not involved in thinking I'm going to be a stage 2a most likely. But I really have no idea since I'm not a doctor. I'm just looking for advice and to hear other women's stories.

Thank you

Moderators

Dear Reese, Welcome to the community. We are sorry for your diagnosis and we hear your fear and shock. We are sorry you haven't received any responses today. You might also try to post on the Just Diagnosed Forum. Here is a link to information on our site about staging and treatment options. Keep us posted and stay connected here. The Mods

Kat1984

hi there, I'm sorry you have to be here but you've found a wealth of knowledge at BCO. Im very much a lurker but had to respond to your post as your cancer sounds identical to mine. I was diagnosed at 30 last year and was stage 2a with no lymph nodes. Have you found out your hormone status? That can very much effect whether chemo is recommended. I was what's known as triple negative (er-, pr-, her2-) so for me chemo was standard. I had a single mastectomy, no recon yet and 16 rounds of chemo and no radiation. Everyone is different and we all have differing treatment plans dependant on many things like stage, tumour grade, lymph node involvement, tumour size etc. Some times chemo is used to try and shrink the tumour if it is large or close to your chest wall, then some women opt for a lumpectomy also. My experience with chemo was not too bad, although losing my hair really got to me. I'm having recon next month and having my remaining breast removed and reconstructed at the same time. Please feel free to ask any questions

LM070917

Hey Reese, sorry to hear about your DX. I think if there is no trace of cancer in the nodes, then it depends on the grade and size as to whether or not chemo is warranted. I was DX at 34 years old and in one week I'll be a year out. It's hard esp at a young age but once you know what you're dealing with and have a treatment plan in place you'll be able to attack it head on. More and more women are surviving. Good luck

Anonymous

Hi Reese13- even though I feel like I'm young, I guess I'm not lol (49). I was diagnosed similar, but my "mass" was larger. Like Kat1984 said everyone is different.... my 'team' decided for me- chemo first, then surgery. So I've had 1 round and I'm waiting for my hair to fallout. There's sometimes too much info here haha- but there's some absolute GREAT support....I found a thread for folks starting chemo when I did, and it's been so helpful and supportive. My best to you- this just sucks!

Reese13

Hello Kat1984,

I don't know anything about my hormones yet. I pretty much just know what the radiologist told me. I go in and see the oncologist and surgeon on the 12th so I should know more then. It does sound like our cancer is similar. I just wish I knew more. I think the unknown is the hardest part. Right now I just feel numb and I don't know what to think. I have to go back to work tomorrow so that is going to be hard. Are you cancer free now? How long was your journey? Do you have any advice? Thank you for sharing your story with me.

Kat1984

hi reese13,

I think the waiting and the Unknown is the worst part. I, like you, got the initial diagnosis but it wasn't until a week or 2 later that I got more details, like hormone status. That's probably the biggest part in determining your treatment plan. I am cancer free now! Its been a tumultuous year, but I did it. I was diagnosed almost a year ago, I had some eggs frozen first, do you have children? Fertility preservation may be something to talk to your doctors about. Then I had 4 round of AC chemo, once every 3 weeks. I can't say it was pleasant but not as bad as I anticipated. I had a mastectomy and lymph node clearance in Feb then did 12 weekly rounds of taxol which wasn't bad at all. I'm now going to have a 2nd mastectomy and double recon. Have you told your work? My work was very flexible and I was able to work part time for the year. My biggest advice is to listen to your body and take time for yourself. Take someone to all your appointments as you'll have so much information thrown at you and a 2nd pair of ears helps. Also ask your doctor for something to help you sleep. Please ask me anything you'd like x

moredata

Hi Reese,

I was diagnosed back in March and have lurked a lot reading these forums since. The time right after diagnosis was so fast-paced for me, and, in a lot of ways, I feel like I'm just now starting to really think and process what all I've been through this year. Sept 1st was my 35th birthday, and seeing your post struck the chord that got me to finally make an account and post.

So many of the decisions seemed to wait on one more piece of data or one more test, and as the data poured in, the decisions seemed to move faster and faster. I really believe everybody has to accumulate their own data, take stock of their own feelings about their body, and work with their own doctors to find the best path through, but I will encourage you to try to collect as much data as you can and, if there is limited or no lymph node involvement, OncoType is awesome data to have for planning what to do after surgery.

My surgeon offered lumpectomy or mastectomy, and I took the "Nuke it from orbit" approach and went with the double mastectomy. I had very dense breast tissue and received lots of warnings about the difficulty of monitoring dense breasts; I felt like I had too many years ahead of me to want to think about new lumps; I wanted symmetry. I'm a very active person (or I was and intend to be again) and wanted to minimize surgeries and recovery periods, so I had a single surgery: two breasts gone, two implants in, no revision surgery. I confused my plastic surgeon by choosing an implant slightly smaller and lower profile than my natural breasts, and I'm looking forward to getting back to rock climbing and kayaking/white water rafting with my slightly reduced breasts (roughly half a cup size smaller). There are limits to the size of implant that can be done in a one-step mastectomy/reconstruction, and I feel lucky I could get as close to my old profile as I wanted to be with just one surgery. My plastic surgeon also wanted to try to convince me to spare my nipples, but the tumor was way too close, my MO was not in favor of nipple-sparing mastectomy, and I was quite firm about how much skin I absolutely wanted to be gone in order to help ensure good margins. No nipples was a little odd to look at at first, but I'm looking forward to getting a tattoo across my chest next year when all the scarring has settled: I decided that having a completely new look would be easier for me than having a not-quite-the-same look.

For me, given the tumor size and no node involvement, whether or not to do chemo was a big question. Finally, because my OncoType score indicated intermediate risk, my MO advocated Cytoxan and Taxotere but no Adriamycin, and I took the plunge. Anyone facing chemo should learn about "ports" and the trade-offs. In the end, maybe I should have gone with a port, but I did not and I made it through four doses of chemo before we had to stop. For my Stage, grade, and OncoType score, it could be argued whether or not I needed chemo and whether six doses could have helped more than four, but there will always be another study in progress and we just have to decide using what we know when we face the decision. I'm still looking forward to more TAILORx results.

As you gather data, there will probably be a lot of new scans and tests. I used to watch the TV show House, and, after all my scans, I completely understood why Dr. House hates full-body scans: it seems like they always find something and then you get to worry about that new something until they prove whether or not it's benign. My bone scan came by clear, no metastases, but my C/T scans found liver spots and lung nodules. The liver spots required an MRI follow-up, and I got to learn that a) the spots were benign and b) I hate MRIs. The lung nodules were small, and I'm now coming up on the next C/T scan to follow-up on my lung nodules because nodules under a certain size seem to always get labeled for follow-up scans. From what I've been told and what I've read, a large percentage of chest C/Ts find lung nodules and the majority are benign but there's the tedium of more scans and learning to be at peace between the scans while they build up the pattern of data necessary to formally declare them benign or not.

I hope your road is smooth and all the test results are swift. If there's any question at all you want to ask, feel welcome. I won't swear to answer, but I know how hard the first month is and you might even be surprised what I'd be willing to answer by this point. Getting poked, prodded, and monitored eroded my modesty a bit, shall we say.

Misty879

Hello,

I'm new to this site and am here for advice, answers snd supoort. I'm 37, disgnosed at age 36 in June and am having a mastectomy this Friday. I am so freaked out by this entire thing. I am even more freaked out after reading the previous post about full body scan. Will I have to have a full body scan? And if your lymph nodes showed no sign of cancer how could it be anywhere beyond the lymph nodes? And I thought stage above 1 meant lymph node involement? I am so confused and very scared right now

Kat1984

hi misty,

I'm sorry that you have to be here! It's a very scary time. I'm stage 2a which means my tumour was larger than 2cm but no lymph node involvement. I only recently had a CT and bone scan, 10 months post diagnosis. It was clear and has helped me not be so anxious. It is very unlikely to spread if you have no lymph nodes effected. Do you know if you'll be having chemo or radiation? Ask as many questions as you like, for me I felt knowledge was power when I was diagnosed at 30 almost a year ago. You can do this

---

Misty879

Hi Kat,

I won't know if I'll be having chemo until after surgery. My Oncotype score was a 25 which my doctor said was a 16% chance of recurrence without chemo but if my nodes come back positive then I will have to have it. She said because of the mastectomy I will not need radiation.

My biggest questions were posted to the discussion forum how long does it take after mastectomy. If you have any answers to all of my questions I posted on there I am very open to answers. I am so scared of surgery. Believe it or not I'm more scared of surgery and anesthesia then I am of actually dealing with the cancer.

MirandaPriestly

Fellow 31yo diagnosed with IDC this year (June 14th). I had my bilateral mastectomy 8/11, so closing in on a month and just returned to work this week. Other than the side where they took the lymph nodes out, which doesn't have full mobility (above my head etc) I'm doing ok. I was able to have immediate reconstruction, as well, which is better than the alternative of tissue expanders I think. Although I am stuck with small implants that are the same size as my small boobs but that's ok with me lol.

I was Stage 1c, so a little different, but I was able to avoid chemo because of clear lymph nodes and margins. I do have to start taking Tamoxifen this week, though. My husband and I decided on Tamoxifen only for 10 years with a break for trying for a baby after 3 (and in my mine maybe a second a few years after that...but I'm keeping that to myself for now ).

Misty - as a HUGE scaredy cat myself the surgery really isn't as bad as I pictured. There are parts that suck (the drains are unpleasant), but the pain and anxiety meds helped me a lot - so don't feel bad to take them if you need them! The Versed before surgery was the best thing ever. I even took a selfie with my husband right before going to the OR and I don't remember anything right before which is preferable for me. The hardest part in my case is really the emotional aspect, but that just takes more time than the physical healing.

I'm sorry you all are here, but hopefully you can find the information you are searching for.

nikolova

Hello everyone,

Another Fellow 31yo diagnosed with IDC. I had Lumpectomy on August 2nd. I have invasive cancer, less then 1cm, Stage IA, Grade 2, 0/12 nodes, ER+/PR+, HER2- and K67- 15 % with no history of breast cancer in my family.

Currently I am living in Bulgaria ( Eastern Europe) and unfortunatly they don't do Oncotype here. So the doctors here recommend chemo just to be on the safe side based on my age. Unfortunatly women are overtreated, without knowing if chemo will have any positive effect or just the side effects. Now is up to me, hard decision to make.

I wish you all luck