T3N0M0 Sisters club

light1

I thought to start a new forum for all sisters diagnosed with T3N0M0 breast cancer I learned that is it a rare kind, and would like to know if there is anyone with the same diagnosis, how was their journey and treatment options.

bluefin

I started out as T2N0M0 with a 3.5 cm tumor. Tumor grew to 5.4 cm during chemo (while on Taxol) which put me into T3N0M0. Even though I ended up with a PCR from neoadjuvant chemo once we found the right drugs and no cancer found at the time of surgery, they are recommending radiation due to being T3N0M0 with a highly aggressive tumor (Grade 3, Ki67 of 72%) and my age (32).

Looks like there's not many of us?

light1

Glad to hear from you blufin, but I am sorry though that you are also going through this journey at such a young age. I was officially diagnosed in 2014 even though I felt the lump in 2012, mine was 8.5 cm grade 2. I had chemo after surgery , radiation and tamoxifen I stop the tamoxifen after taking it for 4 months because of blur vision my vision is now ok after I stop but my onc want me to start again and I am considering it. So where are you now in treatment? Wish you all the best.

bluefin

I just had my CT sim for radiation a few days ago and I start on August 13th. The RO talked me into it and had enough studies to back up her stance. I'm not thrilled about having to do radiation, but I want to do whatever I can to keep the cancer away for good.

I too have to do Tamoxifen which I will start after radiation ends. That's scary about the blurry vision. Did your MO give you any options other than Tamoxifen?

light1

Yes the blur vision is scary, I am still considering it though however, my my onc says the alternative is zoladex and Amorasin but she still think I should try the tamoxifen again as it is the best option. Don't be afraid as we all are response to treatment differently, you might be able to tolerate it well.

Radiation was also optional for me but was convinced to do it, my only problem with it now its has prolong my reconstruction process. Are you doing reconstruction? Get some 100% aloe vira

bluefin

I hear you on that. I had TE placed at the time of my BMX and am planning on final reconstruction with a DIEP flap, but my PS won't even consider that until 1 year after the end of radiation otherwise the risk of flap failure is much too high.

How was radiation for you? Did you radiate nodes as well? My RO wants to radiate everything and "throw the book at it" so to speak.

light1

I am still considering which way to go as regards to the reconstruction process, my TE is still in, but I am leaning towards doing the exchange without flap. my chest wall was radiated, no nodes and boost. As I said earlier we are all different and our treatments are aggressive base on the grade, size and age. We just have be strong and positive and hoping for the best.

For me the radiation wasn't that bad, until towards the end, that when i felt the burning, aching .. i usually apply the cream i was given to me right after rad and and later use the refrigerated aloe Vera home. Hope all goes well with you

bluefin

I'm glad to hear the radiation wasn't too bad for you. Thanks for the aloe vera tip.

Good luck with the exchange. When are you thinking of doing it?

jbdayton

I did radiation for 5 weeks and no boosts. I slathered on only Aquafor and never burned and skin held up remarkably. I did my DIEP flap 4 months after last radiation. I did have flap problems but my problem was veins not radiation my skin did great. I also had my chest wall and nodes radiated. Good luck in the rest of your journey.

light1

Welcome jbdayton, thanks for sharing your experience with us. How was was the DIEP flap healing process and outcome? Can you still do all the stuff you to do? I am glad you are doing well so far. Blufin, I plan to do my exchange early next year, hope all goes well. I know the risk is high for radiation skin

Lojo

Hi,

I'm not technically in this group but I was close -- premenopausal,ILC tumor just a little shy of 5cm, but no nodes, which surprised my surgeon, I think. I had a low Oncotype score and a grade 1 tumor,and initially my MO thought just tamoxifen, but both my surgeon and two radiologists said to do rads ( I had a BMX without recon) because of the size of the tumor and close margins, so I did (axillary too). There's some suggestion that post MX rads are beneficial to T3N0M0 patients. Rads wasn't fun and my skin did break down but it's fine now (more than a year after) and I have no regrets, though I did deliberate a bit at the time. Edited to add that so far (more than a year) I've had no issues with tamoxifen other than occasional very mild hot flashes (not enough to bother me)

light1

Hi Lojo, thanks for sharing your experience. it's good to know that you are doing well on tamoxifen. All the best

NisaVilla

I just wanted to introduce myself as another T3N0M0 sister. I know we are supposed to feel very luck for no nodes but we must not forget there are T4 sisters with no nodes and also some data that indicates that about 5-8% of invasion travels to nodes at the other end of the "node tree" meaning away from closest location to tumor. I say this to encourage sister to stay on Tamoxifen or Arimidex as they are likely the best allies for ER+ I keep hearing stories of young women giving up on Tamoxifen with grave consequences. Please stay on any of them no matter what. Hugs

Mary_Lynn

So nice, in a not-so-nice arena, to see other T3N0M0 people. I've been feeling very weird because it would seem that the larger the tumor, even if low grade, the greater the chance of metastasis simply because it's been around a long time: MD said 8-10 years. I agree that it is hard to believe there was no node involvement with a large tumor.

HX: 66 years old at dx, no uterus since 1977, no ovaries since 1983. Horrendous hot flashes led to daily Premarin until dx in September, 2013. All MDs I saw, in 3 states and Canada, had prescribed Premarin without question because research was on women with all their parts, using a progesterone/estrogen combo. My cholesterol, blood pressure, bones, skin, libido and energy were great. Newly married in 2010 and living as honeymooners.

I noticed a thickening in right breast, with normal digital mam and ultrasound, although with the density disclaimer for my extremely dense breasts. I paid out-of-pocket for a tomosynthesis mammogram in September, 2013, which showed 3 "small" areas in right, 1 in left.

Bottom line was ILC, 7.2 x 3 cm, Grade 1, 0/1 nodes. Oncotype 11, therefore no chemo. (Doesn't feel like I "really" had cancer since I didn't do chemo.) Had lumpectomy, then re-excision to get clear margins. 33 rads, including 8 boosts. Cosmetically, I'm just like I was before the cancer had bulked up my boob to match the size of my left. My right had always been 1 cup smaller than my left, so now I'm back where I started from. BS did an amazing job ---- said in 25 years she had not removed that much tissue with a good cosmetic result. Glad to be her experiment:))

On Arimidex for 21 months. SE have led to Prozac (for hot flashes), Lipitor (cholesterol), Atenolol (HBP) and a multitude of OTC supplements. Bones are still fine. Energy is 50%.... but then again, I am 68 and just got back from 3 weeks in China, Vietnam and Cambodia, after a month in Kenya and Tanzania. Vegas in 2 weeks. Maybe energy is okay, just not 35 anymore? Revisionist history of what I "used to be?"

MO called me "cured," then switched to saying I "might be one of those who is cured." He acknowledged that he might possibly be wrong, but probably isn't. Oddly, I believe I am not going to have a recurrence, but feel uncomfortable thinking that. I am waiting for the shoe to drop, but living as if it won't.

Karan_bc

mom diagnosed with stage 2b IDC her2 neu positive, t3n0m0, ER/PR -ve breast cancer, tumor size in left breast 6-7 cm, doctor decided chemo first with herceptin, biopsy report says occassional lymphovascular invasion. concerned, prognosis?

lago

I know this is an old thread but I thought I should be counted. Tumor 5.5 cm IDC + 1cm DCIS, triple positive. Was diagnosed 7 years ago. Coming up on 7 years NED. Did surgery first, then chemo, nomrads(in gray area

Keebee85

hi lago! Thanks for reviving this thread!!! Your stats are so similar to mine, and it's so nice to see how well you're doing! Seven years NED!!! Congrs

Catdancing1

Diagnosed in Feb. 2016 with Stage IIB IDC, T3N0M0. My tumor was 6+ cm. I had lumpectomy, followed by ACT (dose-dense Adriamycin and Cytoxan, followed by Taxol). I then had 35 whole-breast rads. I will be on Arimidex for a total of 10 years. I had a mammogram yesterday, and saw my Oncologist. So far so good. I am 13 months post chemo. I feel good and I'm determined not to waste a minute of my life. I feel in my heart that it's behind me but of course I know it could show up again and I am choosing to push that out of my mind and live my life.

Annie-B-7-14

Hi Catdancing!

Congrats on “so-far-so-good” !

I’m a T3N0M0 too. Tumor was 10+ cms ER/PR+.

light1

Hi ladies,

Pray that everyone is doing well and trying to stay positive. BC journey can be difficult, but we are stronger together and insharing our experiences.