Anyone else out there on the younger side of diagnosis?

ann273

I was 27 at diagnosis and am currently on OS + AI.

samanthamala

Diagnosed at 26. I spent almost 10 years on birth control to make sure nothing held me back from my education - and now I'm sitting here 6 weeks out from chemo still having hot flashes. It's a cruel irony. I had a pCR to chemo though so I've got that going for me, which is nice.

It's an interesting point that the statistics don't really apply to us. But unless its 0% or 100%, statistics mean nothing to the individual. According to statistics, I never had cancer

kim40

I was 40 when I was diagnosed....5cm tumor and 14 positive nodes, triple positive. Thought my life was over.

I'm 7 years post diagnosis....I had my ovaries removed, both breast removed - had reconstruction, and in terms of treatment, I had the kitchen sink thrown at me. I chose Fermara and Zolodex injections before my ovary removal and have no regrets about it.

Hammie28

Kim were your nodes positive after chemo? I had 7/15 positive nodes after neoadjuvant chemo and have been somewhat down about it. Your story is encouraging

Lucca06

Hammie28 9/18 nodes were positive after neoadjuvant chemo for me. I was 43 when diagnosed and just posted yesterday in the 5 year thread. When I was told about the nodes after my mastectomy I was devastated and truly thought that was it but 5 years on I am happy and healthy.

Hammie28

Thank you Lucca. Getting that not so great path report after surgery has been a low point for me. The tumor was bigger than imaging had revealed... 8cm instead of "maybe 6cm" and the response to chemo was evident but "not great". And then there were still positive nodes so I've been a bit disappointed. I really appreciate your comment and I'm encouraged by your story

Lucca06

Hammie28, it was definitely my lowest point worse even than diagnosis as I thought at that point that chemo would 'sort it all out'. I couldn't stop fixating on it at first but gradually that eased and I didn't feel so overwhelmed. I decided to just focus on one day at a time and tell myself each morning that I was healthy today, in fact I still do! Don't forget you are ER & PR positive so Tamoxifen or an Al might be more effective on your tumour than chemo. It is a tough time but you will get there.

Nina27

Hey All,

Diagnosed at 31. Found a lump and saw redness but left it for months thinking it was a complication from my implants. Went for mammograms and ultrasounds and was told birads 3 no need to be concerned and come back in 3 to 6 months. I decided after antibiotics didn't help to go for a biopsy and low and behold it was IDC grade 3 and have now been staged at stage III with lymphnode and skin involvement. I am lucky enough to have 2 beautiful boys but hearing that I will never have a 3rd has been tough in the sense that choice has now been taken away from me.

I am also finding it hard to adjust emotionally with what I am going to look like, I know I need to do what I need to do to survive and I get that but every now and then I imagine myself with no hair flat chest (I have a hernia on my stomach and proper stretch marks) not one piece of my body will be desirable to my husband and for some stupid reason makes me a bit sad.

Silly hey, considering I would rather be alive and be there for my children than worry for a second how I am going to look.

Anyway, I start neoadjuvent chemo this coming week. I would be lying if I said I wasn't a little scared but for the most part I can't wait to start and get the healing process started.

Hope all you lovely ladies had a wonderful Easter Weekend.

xx

kim40

Hammie28 - I did not have neoadjuvent chemo.. I had my surgery first and after surgery is when I found out about how many nodes I had....I was taken back and totally devastated by the news.. I started chemo 4 weeks later....

7of9

I was diagnosed at 40. Recurrence at 44. I was on Tamoxifen but obviously it didn't really work. I had an ooph and complete hysterectomy and switched to Arimidex. I wanted the damn ovaries gone last time but they wouldn't do it (BRCA neg). Wish I had.

McClure77

7of9 : How have you found the hysterectomy?

I've been experiencing some changes in my uterus and ovaries. I have cysts on both ovaries and a uterine cyst now as well as abnormal thickening. They have recommended that I have a total hysterectomy. I'm grappling with this suggestion. I hated chemopause, and I hate to have to go through that mack truck menopause again. I don't know whether I should get a 2nd opinion, but it seems like this is the most logical solution. Even if these changes are not cancerous now, we'd end up having to closely monitor everything and why go through all that? Ugh, the logic isn't make me FEEL better though.....

politicomama

Can I ask how the sexual side effects have been for those of you who have been on Zoladex and an AI for a while. During chemo I went through chemopause, and it took a long time to get my girl parts to heal. I had severe atrophy, like it hurt to wipe. I spent 2.5 years on Tamoxifen and I was having rare side effects that involved my liver and platelets. I was scanned from head to toe and everything came back okay, but I started Zoladex last month. I am not saying that I need to have sex all of the time, but it is an important qol issue to me. I was 32 at diagnosis, 36 now.

myra104

Hello! I know Astro Glide works for some...you can order online...dryness hurts just walking👎🏻

I'm on Femara so don't know about The Z's yet.

Good luck!

smlowry7

Hello!

I was diagnosed in February 2016, at 31, while I was breastfeeding my son who just turned a year. He stopped wanting to eat on the right side about 7 months old, but I was still able to pump about 4-5oz of milk per sitting. I started to wean when he was about 10 months old and would work my 12 hr shift without pumping. I had full and knotty breasts when i got home and I noticed my right side was decreasing in milk supply and the knots wouldn't resolve. I contacted my OB and she gave me instructions to treat it as a blocked milk duct and to let her know if it didn't resolve. A few weeks later the main knot was getting bigger, about 3 cm, no redness, no signs of mastitis, no dimpling or skin changes. I called her back and she scheduled me to come in for my yearly and to see about this knot. She sent me for my first mammogram and US, which led to biopsies, and the diagnosis of IDC with +lymph node biopsy. Bone scan and CT were negative on Feb 15, my MRI the last week of Feb showed the tumor had grown to 14x9x7cm!! I did egg retrieval and embryo freezing prior to starting chemo on March 15 and my sister volunteered to be a surrogate. I have my 4/6 round of TCHP on Tuesday and my US a few days ago showed my tumor had shrunk compared to my first US, but there was still enlarged lymph nodes. It shrunk significantly after the first treatment and has stayed about the same (in my opinion, but I feel it everyday lol) Surgery will be 4-6 wk after chemo ends, then radiation, then reconstruction if i want it. My OC said I will go on tamoxifen for 5-10 years. I have no family hx, BRCA was negative, I was a college athlete, I'm 5'10", 167lbs, BMI 24.9, and we eat well. Since my diagnosis I have changed up my diet to mainly plant based, occasional chicken or fish for protein, no sugar, no white anything, no refined or processed foods, 90-100oz of 9+ pH water daily.

It's definitely difficult dealing with all of this, thinking about the future, and letting go of all of the what if's..especially when looking into the sweet face of my 15 month old son and my husband. I keep God first, a smile on my face, a positive attitude, and keep pushing through!

Kim40 - your story is a blessing! Being triple + can be terrifying, esp when my tumor grew from 3 cm to 14cm in a few months!

Thank you for all of your stories and encouraging words on this site! Stay strong!

DancingElizabeth

Hi All,

I'm on the "younger side" for breast cancer according to my BS and Oncologist - but - just barely on the younger side - as I am 48.

I hope it's Ok for me to post here.

I had a double mastectomy report last week.

Today - I was told I have at least Stage 3 A.

My sentinel node was positive and the pathology report shows a 14 mm area in the lymph nodes - that strongly suggests I have many more positive nodes.

I am scheduled to have an axillary node dissection - next Tuesday. (It wasn't done during the mastectomy - I don't know why and am not happy about that). Anyway - back to wearing JP pouches and dealing with tubes. Just when I got rid of them.

So, it's possibly Stage 3C.

The pathology report states it found "very large" and "bizarre" forms in the nuclei. And, the tumor is Grade 3. (They originally told me the Grade was 2 now it's 3).

I'm very depressed right now. I feel like my life is over. Sorry I just don't know what to do with myself. I feel SO alone and can't stop crying. My DH doesn't get it and wants me to have a "positive" attitude. I don't know how anyone could feel positive after being told this!

Anyway...I hope it's Ok for me to join...

georgiaredskin

Welcome Scared67,

Of course it is ok for you to join! I am sorry you have to but glad you found these forums. They have saved me and are full of compassionate, loving, supportive and intelligent people.

I am Stage 3C, and can understand your fear for sure. It is so scary how close that is to terminal/Stage 4. I also had a double mastectomy this month, and that in itself brings a lot of emotions with the huge change to our bodies. You are not alone.

Have they talked about chemo?

Hang in there!

Georgia

DancingElizabeth

Thanks so much for the warm welcome and very kind words, Georgia!

I am having chemo in about 6 weeks, followed by radiation. I would rather start the chemo - sooner than that though!!! But, I guess they want my body to recover from surgery.

I plan on getting a 2nd opinion on a treatment plan....

Thanks again!

LM070917

Hey scared67, yes you are definitely welcome here! Im sorry to hear about your diagnosis, but i can say it does get easier especially as time goes on once you get your main treatment (chemo and rads) completed. I'm 8 months out of stage 3a diagnosis and 35 years old, I can honestly it isn't in the forefront of my mind everydayanymore. I just make sure I look after myself and put myself first, which I never used to do. Whilst it's terrifying being given a diagnosis, things do get easier.

georgiaredskin

Hi smlowry7!

Sorry I didn't read back far at all! Welcome to the board! We have similar stories, but I am older (42). I was a college athlete also (swimmer), and was nursing my 10 month old son when I found a big tumor on November 27th, 2015. I didn't think it was mastitis because it was fixed and did not hurt. Sure enough, IDC, stage 3C. I know it was fast growing because my primary care doctor did a breast exam which was clear on 11/3/15.

I am so sorry you have to be here but thank you for sharing your story. That is awesome that you froze your embryos and your sister will be a surrogate!

God bless you!

georgiaredskin

It's my pleasure Scared67!

You will need all of that time to recover before chemo starts, for sure. Rest up!

Glad you are here

Georgia

Lindzanne

I was 35 when I was diagnosed this April. About two weeks before my 36th birthday. I was just skimming this thread and think it will be really helpful for me to go through.

laura_ingalls

hi ladies.

Thank god for this website. I have learned so much and felt so much better after reading these posts.

I was also under 40 when diagnosed. my oncotype score was off the charts, No family history...basically Same story as many of you.

I have one more infusion of AC and then I will get 12 taxol before surgery and rads. Wondering what the taxol will do? The AC chemo made me feel like I was dragging my own dead body around...

What are the references to the blood brain barrier? I didn't understand those. Please clarify.

Hugs to all. This is rough. It's ok to be sad and down. Laura

fightergirl711

I consider myself young at 44, hope you don't mind me joining. Although I feel like I aged about 10 years these last six months.

laura_ingalls Taxol is much more tolerable than the AC. Granted I had 12x Taxol before the AC (administered with the Herceptin and Perjeta) so I was healthy and strong in the beginning. But I remember telling my infusion nurse how I missed Taxol. And for some ladies the hair starts to grow back during Taxol too.

The blood-brain barrier is exactly that - protection around the brain that allows smaller molecules in, but larger, more harmful molecules out. Sometimes the cancer gets in, but the drugs that can treat them (like Herceptin) can't penetrate the barrier. That's the simple explanation anyway.

Lauraleigh16

Hello,

September 9, 2015 I got diagnosed with stage 3 BC at the age of 30!December I started my 20 weeks of chemo and my last chemo was May 4, 2016. I also had the zolodex injection every 4 weeks. I'll be honest with you, I HATED It!!!!! It was horrible! The side effects weren't to great. You won't notice the injection until probably your 2nd or 3rd month. That's when i did.

ash123

Hi Lauramiley2

Can I ask you what were the side effects of zoladex?

clarrn

Diagnosed just after I turned 30. I was lucky enough to have a doctor who ordered a mammogram and ultrasound even though my symptom was thickness and itchy rather than a lump. 96% of my ducts were jammed with necrotic DCIS, I was lucky to only have small invasive tumor but 1cm in my lymph nodes so chemo it was.

Had a daughter who was 2 at diagnosis. I just got the go ahead to try for a miracle baby but my fertility numbers are pretty non-existent unfortunately. I have been on tamoxifen for 2 years. My oncologist says pregnancy will not increase risk of recurrence.

No family history but found out that I have a genetic variation of unknown significance on ATM. Also very healthy and active before diagnosis, now struggling to lose my 30 extra pounds from treatment.

Lauraleigh16

Sure, My vagina area was super super dry, & it would itches. I had no sex drive pretty much. I tossed and turned At night.

Tmh0921

I was 27 at diagnosis in 1999

Shocked the crap out of my entire medical team, all of whose were of the opinion that I was "too young for it to be BC".

Unfortunately, it's really not as uncommon as it seems. I've met a LOT of women, in person and online, who were in their teens, twenties, and thirties who have been diagnosed with BC. When I was diagnosed there was a grass roots organization that was just starting to bring awareness and advocacy for younger women. That organization is called the Young Survival Coalition ( http://www.youngsurvival.org ) and they've grown tremendously over the years and have been very successful in addressing the challenges of young diagnosis.

Tracy

Edited to add: I recently had the Myriad MyRisk 25 gene panel testing done, and my results were completely negative.

Lovinggrouches

I was 41 at diagnosis in January of this year. I had pain in right breast, they found the cancer in LEFT breast with us and mri. Mine was measured 1.3 cm. 97 percent ER and 76 percent PR and her 2 negative IDC. Never had children. VUS of PALB2 genetic mutation. At the time, I didn't know I was 6th on moms side with breast cancer because we have little communication with them. Oncotype was 14, 0 out of 3 lymph nodes. Had lumpectomy and reexcision for clear margins with 20 doses of whole breast radiation with 5 of them boosts. Healing from total hysterectomy and will start tamoxifen soon. Kind of worried that I'm starting the med almost 8 months after diagnosis, but they didn't want my white blood cells to be low for healing. Feel like I've done all I've been advised to do and worried what 6 month follow up will bring. HUGS to all!

clarrn

Sorry ladies, I didn't realize this was a stage 3 group!