In the nursing world I would be a “greenie”

Wonderwoman386

I’m sure you seasoned BC worriors have read this all before, the new girl just being diagnosed, scrolled though 3,000 posts and see a lot of similarities but nothing jumping out as “hey that’s me!!” So here is the post.

Help me, i’m drowning.

I’m 31 and had my first baby this past April, she’s perfect, 5 months old and just got her first tooth.

When she was 4 weeks old I found a lump, everyone said I was crazy and it was a milk duct from my failed breast feeding adventure but thankfully at my 6 week post partum visit my OBGYN suggested an ultrasound “just to be safe” that woman saved my life.

Well because of my age and my post partum status no one was in a real rush, US led biopsy and July 14th while I was taking the new mom “Look our baby is 3 months new today!” picture my phone rings and I have breast cancer.

I’m from NH, local onc said stage 2A based on mri and size. Dana Farber in Boston for second opinion verified and said surgery first(hey said they could book me 4-6 weeks after that consult date which would put me in oct for surg!) so I followed the advice of the big guys and had surgery in NH, I only waited 2.5 weeks(a total of 8 weeks from diagnosis)

Sept 6th was an 8hr day. Apparently from August to sept my speculated 2A- was actually 3B... tumor was 4.5cm, there were also areas of DCIS, 6/23 nodes were positive and 2/6 had macro growth, also tumor was invading skin. I had a double mastectomy and skin resection, implant on the right and expander on the left.

Medical onc. Reviewed my path report and said his plan is unchanged, I’m to start AC+T next week, my pet scan results are pending and I get my port in 2 days.

Is it me or is this process taking too long? Diagnosed in July, after imaging and second opinion and surgery wait, surgery wasn’t until sept, and now chemo starts in oct??

It’s terrifying knowing it’s a grade 3.

I didn’t learn about oncotype, tumor genomic assay or what lymphatic/vascular invasion was until perusing this site.

I guess my big question is, with my “upgrade” would you suggest going back to dana Farber? Should I advocate for oncotype or the tumor genomic testing? Are those automatically done? Will those result influence my prognosis? Should I request a copy of my path. Report?

I’m afraid this thing is going to kill me

ElaineTherese

Wonderwoman,

((Hugs)) What a shock for you, at age 31! I am sorry that you will be joining us.

Are you ER+? PR+? HER2+?

I was diagnosed at Stage IIIA, (5 cm.+ and 1 compromised node), triple positive (ER+/PR+/HER2+), and Grade 3. I was bound for chemo no matter what. Moreover, they only do oncotype tests on ER+/PR+/HER2- cancer and for patients who have less than three positive nodes.

At Stage IIIB, Grade 3, skin invasion, and multiple nodes positive, I'd say that your doctors would recommend chemo no matter what. It probably doesn't matter whether you stay local or go to Dana Farber.

I guess you could consider your chemo options. I also got AC+T, but that was due to my oncologist's preference. According to her experience, more of her patients make it through AC+T than through other regimens.

Also, things might change after your PET scan. If your cancer has spread to your bones or organs (liver, lungs, etc.), your oncologist might decide to take a different path than heavy duty chemo right now.

In any case, you should get genetic testing to see whether or not your cancer is the product of a mutation like BRCA. That might change your surgical choices (might have your ovaries removed), and may have an impact on your daughter.

((Hugs)) I know how it feels to get worse news about a diagnosis. Originally, my lump was "only" supposed to be 3.9 cm.

Wonderwoman386

Thank you, I don’t know anyone my age that has fought and won this. I feel isolated, none of my family or friends can relate and I can see it bothers them that they can’t “help” me.

had a “my risk analysis” done and have no gene mutations, no history of cancer on either side of my family tree, no cancer of a young age in my family going back over 5 generations. I am an anomaly. I hate not knowing why or how this happened. But I’m relieved my daughter is safe from BRCA.

My cancer is ER+ PR and HER2 negative.

Emotionally I feel so human. I took care of sick people every day I just never thought I would be tossed into that category. I feel vulnerable and that death is driving up the road to pick me up for lunch.

Physically I feel great even after surgery I still feel like someone is going to tell me “whoops! We messed up your test results” “just kidding don’t sue us!” I feel too good for how I think someone with stage 3 cancer should feel.

Did I mention I’m scared? I’m terrified. All day. Everyday

ElaineTherese

Cancer is a crapshoot. I had no cancer in my family, either (we're the "stroke family"). I don't worry about "why" this happened to me; I just think about forging ahead. But, that's me. We all experience cancer differently.

Just some tips I've picked up from many of the thoughtful breast cancer patients here at BCO.org:

• Ask yourself: Am I OK right now? Chances are that you are OK right now. You might be anxious; you might be depressed; you might be in pain; you might feel sick; but you're alive. And if you're alive, you're OK.
• Change "but" to "and." I love to do photography but I have cancer, versus I love to do photography and I have cancer. In the "and" sentence, the two can coexist and are not mutually exclusive. So change your "buts" to "ands."
• Practice mindfulness. Take joy from the moment. "Yesterday is history, tomorrow is a mystery, but today is a gift. That is why we call it the present."
• Ask yourself: why would I let something that I don't like rule my life? It's part of who you are, not all of who you are. Why give it any more power than you have to?
• Just live each day with peace in your heart, knowing it is what it is, and NO amount of worry will change anything. As it says on the "waiting for results" thread, "Worry does not empty tomorrow of its sorrow. It empties today of its strength." – Corrie Ten Boom
• There's no shame in asking for medications that you might never have asked for otherwise. Anti-depressants, anti-anxiety medications, pain medications, prescription sleeping pills – all of these drugs can improve quality of life. As many BCO.org patients say, "Better living through chemistry."
• Woody Allen famously said that 80% of life was just showing up. Well, 80% of fighting cancer is just showing up for all those doctor's appointments and treatments. It's as simple as that.

Please give your little one an extra hug. Join the "Starting Chemo in October" thread, and commiserate with your chemo buddies! Pick out a cool wig or headgear! (My wig was better looking than my natural hair.) And, take care. I know what it's like to be scared and fear that I wouldn't be here for my kids.

puppiesnalpacas

Hi Wonderwoman, I am so sorry you are going through this. I wish I knew how to stop being so scared as well!

My situation is similar to yours. I am only 29 with no family history or risk factors and was just diagnosed 2 days ago with IDC, grade 3. We were just getting ready to start a family, but that's now on hold.

Much love and positive wishes for you.

mustlovepoodles

What is "my risk analysis"?  Is this a brand of genetic testing or what? It always makes me nervous when people get excited because they "don't have the BRCAs"--there are other gene mutations which cause BC that most people have never even heard of. It happened to me. Initial testing proved negative for the BRCAs so I proceeded in one direction, only to get additional expanded testing which revealed two rare gene mutations, both of which cause BC! Totally changed my treatment plan and my life. And my daughter's life (she's positive too!)

So I was just wondering...

sbelizabeth

I think I recall being told that the majority of breast cancers can't be linked to a known genetic mutation. My mom, my full sister, and I were all diagnosed with breast cancer. Our half sister, our father's first daughter, died last month of metastatic disease. Both my full sister and I had the full-panel Myriad test, and neither of us had any mutations detected.

mustlovepoodles

That's true. Most breast cancers are simply random disease. My point is that sometimes people are so focused on the ones they've heard of that they don't explore expanded options. That was the case with me. Only after I questioned the amount and particular varieties of cancer in my family tree did they do further testing. And thats where my two rare gene mutations showed up. Had I stopped with the first BRCA test I would never have known and my DD would also not know that she carries the same mutatuions. Her BC risk is estimated at 58%. Same as BRCA2.

Wonderwoman386

“my risk analysis" is from myriad labs, it analyzes 26 genes for possible mutation, and then scales the mutation-

Example: some people have a 32% mutated gene that is linked to colon CA, while others have a 92% mutation, they would suggest closely screening for the person with the 92%. It's all about analyzing risk.

Before this diagnosis I was a huge numbers girl. I have times of absolute panic- but navigating this site, working this problem and being on the other side of surgery has completely changed my outLook ina VERY short amount of time.

I got educated, I feel much more empowered

Wonderwoman386

puppies- I’m so sorry to hear about your diagnosis, the fear can be paralyzing. Find the “success stories” forum, is very motivating. Also find some one who is in your age group that is thriving post diagnosis or already in the survivors circle- so helpful.

I didn’t know anyone who had beat this monster, and I thought for 3 months that I was going to die.

Surgery- nailed it, my team is awesome, chemo- 1 down 7 to go and it wasn’t as scary or awful as I had imagined. I have made 2 friends my age in my area that are slaying it, we meet weekly for coffee- most helpful and awesome ladies I’ve ever met.

You can do this.

One of my friends said “80% is just showing up, the rest is keeping a positive open mind and knowing that there is a finish line

Outfield

Wonderwoman, I was older than you (44) when diagnosed, but - like you - I didn't know anybody my age who had lived very long after diagnosis. I did know women diagnosed around my age: three of them, I felt like they were sitting on my shoulder. That was 7 years ago. My kids and 9 and 10 now, and I'm doing well. Last year there was a major study in the New England Journal. Using computer modeling, they attributed the improvements in survival in breast cancer to improved treatment, not improved "early detection." That was heartening to me, since my cancer certainly didn't qualify as detected early.

Hang in there. Your baby is beautiful.

Ddelorable

I know this is so scary, but I do know many women in your age group who have survived this. 4 friends alone all fought this with different diagnosis (stages 2-3, ranging from triple positive to er/per+ her2 negative. Some hadn't the gen, some didn't). I know its so scary, right now I am the only one of the 5 of us still in the

Stage2ire

wonderwoman, so sorry that your having to deal with this crap. I'm older than you..39...but I have two small kids. My eldest was just gone 4 and my little girl 17 months. My cancer was missed for 9 months officially, but I had breast pain while pregnant that in hindsight was probably the DCIS. They told me the burning pain was "normal" and just milk ducts.

Its terrifying though. Every day I pray I get enough time to raise my kids. I'm 4 months out from diagnoses, have had surgeries, started chemo. Had a wound infection at start of chemo that delayed things but just completed 4th dose now. I'm on AC+t. The AC part was doable. Lots of fluids day of chemo, take the anti nausea meds before you feel ill, rest when you can....hard with a baby, but try. I was like you, felt great even after surgery, it felt like a bad dream. I'm starting to feel the effects now but still doing what I can with the kids.

One day at a time, I've learned that planning too far ahead isn't a good ideas at the moment. But it can be done.

Good luck x