Updates 5/19 and 5/20: Diagnosis & Treatment

awsmGirl · May 2016

Here is my Diagnosis:

Stage 3 Breast Cancer, ER+, Invasive,

with lobular and ductal features

.
I have an approx 6cm mass (think nearly the size of a pool cue-ball), and a bit of the cancer in one Lymph Node, all on the left side.

Definitions:

"Stage 3"... means
...the breast cancer has extended to beyond the immediate region of the tumor and may have invaded nearby lymph nodes and muscles, but has not spread to distant organs. Although this stage is considered to be advanced, there are a growing number of effective treatment options. - Natl Breast Cancer Foundation
"ER+"... means that it feeds on Estrogen.
"Invasive"... is because it's fairly aggressive.
"Lobular" and "Ductal"... refers to the structures of the breast that are infected

Tests in the last week have confirmed that

My bloodwork is OK, all normal
CATscan was OK, not showing cancer spread to my body
BoneScan was OK, not showing cancer in my bones
MRI confirmed location/size of the mass

...these are all good things.

Treatment:

I will have the Port installed on Tu-5/31 and begin Chemo on Thursday June 2. The particular Chemo Cocktail they will be using is called "TAC" -- Taxotere, Cytoxan and Adriamycin, followed by a Neulasta shot the next day. I will have at least 2 courses of that (6/2 and 3 weeks later on 6/23) before I am tested again, to determine if the cancer is reducing and therefore responding to Chemo. Apparently, sometimes ER+ cancer does not.

If it IS reducing, then Chemo is continued for about 4-5months.
If it is NOT reducing, the next step would be Estrogen suppresion treatment

After this line of treatment, will come Surgery. If the mass has reduced, i will have a Lumpectomy. If not, then it will be a Mastectomy. Then possibly more Chemo, and definitely Radiation treatment.

i hope to survive, to live.

If anyone is able to offer informative, supportive advice, experience or otherwise, i sincerely hope that you will share with me!

~awsmGirl

awsmGirl · May 2016

Update 5/20/2016 - From today's POV

So, yesterday was a very long day.

Had an MRI -- big nasty needle in my wrist for the Contrast (and i am mega-squicky about needles, one of my chief anxiety-inducers), and 45min listening to loud machine noises. But not that bad (other than the needle, f*** that s#!t). The results confirmed the cancerous mass, its size and positioning and that it hasn't spread, so sorta-Yay.

Had a BoneScan -- another injection of Contrast, this time in the arm at inner elbow, and the Nurse did a great job, one-and-done, so yay there. And 45min in another big (but quiet) machine. These results confirmed that the cancer is not in my bones, so OMG F***ING YAY.

Met with my Medical Oncologist. He seems a nice guy, straightforward, kinda by-the-book (he shied away from my inquiries about Medical Marijuana, acknowledging the anecdotal evidence and that his job constrains him from recommendation). He gave me the "Diagnosis in about 10 words," supplied definitions. Both reassuring and frightening -- the designation of "Stage 3" is the worst part.

Met with the Team in the Chemo Room -- talked at length with a really nice Nurse who was super informative, having gone thru Chemo herself in the last year for ovarian cancer! My girl was all about the Medical Marijuana, having had _very_ positive results from her use (vaping) during her treatment. That's first-person advice that i feel i can rely on.

And my guy took me to lunch at Sonic between tests, where i got a Kids Meal with chocolate milk and tater tots and a cheeseburger, and a toy of Jake from Adventure Time!

Along the way, i enjoyed several especially nice moments:

* When i asked about getting my Diagnosis in "10 words or less," a nurse piped up "Being Beautiful!"
* A compliment on my attire
* A compliment on my hair (gotta enjoy that for the brief time before that's gone and i have to start over!)
* A compliment on my nails, especially the mock fingernail i painted onto the bandaid i have covering my fingertip where i tore my nail to the quick (ow!)

* Saw the Tech who was so kind to me during my recent CATscan, and was able to give him a hug and tell him that the results were "good, OK"!

And everyone really seems to like signing my "Journey Book," the prettily-covered composition book where i am gathering signatures and well-wishes from all the good people who are helping me on my journey.

I had a few mini-meltdown moments, but overall, now that i am on the other side of yesterday, i can be a bit more sanguine and positive about my prospects. My guy and i ended the day by sitting on the deck with a glass of wine, watching the sun set. That's a favorite, and our first time doing that in far too long.

Today, (5/20)

i am catching up on business, making calls , getting referrals, and so on. I set-up an appointment for a SHORT (*wahh*) haircut next Friday, and spoke with my longtime stylist for a pre-cut consult -- he can cut it so i can have a ponytail of my own hair, and possibly even be able to use strands of my own hair to create "sideburn wisps," for when i have to go crew-cut/bald (*WAHHH*) Unfortunately, his workplace does not allow him to cut/style wigs, so that's a frustration...

Also working on setting-up a Blog, which will likely be just a place where i re-post Writings , and where i can also provide a link to PayPal (TeamAwsmLeftTwix@gmail.com) and GoFundMe (gofund.me/TEAMawsm) for people who want to Donate, as well as a shipping address for people who want to send things.

That brings us up to date! Hanging in there.

~awsmGirl

tufi000 · May 2016

Same

I had the same diagnosis in 2002 and I am still here! The chemo was less effective than the docs had hoped as you know that possibility. Had 8 rounds of chemo, bilateral mastectomy, and radiation. I have been on Arimidex since then and will continue. Though there were initial side affects. they gradually diminished and I decided to live with it.....literally! The AI drugs...watch out for your bones! They leach the calcium.

I believe you will do well. They said mine was very aggressive and I opted for any aggressive treatment available.

Knowing I was doing everything available kept me positive about it all.

All the best

Pixie Dust · May 2016

awsmGirl said:
Update 5/20/2016 - From today's POV
So, yesterday was a very long day.

Had an MRI -- big nasty needle in my wrist for the Contrast (and i am mega-squicky about needles, one of my chief anxiety-inducers), and 45min listening to loud machine noises. But not that bad (other than the needle, f*** that s#!t). The results confirmed the cancerous mass, its size and positioning and that it hasn't spread, so sorta-Yay.

Had a BoneScan -- another injection of Contrast, this time in the arm at inner elbow, and the Nurse did a great job, one-and-done, so yay there. And 45min in another big (but quiet) machine. These results confirmed that the cancer is not in my bones, so OMG F***ING YAY.

Met with my Medical Oncologist. He seems a nice guy, straightforward, kinda by-the-book (he shied away from my inquiries about Medical Marijuana, acknowledging the anecdotal evidence and that his job constrains him from recommendation). He gave me the "Diagnosis in about 10 words," supplied definitions. Both reassuring and frightening -- the designation of "Stage 3" is the worst part.

Met with the Team in the Chemo Room -- talked at length with a really nice Nurse who was super informative, having gone thru Chemo herself in the last year for ovarian cancer! My girl was all about the Medical Marijuana, having had _very_ positive results from her use (vaping) during her treatment. That's first-person advice that i feel i can rely on.

And my guy took me to lunch at Sonic between tests, where i got a Kids Meal with chocolate milk and tater tots and a cheeseburger, and a toy of Jake from Adventure Time!

Along the way, i enjoyed several especially nice moments:

* When i asked about getting my Diagnosis in "10 words or less," a nurse piped up "Being Beautiful!"
* A compliment on my attire
* A compliment on my hair (gotta enjoy that for the brief time before that's gone and i have to start over!)
* A compliment on my nails, especially the mock fingernail i painted onto the bandaid i have covering my fingertip where i tore my nail to the quick (ow!)

* Saw the Tech who was so kind to me during my recent CATscan, and was able to give him a hug and tell him that the results were "good, OK"!

And everyone really seems to like signing my "Journey Book," the prettily-covered composition book where i am gathering signatures and well-wishes from all the good people who are helping me on my journey.

I had a few mini-meltdown moments, but overall, now that i am on the other side of yesterday, i can be a bit more sanguine and positive about my prospects. My guy and i ended the day by sitting on the deck with a glass of wine, watching the sun set. That's a favorite, and our first time doing that in far too long.

Today, (5/20)

i am catching up on business, making calls , getting referrals, and so on. I set-up an appointment for a SHORT (*wahh*) haircut next Friday, and spoke with my longtime stylist for a pre-cut consult -- he can cut it so i can have a ponytail of my own hair, and possibly even be able to use strands of my own hair to create "sideburn wisps," for when i have to go crew-cut/bald (*WAHHH*) Unfortunately, his workplace does not allow him to cut/style wigs, so that's a frustration...

Also working on setting-up a Blog, which will likely be just a place where i re-post Writings , and where i can also provide a link to PayPal (TeamAwsmLeftTwix@gmail.com) and GoFundMe (gofund.me/TEAMawsm) for people who want to Donate, as well as a shipping address for people who want to send things.

That brings us up to date! Hanging in there.

~awsmGirl

Sounds like you have everything in order

awsmGirl, sounds like you have everything in order and ready to fight this journey ahead of you. My BC was not as exstentsive as yours. Mine was only stage 1, grade 2 and a high oncotype score, which makes me high recurrence of it coming back. My ONC told me the other day I am doing great coming up with a cancerversary of 2 years in June. Had a scare a few weeks ago because of labs not coming back good. Had to have an ultrasound but things were good. You are going to be ok. Now at this time of day they have lots of different meds that can be used. Years ago the meds were not around. Your ONC and you can discuss everything that you want to ask. Seems like that you have already done this and got things in order. I hope you the very best in all your treatments your ONC and you decide. Let us know how you are doing. All of us pink sisters are here for you. YOU GO GIRL !!!!!! Hugs Pixie

Double Whammy · May 2016

Sounds like a good plan

You mentioned medical marijuana more than once. I was perfectly ok with using it if I needed it. I decided this all on my own, no medical input. I did not need it. Chemo was no walk in the park (I had Taxotere and Cytoxin), but it was tolerable with just a few down days each cycle. I don't see that marijuana would have helped as I had absolutely no nausea. Had some lack of appetite, but I was able to make myself eat - especially icecream!

You also mentioned your beautiful hair more than once. Has your oncologist mentioned that Taxotere can cause PERMANENT hairloss? This is a known side effect and I'm one who happens to have it. It's rare, but it happens. You should discuss this with your oncologist so you can make an informed decision for you and ask about other options if this is a concern. Make him justify why he is recommending it. There may be a perfectly valid reason. I am hesitant sometimes to bring this up, but the answer "I've never seen it happen to any of my patients" only means it's rare, not that it can't happen. My oncologist now has 2 patients (I'm one) with this. She now tells her patients about it and feels strongly that it is her responsiblity to disclose and educate patients. I will never get all of my hair back. It is what it is and I've learned to live with it, but it sure came as a surprise.

Good luck to you. It seems that you really understand what your course of action is going to be and have plans to get through it. You will. It's just hard getting through it sometimes, but soon, parts will be behind you and you will be proud of yourself for having done it all.

Suzanne

awsmGirl · May 2016

Thanks for the input!

It's especially good to hear from people in a similar situation. Gives me perspective and Hope.

But -- damn about the possible permanent hair loss! I suppose wigs are a thing, and if it's a toss-up between hair and life, well, that's a no-brainer... but Yes, i will be asking about that! MedOnc said i'd lose my hair, but nothing about forever! Jeez!

As to the MedMarijuana, i admit to enjoying a lil bit-o-that on occasion, and so i am very open to the idea of something that i already enjoy, as being a helpful part of my journey. One hears anecdotal reports of people having great results from it -- including from the Chemo Nurse who took me around the facility! She'd been on chemo last year for ovarian cancer and found it to be a real asset. The only thing is, i'm so very small-time, and my state (PA) has no MM program in place (that will take up to another 2 years to roll out: too late for me), so trying to "get connected" is practically impossible! Lolz, i look like (umm, i AM) someone's Mom, trying to score some Wacky Weed, lolol...

"Pardon me, young hipster pot seller, might i perchance obtain 2 marijuana's from you?" (the whole "2 marijuana's" thing, that just slays me, lolol)

"Yah sure, Moms, what are you, a cop?"

I keep asking tho, and hopefully if it's meant to be, the universe will put it in my way.

Teach76 · May 2016

My hair experience

Just sharing, I had taxotere and cytoxin. I did lose my hair, but after finishing it returned thicker than before in about 3 months. Hair on legs and underarms is almost nonexistent after 6 months post chemo, but I don't mind!

Double Whammy · May 2016

Yes, it's rare, but not unheard of

I'm not totally bald like I was during chemo. I happen to think it's worse. I have SOME hair, just not enough to cover my head. I look like the walking dead, so I shave my head and wear wigs. My hairloss result is typical of what others refer to as permanent loss from Taxotere. Some of the follicles reawaken and regrow, others are just plain gone/dead. Who knows why? It happens and should not be dismissed. Visit www.aheadofourtimes.org for more information. The percentage of women who had Taxotere and have this permanent side effect is being estimated at around 6-10%. That's not nothing. My life or my hair? This really isn't about life vs. hair - this should have been disclosed and informed consent obtained before administering chemotherapy. I am happy I'm still here to complain about this, but this is much much more than just a cosmetic issue for many. And the medical and pharmaceutical professions need to get their heads out of the sand and start paying attention.

bonbondidit · May 2016

I'm stage 3 also

Hi awsmGirl,

I am stage 3 also! 3a to be exact. I did A-C-T (Adri, Cyto and Taxol) I followed with the neulasta shot the next day as well. My port was put in under my forarm near my inner elbow under the skin. Please make sure to have them give you a script for Lanicane to numb your port before chemo treatments. I will tell you they say do it about 30 minutes before chemo. I say nope. It takes a perfect 1 hour and 15 minutes to feel absolutely nothing. I have tested this for a year now. So if your appointment is at 10am, started applying a dollap over the whole port and around the outline of it too. I use a see through bandaid I buy at Walgreens called NextStep (ill double check and update this post if its not the right name. This is the thin fine film that acts as a bandaid that they use on children to number their IV site. It works great! So I apply the first dime size amount and hour and 15 minutes before appointment around and on top and put the film bandaid over it. I will apply again in 30 minutes and then about ten minutes before the actual appointment. I did result to using some Mari and it worked WONDERFULLY! If it wasn't for that I'm not sure how I would have eaten. Honest truth. Also took stomache nausea down to a 1/4 of what it was before. Try hard to eat mainly protein, it will keep your energy up longer and buys you more time inbetween small meals. I noticed half the reason I was feeling weak was because of under eating. So I was crashing more often. I finally shoved a piece of chicken in my mouth and was suprised at how the energy came back and for longer amount of time. I have to say small sips of Caldo (found at any Mexican Restaurant ) probably saved me a million times. It's beef based with everything you need nutritionally melted into the broth.

I am Estrogen + also. I did a double mastectomy (skin sparing) and ended up having 18 lymph nodes removed under my left arm. 4 positive.

My surgery was Aug.5 2014. I did 4 rounds every three weeks of AC and then 4 weekly rounds of taxol after my first three week dose that was waaaaaaaay too much for me. I had bone ache pretty bad for 8 days but then they adjusted to every week. I guess people in their 40's don't tolerate taxol as well as people who are post menopausal. That is what my doctor told me. I followed up with 48 rounds of radiation and I'm still able to be here and type all the info to you. So I got through it, just as you will too. Please txt me anytime if you need/want to talk because I get it and so does everyone else here. 512/227-1649.

BIGGEST of hugs!!!

Bonnie

dpletzke · May 2016

thanks for sharing-I like to

thanks for sharing-I like to read your posts