Advice for a Newbie?

BlueCowgirl

Where do I start...Hello, everyone. I was diagnosed with BC about a month ago, and it's been a crazy whirlwind ever since. Long story short, I am getting treatment at Dana Farber, had my first round of AC Chemo last week, and feeling woefully underinformed when I look at all the signature lines of the folks here who know all the details about their diagnoses. 

To make a long story short, I felt a lump, had my first-ever mastectomy (I am 38), radiologist was immediately concerned, had an MRI and then a needle core biopsy which showed two "Invasive carcinoma with ductal and lobular features", one 3.8cm and one 2.2cm. And also a Metastatic Carcinoma involving a lymph node.

I *thought* I had a pretty clear idea of what all this meant, but really, I am beginning to think I have no clue. Not sure why I am getting chemo first, second guessing my decision to leave my home/support network/boyfriend/dog to go to a big cancer center, hating chemo.

I know there are lots of others who have been through this and come out the other side...Any of you willing to help me figure out what's currently plagueing me, and that is - WHAT questions do I need to ask my oncologist at this point so that I have a better understanding of what I'm facing?

So much for a short story...But one more thing, I've read a number of threads here, and wanted to say how impressed I am with your stories and your amazing strength. I am so sorry there are other women out there who have to go through this, but at the same time it is a comfort to know I am not alone.  

diana50

hugs. hang in there. the hardest part of all of this is learning you have breast cancer.  once the ball starts moving...surgery...port...chemo..rads...hormone treatment...it is all do-able. you have to keep your head up..do one day at a time; do not get too far ahead of yourself...make relationships with your treatment team...and understand your diagnosis and what is going on with your body. 

rest...get support...rest....never give up.

i am 9 years out. don't get caught up in statistics...etc.  just take care of yourself...fight and never give up.

d

karen1956

As Diana said...its doable...a hard journey but doable....be kind to yourself.....allow yourself to let others take care of you....accept offers of help for meals, errands, help with kids, whatever you need....I was never one to be a patient, but I found during Tx that I could accept help....Do as much as you can, but don't do too much...only you know what that is.....its one day at a time and sometimes one step at a time....but you will get through this....btw...I just celebrated 5 years!!!

faithfulheart

Bluecowgirl,

Diana and Karan are right on. This is doable, and defenitly take this journey one day at a time . A/C is the hardest part, it's a tough one, how many rounds do you have and will your dr. be doing

dose dence taxol, or do you know? Rest alot like diana say's. You will get the strength you need.

It will get easier, believe me I know how you feel, it can be very overwhelming. Ask your Dr. to give you a full run down of your treatment plan, don't be afraid to ask questions.

We are here for you, sorry you had to join us, but these gal's are such special and amazing women, come back and let us know how your doing.

you are in my prayer's

Stephanie

BlueCowgirl

Thanks for the replies and congrats Karen on 5 years!

The chemo plan for me is 3 more AC and then 4 dose dense Taxol, followed by mastectomy. The first AC treatment really kicked my ass. One day at a time is right...

KerryMac

Just want to welcome you along, I am glad you have found us!

I don't have much to add that hasn't already been said, but I would say just take things one step at a time too. Don't think too far ahead, it will all overwhelm you!

Right now you sound as though you are doing great. Chemo is the hardest physically to get through, so hang in there. Treat yourself well, and find some time to do things you enjoy.

And remember, tough as all this is, you will get through it and get back to your life! I was in the middle of Chemo this time two years ago, and now I am doing really well, I am training for my second half marathon and I have so much hair I look like a sheepdog!

Use the boards a lot - I would have been lost without the help of the great women here.   

Celtic_Spirit

You may receive a steroid during chemotherapy called decadron (dexamethasone). It's going to make you feel crazy. It makes some people feel aggressive, while others become more weepy. Just know it's the drug and that you're not losing your mind. I wish someone had told me that prior to chemo. I was more concerned that I was going mad than I was about having cancer.

kimber3006

Welcome Cowgirl!  It sucks to need to be here, but you couldn't find better company.  I can only echo what the others said in that you should ask lots of questions - I kept a cancer notebook with all of my notes and questions so I wouldn't forget by the time I got to my appointment.  Just keep asking until you feel you understand what's going on and why.  Then trust in your treatment team.  It sounds like you chose to try and find the best, so that should be a comfort.

It's pretty common to do neo-adjuvant chemo (before surgery).  The huge plus side to it my mind is that you get to "see" the chemo working.  I had surgery first, so without a tumor to watch shrinking, I'm left wondering if the chemo worked. 

BlueCowgirl

Celtic Spirit,

THANK YOU!!! I posted another thread about this, I had actual hallucinations, my onc thinks due to the dexamethasone, and again, while I hate that others have experienced terrible side effects, it is so reassuring to hear I am not crazy or the only one with certain less common SEs. Big thanks!

Strangely, I was already familiar with this drug as I am a horse trainer, and it is used commonly on horses with allergy issues - I always have injectible Dex in my meds cabinet, and it is a drug that is legal for showjumping horses to use at the prescribed therapeutic dose. Scary thing is, some people (NOT me!) will also use it off-label to "mellow" their show horses. I can tell you after experiencing what I did last week, I will not be as cavalier about using it for minor allergic reactions, and I will absolutely NOT get on a horse after giving it Dex again, thank you very much!

BlueCowgirl

Kimber, thank you! I *knew* there was something good about chemo I was forgetting, LOL. Yes, I am looking forward to seeing tumor shrinkage...I have a freaking gigantic mass, actually two of them. I visualize the drugs working like PacMan eating all the little cancer dots, kinda weird I know, but it works for me

lonekazoo

I'm posting this (first post) as a husband, my wife was diagnosed Dec. 27th '10 with stage IIIC IDC, grade 2, ER+/PR+/HER2-.  Her diagnosis sounded much like yours, so I thought I'd post.

She started neo-adjunctive TACx6 in January, and just had her 4th tx on March 21st.  We found out on her 4th tx that Doxorubin was no longer available (worldwide shortage), so they substituted Epirubicin.  She hasn't noticed a difference.  I did have her chew on ice for the last two treatments, which eliminated her mouth sores, and also had her ice her hands, though she had not had any side effects there yet.

She has two lesions, one at top center of her right br. and one axillary under her right arm.

She has been a trooper through her treatments, the roughest thing for her has been the loss and/or change of flavors, and the loss of sleep.  She lost her hair on day 14.  She has continued to go to work nearly every day. 

After the 1st treatment, the axillary tumor began to shrink noticeably (starting out at about 3cm), and as of right now it's undetectable.  After our last exam, her oncologist finally said this week "I think the treatments are working well."  He's not a talkative doc, so that was very encouraging to us.

It was very tough for me to answer all of our friend's questions about why she hadn't had surgery yet, and this forum has been great for helping me to understand why she started her treatments the way she did.  I'm very grateful for all who are posting here helping new folks like us understand better some of things that we're going through.

BlueCowgirl

Lonekazoo, there is another thread on this forum all about NeoAdjuvent Chemo with a lot of great information that was very helpful for me. If I can figure out how to post a link to it, I will... Best wishes to you and your wife.

BlueCowgirl

Here is that link:

karen1956

lonekazoo...welcome...glad you found us...like Sherrie...I also had TAC chemo, but it was after bilat.....hope your wife will decide to come and visit here....