New To the Club

Edsluv - I am so sorry you had to make the awful transition from being on the 'helping' end of oncology to the patient side.  It IS an emotional rollercoaster in the beginning, BUT it will settle down and your little boat will stabilize and stop rocking so much as you get more info, make more decisions, formulate a plan and begin to move forward.

I was a total emotional wreck when i was diagnosed. Very differently from you, I was a total outside to the medical field and didnt' know anybody who had BC.  It took a few weeks and a lot of hard work, but I did get my feet under me again. I got a peer/mentor from our local breast cancer coalition and she told me that once I had the first chemo, and lost my hair, the worst had pretty much happened, and I would know that I could make it from then on.  She said that you build momentum and confidence as you go forward. And I found that to be completely true.  

None of it was fun, and I wouldn't have ever CHOSEN to go through this, BUT it was manageable and doable. I worked throughout, stayed active, and overall did well. (Hey, it DID suck - I'm not denying that!)  But you will make it through.

You asked for advice. Mine is:
Get a relaxation/visualization CD and load it into an IPOD. Keep it next to your bed and use it twice/day. Also use it when you wake up at night and can't fall back to sleep. I used one by Dr Peggy Huddleston (you can find it on Amazon) - it was a lifesaver for me.

Ask for anti-anxiety and/or sleep meds if you need them. I used them briefly at the beginning and they really did help.  Don't be proud or stubborn (speaking as someone who IS both) - you need to conserve your strength and you NEED good restful sleep.

Once your treatment plan is in place, join a thread on this site that is for those women. There is a chemo group that starts each month. That was extremely helpful for me.

Take someone to each of your appts. Or bring a portable recorder. And take notes. You ARE NOT thinking clearly - your mind is on overdrive. Do not expect yourself to remember things clearly, or at all. 

If you have to do chemo, consider seeing an integrative physician (alternative doc) if there is a reputable one near you. I saw one several times and he and i worked together to develop a supplement/nutritional regimen that REALLY helped me.  Other women meet with a good onco-nutritionist or naturopath.  Use EVERY tool available to you to keep you strong and healthy as you go through it.

Enjoy your family. Take some time AWAY from this - even if it is going for a walk or to one of your kids' activities. Make it a 'no cancer talk allowed' period where you can just LIVE and enjoy it.  Cancer steals so much - WE have to set boundaries as to how much we will allow it to take. When the cancer/medical/fearful thoughts pop into your head during that time, just tell them "not now."  Those little breaks really refresh you and give you the strength to keep going. And they help your husband/kids to know that you are still there and still their mom.

The beginning is THE WORST. Even though the medical stuff hasn't started yet, this is actually  the most difficult time.  It WILL get better. You CAN do it.

And remember, all these amazing ladies on this site are here to help and support and love you. They TRULY DO understand. So stay active, ask questions, get the support you need. I would imagine the transition from provider to patient is pretty challenging. I am the type of person who always resisted/hated asking for help. It was good for me to learn to let others love and take care of me sometimes. 

PM me if you have any questions.

In sisterhood and support,

Amy

Hi Edsluv!

I am a newbie here too - just diagnosed last Friday at the age of 37 with two little girls - I just gave birth to my second 8 weeks ago.  I am also an RN (not in onc though) and live in San Leandro!  Maybe we can meet up sometime!

I am still meeting with doctors to discuss treatment plans and very overwhelmed.  Just wanted you to know you are not alone in your feelings - and we will beat this! 

  AmyIsStrong what you had to say was wonderful and absolutely excellent.  That was so well stated and helpful.  God Bless You! I an recently diagnosed  DCIS grade 3 and 67 yrs old.  I never thought I would be a cancer survivor.  I am scheduled for surgery 5/25, plan to have a mx, having changed my mind re: lump. w/ radiation.  Not sure about reconstruction. I just wanted to thank you for the sage advice, wish you well and send a big Montana hug. 

Elaine - Sounds like you are comfortable with your decision which is so important - reconstruction can always be done later!!  I will be thinking of you as your date nears!!  ((HUGS))

Hi Leanna!

Nice to "meet" you!  Unfortunately my nerves are still all over.  My MRI showed a cyst on my liver, the oncologist wanted to do an ultrasound to follow up on that.  Well the ultrasound showed that it was a cyst, but with two lesions sitting right next to it.  Not sure why the MRI didn't pick that up.  The oncologist thinks it is nothing, but wanted to do a CT to make sure - so I am having that done tomorrow.  Lots of scanxiety!!!!  I'm worried that it already spread to my liver right out of the gate. The onc thinks they are hemangiomas - let's keep our fingers crossed!  Good luck with starting chemo on Thursday! 

I had my BRCA test drawn last Monday - I would like to get those results in quickly to determine bil mx route!  Just would like to get on with things in general.  Lots of waiting!

Leanna - good luck with your chemo on Thursday.  Let us know how it goes!

Hugs!

Sherry - what will you be doing "under" on Thursday???  What did I miss?  (chemobrain, but I haven't started yet). 

In_cog - THANKS!!  How was your scan?

Bundle of nerves... at least the anxiety-induced chest pain has stopped for now!  Let's get this party started!

Leanna- having second surgery in the morning.  Re-excision and auxillary node dissection.  They will also put in a port for my chemo.  Keep us posted on your chemo treatments.  I don't think mine will begin until middle of the summer.

 in cognito - you're right - two weeks isn't much of a difference.  Prayers your way for the decision you need to make.

Ladies I am so sorry that you are all now a member of this 'sucky club'!! You will make it through - and I agree, the initial diagnosis is the worst!! I have been diagnosed twice, '98 in the left breast - '09 in the right. First go around - lumpectomy, chemo, rads. Second time - bilateral MX, chemo, reconstruction (tried immediate with tissue expanders then hoped to move on to implants - but the expansion process failed miserably do to rads in '99).

My biggest piece of advice would be to take it all one step at a time. You have to be your own advocate - whether it be dealing with your health care professionals, insurance, family or friends. Do not be afraid to speak up and ask for what you need! Always, always, always get a second opinion - especially when it comes to reconstruction! There are plastic surgeons, and then there are plastic surgeons who specialize in reconstruction - it makes a world of difference who you choose!! 

The ACS has a service, I think it is called 'cleaning for a reason' that will provide a cleaning service to come to your home one time per month while you are going through chemo - contact your local ACS for more info.

Although you are mothers, and your main concern is to care for your children, now is the time to be selfish, and care for yourself. You no longer can be everything to everybody - please remember that!! The goal is to come out of this alive and healthy, and you will not be able to do that unless you put yourself first. (It took the second time around for me to learn that lesson!) Many friends and family members will not know what to say or what to do for you - but will say 'let me know what I can do to help'. Let them help!! They are offering a gift, please accept it! Whether it is to watch your children for a few hours while you sleep, go to the grocery store, drive you to your appointments, or orgainize people to bring dinner over - please let them help - they want to help but are not sure how!!

One last thing - try and continue to exercise - even if it is just a walk around the block - you will feel better!!

I wish you the best of luck - feel free to PM me if you have any questions!!!

xoxo

LouAnn

Sherry - I'm with Leanna on the one at a time theory. My surgeon recommended that I have the first mx and get healing, treatment, etc. out of the way before I tackled the other side or any reconstruction and I'm so grateful. Even though I thought I knew how I would feel after, it's just one of those experiences that you can't truly understand until you go through it. I'm mourning the loss of one breast, but on the other hand, I'm so ready to get rid of the 2nd. I don't think I would have known for sure that I was doing the right thing if I had done it all at once, and of course I didn't know what my treatment would be when I first had surgery, so I think it was wise that he didn't recommend immediate reconstruction. Yes, it prolongs everything, but your body has more of an opportunity to deal with each thing individually instead of everything at once. Whatever you decide, good luck!

P.S. It's unfortunate that we're all here, but it's nice to be here with women near my own age (I'm 39 with two little girls). That was one thing that made me feel so isolated initially because almost every survivor I knew was post-menopausal. 

Hi Ladies,

Sorry to hear you've joined the ranks of bc... It's a roller coaster ride, but you are not alone!!

So many young moms here and that certainly adds an extra twist... There are great support groups for children out there.  My kids were 9 & 11 when they joined two years ago (it was my 2nd primary bc, previous was non-invasive in 2002).  It's been the greatest source of support for them, because they made friends who could finally understand them.  The group here in Denver Colorado is called "Kids' Alive", it's all about the kids & helping them cope.  They meet once a month on Sat. mornings)  It's fun & up lifting.  Here the group even organizes an over night trip to a mountain resort.  I know you have enough on your plate, however this is something a friend or family member can research for you!

If you have BFF or a close relative... Put them to work!!  People want to help, but you need someone willing to organize the help... Meals, house cleaning, chemo rides... You end up so exhausted by all the different aspects of the disease that you might not have the time or the energy to call people yourself.  It's nice if you can find someone who's willing to take charge of ALL those crazy details (feeding the kids, grocery shopping, laundry... the list is long!).  It will be a HUGE relief for you!

Tammyg,  those taking hormone meds are the hormone + receptors.  I've been on Tamoxifen for 1yr so far (4 more years to go!).  Since my cancer cells need estrogen to grow, removing it from my body will improve my prognosis (even though I had my ovaries pulled, fat cells in your body also produce estrogen).  My oncologist actually said that Tamoxifen is half my survivability!

LOL to all of you.  My thoughts & prayers are with you.

Kathy

In cog - 2 weeks = not much time.  Your peace of mind with your choice is much more important!!  That will affect your healing, so go with your gut/heart!!

Sherry - Positive recovery vibes coming your way!!!!!!!!!!!!!!!!!  (HUGS)

GAGirl - Hi sweetie!  I'm with you - also an RN in Onc/Med Surg.  Too much info is just too much info!   Sending positive vibes as you await ER/PR, and HER2.  In keeping with my impossible being (if it's the minority of the %, it will happen to me.... I'm a walking Murphy's Law sometimes... oh, I digress) my HER2 could not yield results with normal testing and had to be sent out for an additional 8 day wait while it was processed via FISH... hope yours comes back quickly!!  Let us know which chemo plan you come up with!  I'm on Taxol and Herceptin (1st yesterday), and going to try and work Mon, Tues, Wed, chemo Thursday for as long as I can.  Will probably go on leave when I get to the AC tretments!   

Swastew - thank you for the great advice.  Will have to look into the ACS for house-cleaning - that would be awesome!!  My husband is wonderful, but a great cleaner, he is not!!  LOL

Shadow -what is this look good feel better I keep hearing about, and how do I find one around me?  What do they do?  So glad cold caps worked for you - what chemo did you do?

Tory - premenopausal here!  age 41, with 3 kids ages 3, 8 and 17 (yes, I like them spread out!!   LOL)...  we can do this!!    I'm cold all the time, so almost looking forward to hot flashes (bad joke???) 

Hey  TammyG - we'll probably be on Tamoxifen for 5 years after - that's the hormone for pre-menopausal women.  You must be so busy with your children - boys/girls??  Sports/school - how are you holding up??   Let me know what chemo you get - we're very similar, except I'm HER2+.  When do you think chemo will start - I'm in the May group - you may make that group - they were able to start my chemo 5/13, after a 4/23 diagnosis!!  That was great - because after diagnosis, I was soooo anxious to start getting rid of the cancer!  (((HUGS))) sweetie - please PM me anytime if you want to vent/talk/share!!   We can get through this together. 

Calypsogirl - I'm going to look into that for my 8 year old son!  My 17 year old daughter is pretty self-sufficient, duh!  She will actually be 26 on her next birthday... my 3 year old is still oblivious, so everyone once in a while we throw the word "cancer" at him, and he runs away to play!  However, we know we need something more for the 8 year old... that's an awesome idea!  I hope there is somethinng around me (on the east coast here).  Spent some time in Wyoming and Colorado though - beautiful there - my daughter was born in Poudre Valley Hosp in Ft. Collins!

Hey NatureGrrrl - OMG - nicely said!!!!  We are all strong (what's that saying, God doesn't give us anything we can't handle, I just wish he didn't trust me so much) - we will get through this.  Yep, sometimes we cry and have all different feelings... we will go through all the normal stages of grief with this, because we are grieving... we will deny, and get angry and sad and we will accept and kick cancer's ass!  Because that's what we have to do!  Come here and vent and tell us that it sucks and that you are having a bad day, or a good laugh.  We are always here to listen and support you, and lots of ladies on here are full of great wisdom (I'm not one of them, YET) - and I love all the great supportive ladies that are kind enough to care and pop back to the newbie board and post encouragement!  I can't wait until I am 5 years out, and coming back to encourage someone who is new and scared like us!! 

((((((((((((HUGS))))))))))) to everyone!!!!  Luv,  Leanna

Thanks for the website!! 

Chemo was good.  I started with Taxol and Herceptin first (weekly x 12), and the infusion was uneventful. I feel good - drinking tons of water, and have taken 2 zofrans since yesterday, but not thrown up!  May we all get through chemo with minimal SE!!!!

Sending you all hugs and blessings as most of you are starting this new journey