Just Diagnosed & Brain Numb

Melrosemelrose

Had a breast cyst aspirated a year ago on left breast.  Had mammo & ultrasound which confirmed the cyst diagnosis   On Feb. 8, 2012, I had mammo and ultrasound on the same area since it appeared the cyst was growing.  On Feb. 9, the breast cyst was aspirated again. On Feb. 15, I had a lumpectomy to remove the cyst.  On Feb. 17th, I got the unwanted news by phone that the cyst lining showed cancer cells, not a clear margin and will probably need to have more surgery to check to see that the doctor got everything.  Have an appointment with the surgeon in 10 days to get a more details.  My brain went numb when I received the phone call and probably didn't hear everything the doctor was saying.  I'm trying to stay positive as I make my journey through this.    

Kadia

I'm so sorry for what you are going through. It is a lot to take in. I think many of us have brain freeze when we get our dx. It might be good to write down questions forthenext visit, and maybe have someone with youto take notes. It seems like many people feel less frozen once a treatment plan is in place.



You have come to a good place here for support, information, inspiration and encouragement.

Melrosemelrose

Thanks for your words.  Since this adventure is just beginning, I can certainly use all of the support, information and support that is available.  

Makratz

I agree,  you will feel better once a treatment plan is in place.  I found it helpful to bring someone with me to take notes and really 'hear' what the doctors were saying.  I think we are in so much shock that we miss alot.  I'm glad you found these boards, they will help you get through this!

xoxo

Melrosemelrose

Thanks    Fortunately for me, my huaband has been accompanying me to the doc appts/tests.  I definitely will prepare for my next visit so I can hear and digest what is being said to me.

Makratz

gLAD HE IS THERE TO HELP YOU.  MY HUSBAND WENT WITH ME FOR EVERYTHING AND IT REALLY HELPED ALOT.  Soory for the caps!

Melrosemelrose

Me, too!!!!  Haven't shared everything with my two kids (21 yrs daughter & 18 yrs son) just yet.  They both know I had the lumpectomy but not the outcome of the cyst analysis.

Makratz

You need to tell them when you feel comfortable with it.  I was dx when my kids were 9 and 12.  I told them immediately because we all lived together and I kept crying.  I wanted them to know what was wrong with me.  I found strength in telling them.  I put a positive spin on it for them,, and then I made myself believe it.

Melrosemelrose

Knowing me, I will tell them before my next doc appt.  My daughter is attending an out of state college  in NJ which means a not fun telephone call.  My son is a senior in high school.  This won't be easy but very necessary. 

Makratz

I feel for you!  Good luck with the conversations.

XOXO

DebbieOS

Hi Melrose,

I was diagnosed 2 mos. ago..have surgery for MX in 6 days.  Told my kids (21 yr old daughter and 22 year old son) immediately, but gently...with a confident "the doctors got it early...I'm lucky because it was caught so soon...I'll be fine ultimately, but kind of scared in the interim, etc."  They seem to be doing fine with it...my daughter cried at first (as my mom died from this), but I reiterated that mine is completely different from my mom's (again...caught early, etc.)    Anyway, good luck with everything!  Keep us informed...

Melrosemelrose

I'm hoping for the best--- that it was caught early and that it was contained in the cyst.  The weird thing about all of this is that I had a funny feeling a year ago about that cyst and despite the mammo and diagnostic ultrasound apiration, I am where I thought I may be.  Thanks for the words.  I don't feel so alone .....

Racy

Melrosemelrose, I am very concerned that you have to wait 10 days for further information. That is a long time for your mind to have to cope with all the uncertainty.



Was it your primary doctor who told you the biopsy result? May I suggest you ask for a copy of the report and/or an appointment with your primary doctor to discuss the report. That is what I would do in your situation as I would go crazy thinking of all the possibilities with no detailed information of the diagnosis.

There is also authoritative information on this site to help you understand your pathology report.

Melrosemelrose

I had already planned to call to get pathology report on Monday from the oncology surgeon.  I'm also arranging to get a second opinion.   Not waiting for the surgeon to return!!!!  Thanks for responding to my post.  It helps..... in fact.... it all helps 

bgirl

I agree - 10 days a long time.  I found out Thursday from my doc about biopsy results, called Friday with referal to surgeon for Monday morning at 9.  My doc also said if I was having trouble coping or sleeping to call her and she would prescribe something to help get through.  Didn't end up using it, but nice to know that I could.  If you need help ask - many do!

As for kid, my youngest 17 knew from biopsy - not something I could hide.  Oldest, 21, had a Fall reading week, did not tell about biopsy, but told results when I got at end of week - wanted to do in person as she is 5 hours away.  Middle daughter 20, had to tell on phone, waiting for preop MRI(they could call any time) was not fun.  She cancelled her weekend plans and turned up on the doorstep on the Friday.  But they all survived and are coping fairly well.  Been honest and tried to give them the amount of info they want.  (each one is different)

A plan helps and definitely do not go alone. Take someone - and a notebook.  Know others understand and are willing to listen.

Melrosemelrose

I'm hoping that my kids are as strong as yours.  I don't plan on going to any of my appts without someone--- my husband plans to be wherever those appts are.  I know that I am not travelling alone down this path and it helps to know that there are others before me who have travelled this path and can share and give me their knowledge.  Thanks

1openheart

Sorry to hear you are going through this, but glad that you have such awesome support in place. Even though I had my husband with me at all of my appointments, we took a small voice activated recorder to all of our visits.  It was great to be able to go back and listen to the conversations again. I always asked first if the doctors were OK with us recording our conversations and they all were.

I think telling my son, who was 27 at the time, was the hardest person to tell.  Luckily, he happened to be in town that weekend, so I could tell him face to face and he could see that I was OK.  Of course, I downplayed how worried I really was.  I'm not really sure that I fooled him much!

I see you are in Houston.  Lots of good doctors there.  I have heard wonderful things about the Baylor Breast Cancer center.  It is not as much of a "factory" as MDA.   I had a consult there.

Like everyone else has said, these early days are the hardest.  Once you get all of your path. reports etc..., talk to doctors and get a plan in place, you will start to feel more in control.  Hang in there.  You have lots of cyber hugs and energy flowing your way. 

bgirl

Found it best to just keep loving them, stay interested in what is going on in their lives (try not to be all cancer all the time, hard in the beginning) and give them the chance to show what wonderful children you have raised.

On a practical note I did contact my daughter's guidance counsellor so I knew she had someone to turn to.  Then I left it up to her to decide who she wanted to tell.  Being different in high school is often hard.

Melrosemelrose

Trying to maintain my composure and get through this time.  I've reached out to my family and friends and to this community.  I am truly grateful for the words of encouragement and support. 

jemije5559

Hello Melrose. I was diagnosed 2 weeks ago. It is a shocking, upsetting time. Much of the upset, I think, is not knowing. If we were given a diagnosis, information about the diagnosis, and options for treatment, it would feel more in control. But this is a disease that unfolds bit by bit, and it takes time before you will really know the details you need to know to make decisions. That is stressful and frustrating. One of the most useful things someone said to me on this site, was that after about a month, it starts to settle down, because by then you know more and have started treatment/surgery, etc. I found that the longer I put off telling my daughters and family, friends, the harder it was. I found relief at having told them. I'm still in the place of information unfolding--waiting for surgery, the pathology report from surgery, the MRI report and such. All unknowns that could change things. The treatments are determined based on these results too. There are many of us out there and your tears and fears are shared. I'm right there with you. Please keep writing and do not feel alone or crazy if you find yourself crying or unable to sleep. Anytime you can take action and get some control back, it will help. You are a strong sister--hugs. Jenelle

Melrosemelrose

Hi Jenelle,

Glad you reached out to me.  Need all of the buddies I can get right now.  I'm getting my info notebook together and just got a calendar to keep track of appts.  Yes, I started a journal today to help me sort out my fears and thoughts.  Both of my kids now know what is happening to me.  It wasn't easy to tell my 21 yr old daughter via telephone that I have BC but at this point, I have doing all I can do to move the process forward and maintain some sense of self and sanity.  HUGS to you!!!!! Melrose

Racy

Melrosemelrose, your kids will probably feel less worried if you are able to be optimistic with the information you share with them. That's another reason it would be useful for you to get more information asap, hopefully information that will indicate a good prognosis and lots of treatment options.



You mentioned in your original post that the doc gave you some info over the phone. Call that doc back and explain that you didn't hear everything he said and ask him to repeat it, this time with you taking notes.

deborye

I request all my reports from Mammo call back, ultra sound, CT, MRI, Bone scan, X-rays and bloodwork. Pathology reports and all blood test resuls and also all doctors comments, from then until now. Also all BS's comments during surgery.  Then I started keeping a journal and requesting results of blood work and doctors comments on follow ups.  I have a 3 ring binder notebook filled now I have to get a bigger one.  I have my journal/diary in my documents.

My DD was in her early 30's when I was dx, Dh and DD came with me for my first surgery 2 weeks later I had to go back to get clearer margins because of the DCIS which did not show up on mam but was noted in path report.  

Cats134

(((Melrosemelrose)))

Its a scary time but you'll find lots of info, encouragement and support here.  I  know its hard but try not to google everything and end up scaring the beejeebees out of yourself.  

When I first started my journey, I started a binder, divided it into different sections: general info on me (name, address, names and numbers of my current doctors and added a page where I taped all my new doctors' business cards, list of medications I was taking, emergency contact info), a Notes section that contained huge amount of lined paper to write down everything (and I mean everything, when I called a doctor's office, what time, who I spoke with, what was said, sections for each test/biopsy I had which contained both the radiologist's report plus the path report, a section for insurance reports/bills, a monthly calendar I printed out to keep track of all my appointments, and an empty folder to stick in all the miscellaneous papers you seem to gather.

I carried that binder with me everywhere and depended so much on it.  My hubby knew exactly where it was and where to find info and my BS would take it from me from time to time to re-read my notes or clarify what he said. 

Don't be afraid to ask questions or ask your BS to repeat him/herself until you understand it. 

Gentle hugs,

Cats 

deborye

This place is the best place to come for support and comfort, as you can see, I have been here and in chat since 2007.

You will feel better when you know more don't be afraid to call your doctor and make sure they are all on the same page/team with you.

(((HUGS)))) 

Melrosemelrose

So glad I came to this place to find some comfort and support.  Yep, I am scared and don't have all of the information yet.  I spoke with an oncologist friend whose words were a little comforting.  Thanks for the help with the journal/notebook.  At least I can control that right now and feel that I am making positive steps with my journey.        

pminxy

Dear Melrose Melrose it sounds like you really got hit hard and you truly are numbed by the diagnosis and it is like you shut down though life goes on around you and it is a horrific time, I am glad you came here to the gang for they are an amazing bunch of people who having walked in their own individual way in your shoes they know where you are at and it is a hard place but remember you will get past that once the shock settles along with the dust and take aboard the ideads offered, always to if in doubt about something said ask about it; bring questions to your specialists appointments and get the answers written down so you can mull over them at home because while you are in a medical place you are tense , not able to think straight or really take somethings in well and they may be things that can really help how you cope or decisions you must make if you have it at home you can think clearly in your own nest where it is your space/that of your loved ones!

If you aren't happy with your doctors answers  etc ask for a second opinion or what ever it takes to bring you some peace of mind for while there are many great doctors out there there are those who couldn't give a fig about how some patients feel and what they are enduring so it is really imporatant for you to find that balance and knowledge base that can help you handle your cancer journey the best for you, and as I said before the amazing people here will do what they can as will I so please let us know how you go and remember the gang here is only a key board away!

Live love and laugh well as you can and may many good things come your way.

Cheers

Melrosemelrose

Sun is out so it is a good day.  Taking one day at a time, one step at a time and moving forward.  Thanks goodness the support here is only one click away.  I know one thing for sure that the BC isn't taking away my mind and my soul---- just parts of my physical being.  I will regain my peace of mind one day.  That process has already begun thanks to the family and friends and the strong women I'm connecting with here. 

catbill

I want to suggest that "Skype" might be a way to contact your out of town daughter with a video phone call.  Skype is free and you can sign up on line.  you daughter will need to sign up as well, but if this can be arranged, you can tlalk face-to face.  Best of luck as you begin your journey.  I;m glad you found us.

Melrosemelrose

Thanks for the suggestion!!!!!!.  I already have it but since I'm having a "duh" moment, just forgot about it.  Glad I did find my way here.......

Godlistens

Take a deep breath - you WILL get through this.  My diagnosis was almost 5 years ago and I am doing fine.  Try not to panic - do your homework.  Read and ask a lot of questions.  Get to know the type of BC that you have - there are many varieties! When you go for your appointments, bring someone with you.  I brought my husband along, and he took great notes.  HE even remembered things that the surgeon said that I completely forgot because I was in such a daze.  You will feel very alone at times as the world spins around you and goes on while you are dealing with this diagnosis. YOu will feel anxious - this is all OK!! Try to go about your daily life as opposed to waiting for doctors to call you back..they take their time!  YOu cannot move the very slow medical system so just learn to wait patiently while you are making all of your plans.  Try to keep a steady mind...try to make the best decisions for yourself. Listen to others opinions but make your own decision - only YOU know what you can live with and what will keep you up at night.  I found tremendous comfort in these message boards, as well as a lot of very useful information....and COMPASSION!!  THese women know more than the doctors.  Please keep us posted on your progress....I AM ROOTING FOR YOU!!!!!  Hugs......may God be by your side.  He was right by my side every step of the way.