Newly Diagnosed - Words of Wisdom?

Pines

I am 39 and have 5 kids (ages 5-14), no family history of breast cancer.  Breast cancer never even really crossed my mind until I felt a lump, and even then I didn't take it that seriously until I got the call that it was abnormal.  I have been reading all that I can on this site since I was first referred for a biopsy and am amazed at the wealth of information and support. 

I got my biopsy results yesterday.  I have IDC right breast:  1.5mm with numerous surrounding DCIS.  IDC is 2cm from ribcage, but MRI confirmed it is not in my chest wall.  ER 80% (positive), PR >90% (positive), Her2/neu negative, p53 negative and Ki-67 30% (high).  The grade is II/III (I'm not sure what this means - is it grade 2 out of 3 or borderline 2/3?).  I have not yet had surgery, so I don't know my stage, but I have swollen lymph nodes in groin area on right side and intermittent pain in both armpits.  First surgeon recommended bilateral mastectomy although left breast is clear.  He said that I won't have much native breast tissue left if I opt for a lumpectomy.  I have a second opinion next Tuesday and am hoping for surgery soon.

I am most concerned in that I don't know how fast this will progress and I'm not sure about the grade and the Ki-67 high significance

 Any words of wisdom would be wonderful!

dlb823

Hi, Shay ~  I'm so sorry that you're joining this club of ours that no one ever wants to join, but I'm glad that you've found us, and I'll try to answer at least one or two of your questions.

First, I have to say that it sounds like you already have a very good grasp of bc lingo -- far more than most just-diagnosed women.  As far as being Grade ll/lll, I think that means that you will be one or the other when they do the pathology from your surgery.  For now, from the tissue they got, they're saying it's in the 2 to 3 range re. how much the cells have mutated or changed from normal cells.  They'll label it definitively when they can look at more of the entire lesion.  Evidently what they got wasn't quite conclusive.

As far as the higher Ki-67, I was just reading something today that said that highly positive ER, which you have, and which is good, probably trumps or overrides the higher Ki-67 in terms of the risk of recurrence.  But I wouldn't worry about that too much now, as it too could change some with your final pathology.

Hope this helps a bit.  Stay with us -- we're all here for you.   Deanna

Alyad

ShayT, so sorry that you have to join us here- but you have come to a great place! You have been diagnosed with a very treatable form of BC. My diagnosis (dx)- BTW there is a whole list of abbreviations commonly used here that sometimes are confusing at first. anyway my dx is almost identical to yours. Only I'm ER 99%, PR 54%, HER2 -. I don't know my p53- but my ki67 was 76%. Mine was also listed as grade 2/3 on the initial pathology and I took it to mean borderline between 2 and 3, tho the grades do only go up to 3. Everywhere else I am listed as grade 2. I am 35.

Did you mean 1.5 cm, not mm? of just a small spot of IDC within a bunch of DCIS? 

It sounds like you are doing a lot of research- everyone approaches this a little differently- I  do a lot of research and like a lot of info- some folks get too overwhelmed.

 I think the biggest piece of advice I can offer you at this point is to slow down and take a deep breath- don't get rushed into surgery and other decisions right away. A few more weeks to consider your options won't hurt. I know the gut feeling is to get this thing out of you ASAP, but masectomy vs lumpectomy is a big decision. bilateral vs unilateral also a big one. I opted for a unilateral masectomy- mostly due to my tumor location, the nipple was going to have to go too. getting a second opinion (and third if needed) is a good idea.

my high ki67 number scared me but I didn't really understand what it meant til doing more research. I've found the docs look at it- but in prognosis a lot more weight is given to overall grade and presence/absence of positive nodes.

You may or may not have something going on with  your nodes- I had a big swollen node on my neck that showed up a couple months before I noticed the lump- it was removed and biopsied and was benign.

I have done a lot of research- I could go on about this, that and the other thing, but I will stop- please feel free to PM (private message) me if you have any questions.

Alyad/Dayla

lexislove

The beginning is the worst.Waiting for info, exam results ect. It's scary.But once you have YOUR treatment plan in place, things are better.

My words of wisdom:

No BC is the same, try not to compare youself to other woman who seem to have the same diagnosis

Stay away from the internet, lots of info is outdated or does not come from a reputable source

Be kind to yourself and rest during your treatment! You need to fight this disease, now is the time to focus on YOU.

Ask for help if need be. Friends,family,neighbors to help with babysitting,meals,erands, ect....

Last, when you are feeling down / depressed...remember that all the treatment that you are receiving is temporary.

Poppy

Hi Shay, I was just barely 36 (like I got my diagnosis for my birthday!) 4 years ago in May. Our diagnoses sound very similar. Even though I was scared, I never thought twice about a bilateral mast w/ immediate reconstruction. I had to do chemo, but no radiation. I remember my plastic surgeon telling me it was going to be a year of hell, and it was just about that long. It wasn't "hell" for me though, if you have to do chemo there are amazing drugs to counter a lot of the side effects. I never had nausea, just slept for 2-4 days each time. Other than the hair loss, and being terrified, life was pretty normal. Some of the decisions will be made for you and others you will have to think over. I had so much DCIS that lumpectomy wasn't an option so that made the bilateral an easier choice. Just do what is best and what will give you the best chance of beating this!! There are a lot of us who are doing fine *knock wood* several years out. It's scary but you CAN do it!! xo

Erica

hollyann

Shay welcome to the club no one wants to join........Just wanted to say sorry you have to join us......I have no words of wisdom at the moment...I am usually sleeping at this time but having problems sleeping right now.........Just want to send gentle hugs your way and let you know we are all here for you.........Sounds like you are between a grade 2 and 3......And 1.5 cm is pretty small..Mine was 1.6 cm but grade 1............I wish you much luck, Shay and please keep us updated.........

Regawhatever

I'm kind of new at this myself and just wanted to say what I wish I knew at your stage in the game: it won't always be this scary. The more you know about your situation and the more control you have over your choices, the less you'll wake up with complete fear, the less you'll cry, get ulcers waiting for test results, etc. You're in the hardest part now. It will get better soon. Just remember -- we're women. We're strong and healty and you are in one of the most medically advanced countries in the world. You will kick this. Good luck!

-Tricia

nelia48

Shay, I'm not real good with all the technical stuff, but you have definitely found the right place, as all these gals are so helpful and explain things much better than the doctors do.  This is a great place to be!

I know how scared you must be, and the future looks all clouded up and foggy for you right now.  But believe me, if I can do it, you can do it.  I'm 61, let my cancer go for 7 years before getting treatment, but I made it through all the chemo, surgery, and radiation.  Found a lump a couple of weeks ago which made me panic, but the scans came back clean.  So here I am, a year later, breathing, smiling, and getting on with my life.   This is not a pleasant journey.  You may feel like road kill at times.  But it IS doable!  Keep your eye on the goal, take big breaths and little steps.  You WILL make it through!

thenewme

Hi Shay,

I'm also 39 and also have kids from 5-14 (but I only have 3!).  I agree with the others- you're in the hardest stage.  I've found the mental games to be worse than the physical symptoms so far, and the beginning was the worst.  Before you know it, you'll look back and be amazed how far you've made it, past all the stuff you didn't think you could handle at the time.  Although I do way more reading here than posting, the women here on these boards have held me up so often when I've felt confused, angry, overwhelmed,in pain, sick as a dog, whatever.  This place is such a blessing for information, inspiration, and commiseration.  Welcome, and best of luck!

Pines

Thank you everyone for your welcoming and for all of your words of support - and for helping me put some of the technical details into perspective.  My family is very supportive, but it is extremely comforting to have people out there who understand what I am going through. 

Alyad/Dayla, I did mean to say 1.5cm.  Thank you for all of the information!

 - Shay