Just Diagnosed - Not Emotionally ready

rdeesides

Well, the doctor just called to confirm that I do indeed have "a carcinoma" as he put it. He doesn't have the full pathology report yet but wanted to let me know and he will get the report to me as soon as he has it, hopefully later today or tomorrow. I'm so glad I found this board because it has helped put my mind at ease somewhat, but I'm just heartbroken. I have a 9 year old. I need to be here at least 15 more years. And I'm blaming myself because I wasn't living a healthy lifestyle... not working out and drinking too much (I like my wine). So many should haves and could haves. I'm not going to linger on it but try to be strong and move forward. As soon as I have the pathology I will post in hopes someone can give me insight on anything else I should educate myself on.

R

KSteve

rdeesides - You are definitely in the hardest, darkest part of this journey you're about to go on. First of all, don't go blaming yourself. As you will find, there are plenty of women on this board that never drink alcohol, exercise everyday, and eat healthy, but yet, they find themselves here as well. So please stop beating yourself up. Unfortunately I do know it's part of the journey too. You will begin to feel more in control once you have more information, have your medical team and treatments in place, etc. At this point, just breathe and know that we're all here for you and have been there ourselves. Please keep us posted along the way. Take it one day at a time!

Hugs,

Kathy

Nancy2581

Exactly what Kathy said. It's a crap shoot as to who gets BC and unfortunately we drew the short straw. I'm sorry you find yourself here. As Kathy mentioned the beginning is the absolute worst. I felt like a deer in headlights. I was a mess for a couple of months. If you think it might help ask for some anti anxiety meds. My onc gave them to me before I even asked. They helped. I also started taking lexapro just to calm down. I still take the lexapro. Hang in there - I promise as you find out more each day will get better.

Nancy

MTwoman

I agree with KSteve and Nancy, the knowing you have bc, but not knowing anything else but that is just the absolute pits! If you don't hear more details (or even if you do) try to use plenty of distraction this weekend, deep clean something, binge watch something on Netflix with your child, go on a long walk, or cook/bake a complicated recipe that demands your attention. Just distract yourself from dwelling on unknown things. Also try relaxation, warm bath, soothing music, aromatherapy oils/candle, yoga, breathing, meditation, prayer (whatever sounds good or you know works). These tools will be helpful to you off and on during your journey. Being able to rest your mind from 24-7 bc will give some relief and may help you be able to focus on all of the information that will be coming your way over the next days/weeks/months.

You can do this! You've already got an amazing resource in these boards. Whatever your diagnosis, someone here has likely shared it. Do make sure you're getting good sleep as you won't be as good at taking in and processing information or making decisions without it. Do not hesitate to ask for something from your doc if you need it.

Sending you warm wishes and gentle ((hugs))

lrwells50

I'm sorry you have to join us on this journey, but this board has been incredibly helpful. One thing you might consider is taking someone with you to your doctor's appointments. I found that I only retained maybe 50% of what the doctor said. In my case, after the first appointment with the BS, I knew that my husband wasn't the one to take with me. There were things I should have asked that he didn't think of either. Medical info goes in one of his ears and out the other. A friend went with me to all of the MO appointments until I decided to do chemo, then DH has taken me to the infusions.

MinusTwo

DO NOT ever blame yourself. When you get a minute, go to My Profile and start entering your diagnosis & treatment plan. You can add as time goes on but it helps us to respond.

Also, it would be useful if you picked one thread to continue posting your story on that one. The more we know about you, the more help we can offer - but going back to research lots of different threads is usually time prohibitive.

And last - I have friends who are 25 & 30 years NED. Although there is no cure, it doesn't mean you won't have a good life.

farmerlucy

I remember those dark days. I had a bad case of tumor envy back then. I was so jealous of the ladies on this board who were two, three, xx years out. I figured I would die soon, so I may as well save my family the suffering and just take care of things. From the moment we hear the words most of us oscillate between being a noodle and being a wacko. I was a wacko noodle. Someone on these boards told me about breast cancer radio. In the beginning it blares in your head 24/7. It is all you hear and all you think of. As time goes on you still hear it but it gets mixed into the rest of your life. Nancy's suggestion for meds is spot on. Anxiety meds were made for times like these. I'm in my sixth year and I still take an antidepressant and I LOVE it.

Oh and blaming yourself - pfft. We all do, but it does no good. It IS a crap shoot.

So glad you found us. Be sure to join a surgery or chemo group. This is a safe place. We get it. Big hug!

EastcoastTS

Agree with all and can add:

• I also have a 9 year old
• Also LOVED my wine and craft beer

Don't blame yourself!

I am just getting out of the fog and will tell you that it DOES get better. Once you have a plan in place and start moving forward -- and you learn -- it gets better. I was diagnosed in Jan and really, maybe March/April, things starting looking up. Now my new normal is, well, almost normal.

HUGS to you.

rdeesides

Thank you everyone for your kind thoughts and words.

Kathy, your post is reassuring and I should have more of my medical team pulled together next week. Already have the surgeon and I love her. Getting the MO will make me feel so much better too.

Nancy, thank God for anti anxiety medicine. I asked my Dr. for some a week ago and I have never slept better. I honestly have probably needed it for a long time, even without the BC diagnosis.

MTWoman, I think I'll try some yoga today. Have been thinking about trying to get into it for a long time but just haven't made time. Now seems like a good time to try it out.

Irwells50, this is going to require some thought. I dont think my husband has a clear head in a crisis. I am the one that handles crisis situations, but you are right, I'm worried the doctor is going to sound like the teacher in Peanuts.... wwwaah wah wwah wasah. wwah. I just moved to San Diego 9 months ago. I have a few acquaintances but no real friends here. But times like these tend to bring out the best in (some) people so I think I may be able to figure something out.

MinusTwo, as soon as I have my stats I will update them. I'm dying to know what section of "the club" I belong in. I feel like Harry Potter waiting for the sorting hat to tell him which house he belongs to. (sorry for the Harry Potter reference if you are not a fan. I have a 9 yo and we are reading the book right now). Also, as for keeping my own thread, how does that work? Should I keep posting here? Or start a new one and then always post there? I really really am going to fight to be 25 years NED.

farmerlucy, First, I spent MANY happy days of my life on a farm in Oklahoma. I was raised in TX but my mother's side is from Oklahoma. We had a big TX-OU rivalry going on. :-). I dont think they will let me stay on the Xanax a long time will they? I love it so much! I have had anxiety probably my whole life but have never taken anything. This has been amazing. Well, even if I can't do Xanax permanently I will find something else that works. Probably should have done it years ago.

EastCoastTS, thank you for the hope. You aren't so far out yet are doing well. That is awesome! I will hope for the same. How have you talked to your 9yo and how did he/she handle the Mx? My daughter knows I have a lump and that a doctor needs to take it out. That's all I know at this point so that is all she knows. She wants to meet the surgeon. I guess a real person instead of just a name may be reassuring. I havent used the word ancer and I don't know if I will. Maybe eventually. We have a close friend that has had 3 fibroadenomas removed so I told my daughter see, Auntie had surgery and she is fine. Of course if I have a mastectomy it will be different. I am just going to slow... bit by bit and stay positive.

Again, thank you all so much. I wish I could hug you!

R

Chantilly

I was just diagnosed on June 7th, 2017and since that day, was sent on a number of different tests. This is the time that you are most vulnerable because there are so many more unanswered questions: CT scan, bone scan, MRI, genetic testing, etc. and no answers until you meet with your Medical Oncologist.

During that meeting, I was so focused on what he was saying and what I had to do to kick BC's ass. Though it will a long road ahead for me at least I have a plan I can follow. I have three young children and understand your worries during this time of grey and gloom. My Dr. is very optimistic that I will beat this. The BS told me that it is one year of difficulties for 50 more years with your loved ones.

ER+, PR+ and HER2+ makes for a long road ahead for me.

Hang in there and do things that keep your mind occupied. You are entitled to cry and worry, but you need a strong head to deal with everything that will be thrown your way.

Spencer39

I was also diagnosed recently; June 5th to be exact  - with DCIS. Things move so quickly. I've already had a lumpectomy, and found out I need to either have another lumpectomy with radiation and hormone blocker for 5 years, or I can go straight for the big guns and get a mastectomy.  Emotions run high, and I have also been wondering if I did anything to cause this with my lifestyle.  I have young children as well. I think we just take it one day at a time, and ultimately know that even though it doesn't feel like it, we can consider ourselves some of the lucky ones. I hope your pathology is favorable, and I send you positive, healing vibes.

MinusTwo

IT IS NOT YOUR FAULT. Ditch that thinking and you'll do a lot better. Good luck with your decision,

kira1234

Spencer39 by big guns I'm assuming you mean mastectomy. Even if you decide to go that route they'll recommend hormone blockers. No one should ever feel we've done something cause this.

MTwoman

kira, well, I ended up having mx for dcis (multifocal) and didn't have hormone blockers as I was er/pr - , so Spencer39's receptor status should dictate whether she gets meds after the "big guns"

rdeesides

Hi everyone,

I got the pathology report today and it was (as I am learning many things are) not as I expected. I really was hoping to know the ER/PR/HER status, but it doesn't seem like it says anything about it. Here is what it says:

GATA-3 is positive. ER/PR/HER-2NEU have been ordered and the results will be reported as an addendum. Breast Biopsy Synoptic: Tubule Formation: 3/3. Nuclear Grade: 3/3. Mitotic Activity: 2/3. Modified Bloom Richardson Score: 3+3+2=8/9. Invasive Tumor Size: 2 cm longest contiguous involvement (tumor involves 15/15 tissue fragments). Lymphatic/Vacular invasion: not identified. Breast Prognostic Panel: Pending

So what does this mean? Grade 3 I understand... It is more aggressive. Sounds like a score whatever it is of 8/9 means aggressive. I'm scared to google anything. Would love anyone that understands to step in and tell me where I can get info or explain.

Thanks!

Rebekah

kira1234

At this point you don't know much. You're grade is 3 but no lymphatic /vascular involved. That's good. That's about all you know but it appears to be tubular.

Spookiesmom

Dr Google is NOT your friend. Wait for your dr to explain it all, and your future course of treatment.

ParisParis

Kira, I am not sure how you arrive at the idea that rdeesside's cancer is tubular? I am pretty sure it is not. Tubular cancer tends to be grade 1 and slow growing. The "Tubule Formation: 3/3" is part of the grading and says that the cells are not well differentiated, meaning they do not look and behave like normal cells.

MTwoman

rdeesides, receiving your initial pathology in stages is pretty typical (unless you're at a large treatment center). Many labs do not do some of the specialty testing in-house (like receptor or HER2 expression). Whatever they send out takes longer; and is then reported as an addendum. Mitotic activity refers to the rate of cell division, which is moderate (2/3), you understand the grade. I would also recommend talking to your doc about the significance of each as it pertains to your treatment options. Don't google. If you want to look at these characteristics, try this thread on this site (https://community.breastcancer.org/forum/5/topics/547585) or other reputable sites. Here is "understanding your pathology report" from cancer.org:

https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html

ParisParis

I would also like to add my two cents to the "cure" discussion going on a bit earlier on this board.

Of course breast cancer is curable. The numbers peddled differ a bit, but around 70 - 80% of women will be cured, meaning they will not move on to stage 4 and die of this breast cancer (They could have a new primary, of course). The problem is that we have no way of saying with any certainty who the lucky ones will be. So the problem is not that there is no cure but that we lack the necessary knowledge and technology to be able to tell anyone with certainty that they are cured. Obviously that is a very unsettling state of affairs. My surgeon told me that I had excellent chances of being cured, but he did not state that I was cured, and I liked the way he put it.

rdeesides

Again, thank you everyone so much!

It's so weird being diagnosed with cancer. I got the pathology report right as my family was getting ready to head out the door to go to the local Farmer's Market. Husband was rushing everyone out the door and my head was spinning... trying to act perfectly normal in front of my daughter and step-daughter, but also trying to digest what I had just read. In my haste I missed the portion of the report that was the diagnosis: Invasive Mammary Carcinoma with Medullary Features.

I doubt they can confirm that this is indeed Medullary at this point, but it sounds like there is some reason to believe it. So THAT'S interesting.

We'll see what the BS says. I have an appointment on Wednesday. Will keep you all posted.

I really, really appreciate you ALL.

Rebekah

MTwoman

rdeesides, if it IS medullary, bc.org has this to say: http://www.breastcancer.org/symptoms/types/medullary

Good luck on Wednesday! and don't forget to bring someone (who keeps a calm head and can write quickly) to take notes for you or get permission to tape your appointment. So much info and it is pretty common not to be able to retain it all. You may want to review the info at a later date.

((hugs))