My First Post

belleb

Hello, I was referred to this website by one of my friends who is a member here after receiving my diagnosis 2 days ago. I'm a 35 y/o happily married mother of two and completely and utterly shaken to my core by the news that I have cancer. Is it normal to feel so hopeless and desperate at this point? I cannot stop crying and my poor family doesn't know what to do with me.

I found my lump a couple of months ago and ignored it for a while until one day I just made up my mind to get in and have it looked at. Three weeks and one excisional biopsy later, I know this: I have Invasive Ductal Carcinoma. My Nottingham Scores came back at 3, 3 and 3 (so, 9 or "high"). My tumor is 2.1 cm at its greatest dimension and unfortunately, the margins were not clear so I am facing surgery options right now. It's still so early that we haven't gotten the ER, PR and Ki-67 results back yet, so no idea what treatments are in store for me yet either. My surgeon has asked me to start really thinking about my surgical options and my gut instinct is to be extremely aggressive and have a bilateral mastectomy. I haven't made up my mind just yet, but that seems to be the way I am leaning. I have looked at some of the boards on here that weigh the options, and that information is very helpful.

The only time I have ever joined a message board in my life was when I was pregnant, and that was such a happy time. My devastation right now is beyond my own comprehension and I need to know that I WILL regain perspective and be able to feel like me again. Right now the last thing I think of before I go to sleep and the first thing I think of when I awake is the "C" word. I can't live like this! When will this strength I see so many women experiencing find me??? I don't feel like I'm strong enough to take all this. My husband tells me I am, but I don't believe him.

Hopefully first impressions AREN'T everything, or you'll likely all think I'm a nut case , but I just want to say I'm very thankful to know that there are other women experiencing similar things and willing to be supportive and help others through. I have a feeling I'm really going to need it!

Moderators

Hi Belleb, and welcome to Breastcancer.org,

We're so sorry you have to be here, but really, really happy your friend referred you and you've found us! We just know you'll find BCO to be a tremendous source of support, knowledge, and strength. You are not alone here as many of the members of this Community have felt (or are feeling) exactly how you are right now. We're all here for YOU!

(((BIG HUGS))) 

--The Mods

julieped

belleb

Your feelings and reactions are so normal.  The unknown is scary and the waiting is really hard.

I remember being in your place.  I am only 4 months out from bilateral mastectomy and things have improved tremendously.  Life will get better.

Rely on your support system - family, friends, etc.  Let them take care of you and you take care of yourself. 

Thoughts and prayers.

 

Holeinone

belleb, so, so, sorry that you have to go thru this crap at such a young age & with kids to care for. It is a difficult process, and obviously a scary journey. My surgeon was very pro-lumpectomy, so I went with that. I did know that I had one node + before surgery, then after surgery learned of many more nodes +. Have that discussion with your surgeon. I was pretty naive & too stressed to research much. I just wanted it over with...keep posting, it really helps to be able to rant & whine, to ladies that get it. Your friends are great people, but they will never understand, unless of course they are going thru the same thing...your mind is in over drive in the beginning...that slowly gets better....very slowly...

JennaJMU

belleb, I promise it does get better! I'm coming up on my anniversary of diagnosis and I shudder at the thought of the hopelessness of those early days. I did a bilateral mastectomy, chemo, radiation, and am doing a clinical trial of Herceptin for Her2 low patients. Oh and Tamoxifen. And by the way, I was 33 at diagnosis with no family history or gene mutation. Please fill us in when you get your pathology back and we will walk you through it. It's not the most fun you will have in your life but its doable! 

beacon800

So very sorry you got this bad news.  Now you are on the path to recovery and though it is very scary, you will have the strength to make it through.  This board is a fantastic place to get information, let out your concerns and gain confidence to approach the next step in recovery.

It sounds you may not have all the info you need to make a decision on surgery.  You will want to know the size of the tumor and if you are a candidate for lumpectomy.  You may also want to take a genetic test to see if you are a carrier of a BRAC1,2 mutation.  This is a good idea because of your young age at the time of diagnosis.  You'll also want to have additional work up, in the form of scans and sentinel node biopsy to make a total choice about bilateral MX or not.  That particular choice is not one you need to make right now, but can tackle once you have the clear picture of the full diagnosis.

Don't hesitate to get some antianxiety meds from your doc if you find fear is keeping you up all night and making things harder.  Many take some meds for a short while; it helps.

ziggypop

Hi belle - I don't think that there is a single woman here who would thinks you're a 'nutcase' - quite the opposite. What is nice about 'here' is that while all of us have had different experiences - some of us have had Chemo, some not, etc.. - we all have gone through some things, like waiting for biopsy results, and being told those scary words and like having the feelings that you are having right now. We have all been there. What is good about this is that we can say honestly to you (and after having been there ourselves) that you absolutely will not feel like you do right now forever, you will NOT wake up everyday with your first thought being about cancer. Most women actually start feeling 'better' once a treatment plan is in place and once treatment starts. That doesn't mean that treatment's easy or that you don't think about cancer - but rather than thinking about 'having' cancer - you can begin to think I am doing something to get rid of cancer. It's a much more proactive position to be in.

Each step of the way, you will be able to find support here and suggestions to make things easier. So here's my first suggestion, if your doc hasn't already given you a script for anxiety meds consider asking for one (not because your anxiety level is unusual for this situation, but because it is usual for this situation), also be really nice to yourself, eat all the foods that you really like, schedule a date with that lovely husband of yours and if you cry through the whole thing - that's okay, buy yourself some special treats. If your family doesn't know what to do with you, tell them to give you lots and lots of hugs. 

And please accept these (((hugs))).   

glsgls

Hi belleb,

I'm nut case #2 ----- The "C" word has / is consuming my every thought and routine.  I completely understand you.  Reading this board has helped me a lot.  I had never posted before on any discussion/chat room...........this is my 3rd post this week   I have to believe that we're going to get through this and that our lives will regain some normalcy, otherwise, I will need another tear well.  The one I have is about empty from all the crying. 

Gloria

Gardengirl66

hi Belleb, I am  so sorry to hear of what you are going through. I am also a mother of two children and a husband that keeps telling me I am strong and everything will be fine. I just had surgery,partial mastectomy,sentinel node biopsy and axillary lymph node removal,two weeks ago today.I too cried a lot,everything you are feeling is normal and healthy. I will get my results in two more days.....and that same anxiety returns...not knowing. Once you get more results back, talk to more people...it does get a little easier. I went for walks,increased veggie and fruit in my diet and lots of music and humour. One of my son's friends gave me his lightsaber ,which lights up and makes noises ,like in Starwars,so I have something to fight it with. I keep on  my bedside table,it makes me smile. I also stuck pictures up ,by the phone,in bedroom,random places of people I love, and things that make me smile.  I know you too will find the strength,it is very hard. Just remember you are not alone, waiting  and not knowing is the hardest. Oh, and one more thing that helped me ... Instead of viewing myself of having cancer...I viewed myself having a small piece (like a bullet or foreign object) that had to be removed from me.  

I will be thinking of you and your family, sending lots of love and hugs your way.

Gardengirl66

mdg

I am so sorry you had to join our club...but I am glad you have found the comfort here among the many amazing woman that "get it"! 

As far as strength...none of us are "strong", we just simply to what we HAVE to do.  None of us have a choice....it's just a survival mode we go into.  Breast cancer stinks.....I was like you.  I thought about the big "C" all day.....the worst was when I would look at my son (then 4) and think "what if I am not here to raise him???".  I spent lots of time melting down in the bathroom so he would not see my cry.  He thought I had a stomach problem for months! 

I just want to tell you that somehow it gets easier in time.  I am just past 3 years after my diagnosis now.  Life goes on.  Life seems pretty normal again.  I never forget about BC, but it does not take over my mind 24/7 anymore.  I still think about it a little each day....it is part of me now, but overall I feel good and I am happy. 

Try to have faith in the future.....I told myself it would be "one crappy year" and after that year, things started looking up.  Take it one day at a time....just know in time it will get better.  Sending hugs!!!

SheChirple

You are not alone.  First impression is - so sorry you are here and I want to give you a hug.

Everyone's experience is different. I cried for a month or more.  I cried daily from the moment of diagnosis on 10/14/2011, until I got the results of my bilateral mastectomy pathology sometime after 12/01/2011.  It was only then that I felt hope, instead of as though I had received a death sentence. So about 6 wks.  I could not think straight. I could not function, although I did.  To this day I do not know how I held my head up every day and went on.

At the time, I knew several women who had had breast cancer. Some lived.  Some died. Some had lumpectomy. Some mastectomy. Some had chemo, some had radiation, some had both.  I had no clue what I was in for.  THAT made me crazy.

I think I started to feel hope after I got my post surgery pathology.  When I made the choice to have bilateral mastectomy with immediate reconstruction, it was considered aggressive.  My pathology found only that one lump that had been already diagnosed. 

Once I knew what I faced, as far as treatment, I gained hope. I gained some sense of "I can do this".

It was, admittedly, a roller coaster even after. I had, and still have, my moments, even days, when I get angry that I'm going through this, or living with this. 

You will be amazed at your ability to handle this.  But you WILL.

wyo

belleb- so glad you have a good friend who told you there was a place you could come that was safe and people would get it.  Even if you only post once or rarely, reading the other posts lets you know you are not alone.  

You have already started taking control of your health- you got yourself to the mammo, had the biopsy and now you will make the next surgical decision once you have more info and it will be the right one for you. 

I noticed you said you noticed your lump but waited a bit to get it checked- don't let yourself play the "what-if" game on that one. I missed my mammogram for a year and did a lot of "what if" I had gone earlier etc.  I ran this by my surgeon who said you have breast cancer so the end result would be the same stop beating yourself up over getting diagnosed by doing what you needed to do- and guess what- I did stop feeling guilty. 

Crying is normal, feeling discouraged and hopeless is too but once you decide on your treatment plan and can focus on that its easier, that said I knew my tears were just a blink away every day I showed up smiling and chipper for radiation. 

 Give yourself permission to feel the gamut of emotions, give yourself permission to be unsure but most of all know you are worth all the turmoil to get the best shot at long life and happiness. 

ziggypop

wyo - "Give yourself permission to feel the gamut of emotions, give yourself permission to be unsure but most of all know you are worth all the turmoil to get the best shot at long life and happiness" 

That is lovely.

kebab

Hey belleb. I'm glad you found your way here, to the club that no one wants to join. The beginning really is the worst -- the waiting and wondering and second-guessing and not-knowing. Once you have a treatment plan in place, you will feel like you have some control again. It will come, I promise.

These boards are full of incredible women who really get it, in a way that people not in "the club" never will. You will find great support here. 

Hugs to you, my friend.

belleb

I am floored by the welcoming comments and so grateful to have a place where I can just spew all the fears and questions I have. So reassuring.

I had a horrible morning (which was right around when I first posted) but then drove an hour away to visit with my parents (who I haven't seen since getting the news) and the three of us spent the afternoon alternating between sobs and giggles. It's amazing what a good cry can do for the soul. I suppose what some of you have said is true: this part is probably the hardest. I don't know yet what hope I have since I don't have the whole picture. I don't know yet how to head in to this battle, and as a control freak, that is REALLY difficult. 

I already do take Prozac for anxiety, so maybe upping the dose is in order! Once I get the rest of my path results back I am sure I will have many more questions. Looking forward to spending more time with all of you, despite the circumstances which have brought us all here!

belleb

Thanks for telling me about this place, K!!

karody

You offer me a unique opportunity to talk to the 35 year old me a few years ago.  I say cry when you need to, but laugh about the absurdity of it all, too. Hold tight to your family because they will support you in this jouney.  Realize that hair is just "stuff" and it is as easily lost as accumulated.  Stick with your family like glue!

belleb

Thank you, Karody, I am shocked at how many people get BC young! People are coming out of the woodwork now that I've sorta let the cat out of the bag about what's going on. It makes me want to go gather all my friends and make them get mammograms NOW before they are "old enough" by the current recommendations.

placid44

Belleb,

Sorry about your news. As others have said, you will feel better when you have your pathology results and a treatment plan and doctors in place. I am a control freak, too...but my "project" ended up going pretty well.  I finished treatment in May had my final surgery at Thanksgiving.  It will be hard, but you will get through it.

I am relatively young also (44 at diagnosis, 45 now) and had an aggressive tumor, triple negative, ki67 70 percent. It is a personal decision, but I am an advocate of aggressive treatment for triple negative.  I've compiled info about diagnoses and treatment on my blog, beltwaybreastcancer.blogspot.com, with links to authoritative sites.

Best of luck and I will be looking out for your updates.

Camillia

It will get better, I promise. Extreme fear is normal at this point, you have just been traumatized. I remember feeling exhausted because of the fear and non stop thinking about my new diagnosis. I was 37 at the time and have 3 young children. I know how you feel.

I remember the first time I went to a support group, they had us write down what we were hoping to get out of these meetings. I wrote that I wanted to stop being scared. I am one and a half year post diagnosis this month and life is normal again. A new normal, of course, but I don't live in constant fear anymore. Surround yourself with lots of support and don't hesitate to use the tools that are available (support groups, one on one counseling- it was offered free at my hospital).

Give it time and don't be afraid of the feelings. They need to come out before you can feel better. You can do this.... your husband is right. You are strong and you will come out of this even stronger.

momand2kids

Hi

I am over 5 years out and really , it does get better.  Right now you are focused on all that you have to do, but at some point, all you will have to do is have a regular oncology appointment twice a year, take the meds and live your life.  I found it took me up until year 2 to really relax.  I like to think my life is an even better place than it was.... and I think it is.  Come here often, it will help you immensely.... it still helps me when I have questions or concerns or any anxieties (which I don't have very often).  It WILL get better.....

Jackeek

Hi

This is my first post.  I was quite happy when I discovered this site.  I believe I will get much help here.

I am in my late forties.  Being diagnosed with stage 1 breast cancer was devastating. Especially since I had no risk factors. I believed I did all the right things. But anyway here is my story.  Had a lumpectomy three months ago and then the left mastectomy two weeks ago. Dx was ER+ and PR+ . Lymph nodes all negative.  My surgeon says tamoxifen should be fine for me but I should also considers chemo. I dont want to hear of chemo especially after he explained that only 5% of women on tamoxifen and chemo actually get any benefits from chemo.  After having gone through with the mastectomy I wonder whether i have to put myself through this.  

Apparently there is this test; oncotype dx that can be done to quantitatively predict the likelihood of chemotherapy benefit as well as recurrance in early stage breast cancer.  I am leaning towards taking a leap of faith  by going for tamoxifen without chemo.  I trust God.

Thank you all and hope you all are dealing with this in the best possible way.

Jenwith4kids

belleb, I'm right there with you...routine mammo less than ten days ago, us, MRI and three biopsies later...clinical stage 1, pathology on first biopsy confirmed IDC moderately differentiated - grade 2 - ER+,PR+,HER-, with a low rate of growth, still waiting on lymph node biopsy - us showed thickened cortex on at least two nodes- and a biopsy of another lesion on the other breast (I think the radiologist said it is likely nothing).  I am waiting to talk to the doc tomorrow for next steps - planning a bilateral mastectomy, I don't ever want to deal with this again.  I am 46, I have four kids and no immediate family history of BC.  Reading these boards, which I have been doing almost incessantly, has helped and I believe everyone when they say that the diagnostic phase is the worst - especially for a type A like me!

Maybe we can go through this nightmare together!

mdnghtdeb3

Hi, Belleb! I just finished reading your post and feel as if I almost wrote it myself with only a few exceptions. I, too, was just diagnosed with BC two weeks ago, and I feel as if my world is spinning out of control. Every time I think I am okay...the tears begin to flow. I can't seem to wrap my head around what is happening to me. I am scheduled to have a double lumpectomy this week with SNB. I also have to have the wire placement...I am terrified of needles and if this is anything at all like my biopsy...oh my! Even the thought of the lidocaine injections are sending shivers right through me. 

I have never joined a discussion board, so please forgive me if I make a few mistakes here. For some reason this morning is bad! I hate that I don't feel like me anymore. I am so scared and not sure where to turn. 

belleb

Hi Mdnghtdeb! I bet once you are through the surgery you will be able to find some peace in the whole process, at least that's how it worked with me. I was out of my mind terrified, overcome with fears of dying, scared to look anyone in the face for the first week or two, but something about having the surgery out of the way and a plan in place really brings some clarity to the situation. I had the lidocaine injections in my areola before the sentinel node dye was injected and I was SOOOOOO scared!! I'm here to tell you, though, that it wasn't even a fraction as bad as I was expecting it to be. They did put emla cream (lidocaine cream) on an hour before the procedure AND gave me a xanax to calm my anxiety, and it helped a great deal. You might want to ask if they can do that before the wire procedure? And definitely ask for some xanax if you are really stressing. It really, really helped me just chill out and not be (as) irrational.

mdnghtdeb3

Hi Belleb! Thank you so much for responding to me so quickly. I hope you are right and I am able to find some peace after surgery. This emotional roller coaster is exhausting. Also, thank you for easing my mind about the injections. I will ask about the cream and the xanax. I know, for me, the biopsy was long and painful (3 1/2) hours. They had trouble getting what the needed as far as tissue samples and my left breast was one big bruise. The pain of the injections for that are still quite vivid and the idea of going through that again...let's just say it brings more tears to my eyes! 

I just wish I could have surgery and be done, but that is not the case. It's the waiting game, like so many others here have mentioned, that is causing even more stress. The bottom line...all of this scares me to death and I am hoping my peace with it comes sooner then later. Thank you again for your kind words and help!!!