I thought we were through the hard part.

nicmid

My mom was diagnosed with ILC about 2 months ago.  She had test after test and a mastectomy on Sept 9, 2011. They didn't take the lymph nodes as the freeze looked good during surgery...no disease.  I was so happy when the doc told me that that I hugged here.  Mom has recovered really well and has been up and about since the day after the surgery.

We met with the doctor today to get the pathology results. NOT GOOD.  It turns out the lymph nodes are full of disease and they want to go back in and take them all.  The tumour that they thought was 2.5 cm was 6.5 cm and 0.1cm from the chest wall.  It cancer is grade 2.

So just when we all thought all the scarey stuff was over (we knew chemo would suck and radiation was really a done deal) we get more bad news. My mom has always been swollen.  Her feet, legs.  She is a perfect candidate for lymphodema.  She has been so relieved that she wouldn't have to go through that.  

My dad is a mess, my mom is in shock and I'm sitting in my living room eating sushi wondering what to do.  I let me guard down.  I'm so angry.

How do people get through this?  How do people not want to scream all the time and wonder why everyone else is so happy?  

mrsnjband

So sorry to hear that you got news that isn't as good as they thought it would be.  It is really hard to watch someone you love go through all this, in some ways its even harder.   Is there anyway for you gto get involved in a support group? That would probably help you work through all the feeling you are going through. The way you get through it is one day at a time. So hang in there you can get through it. NJ

Carla9112

Hi there - I too am so sorry to hear about the bad news. It seems like from the minute you find out about a cancer diagnosis you and your family are on a roller coaster ride - all the ups and downs can make you crazy.  How do you get through it?  Just like Norma June said - you take one day at a time because sometimes thinking about more than that can be overwhelming.  For me, once I got past the shock and fear from hearing the bad news and cried for a day or two, I got ticked off and went into 'fight mode".  Now, I'm just determined I'm going to beat this thing.  Stay positive and try to help your mom to do the same.  Maybe she will be one of those people that just doesn't have many SE's from chemo or radiation.  Everybody is different in how they handle it.

Stay strong and know that I'll be praying for you and your family.

Many hugs to you!

mdg

Getting through this BC crap is hard.  Sometimes it's day by day.  Other times it seems minute by minute.  It's normal to be angry.  We all get angry.  No one should have to deal with this and it's not fair.  It just plain sucks.  I am sorry your mom has to go through this and drag all of you with her.  This website is full of information and people that will help support you and your family as you move forward.  I am sorry you got such bad news.  Hugs!

Binney4

nicmid, what a shock that was for all of you. Lots of treatment ahead, and it all seems so daunting. You mentioned earlier that you had recently started a new job as well -- that's all an awful lot of challenge to deal with!

I like Norma June's mention of "one day at a time." It's all anyone can handle, and just putting one foot in front of the other that way you really will eventually get to the end of this treatment nightmare. And yes, we all (and our loved ones too) know exactly what it is to feel like screaming all the time, and to wonder if we'll ever be happy again. Good news is, it does get better.

I wonder, nicmid, if your mom already has a lymphedema therapist? If so, she should get in to see her before the next surgery and get baseline arm measurements for future reference and some personalized tips for lymphedema risk reduction. Staying on top of it will mean she can control any new lymphedema and keep it from progressing.

If she's never seen a lymphedema therapist for the swelling in her feet and legs, then now's a good time to hook up with one. Any doctor on her team can write a referral for evaluation. It can be a trick to find a well-qualified therapist your mom feels comfortable working with, so here's information to help you locate one near you:
http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm

I know that seems like a small thing when you're all faced with such big decisions and adjustments, but it is one thing you CAN control, so it doesn't control you.

Gentle hugs to you and your mom,
Binney

Crochetcynde

Watching a loved one, especially your mother or in my case my sister, with cancer is just overwhelming.  I was REALLY angry.  After that first phone call from my mother, I laid on the floor and screamd like a banshee.  After the screaming, I sobbed like a baby and was thankful that the police didn't come...  When I felt like screaming after that, Ron would take me out to the country.  Usually by the time we were out there, the desire to scream was over but just getting away was a good thing.

So, if you want to scream, scream.  If you want to cry, cry.  Be prepared for the good days and cherish them.  Make lots of good memories and find reasons to giggle and laugh.  Just BE.

Find a support system especially with people who are going through it like the good people here.  I didn't do that until now and I believe dealing with this would have been easier. 

sweetbean

Find out if your mother is a candidate for Reverse Arm Mapping - it is a new lymph node procedure that removes only the lymph nodes associated with the breast and leaves the arm lymph nodes alone.  They do this by injecting a die into the arm five minutes before the lymph portion of surgery.  In the five minutes, the dye colors the arm lymph nodes and the surgeon doesn't take them.  

 This is a new procedure, so it doesn't have 5 year studies on it yet, but initial follow up are very encouraging.  Because people still have their arm lymph nodes, they are not developing lymphedema.  I had this procedure done, they took 15 lymph nodes, and I have not developed lymphedema.   

Binney4

Sweetbean, that's really great that you were able to take advantage of the new procedure. May you always remain swell-free!

Axillary Reverse Mapping (ARM) is used (usually in conjunction with SNB) to avoid the axillary nodes that drain the arm, but only when they're not affected. The procedure isn't available everywhere, as it's fairly new and, as you say, largely unstudied. There are still risks for lymphedema following any breast cancer treatment, because scarring and radiation can also block lymph flow. And truncal lymphedema (breast, chest, back, and/or side) remains a real risk as well, especially with SNB and radiation.

The newest Position Paper of the National Lymphedema Network advises pre-treatment assessment by a well-trained lymphedema therapist, as well as on-going arm measurements and questioning regarding swelling or heaviness at every onc visit. Not gonna happen anytime soon! But it's a great guideline for optimal bc care.

Be well,
Binney

nicmid

Well, to fill you in, mom had the surgery last Friday (before Canadian Thanksgiving!!!).  She did really well.  Really she amazes me.  I hope one day I can have her courage and dignity.  Anyway, I had to make the WHOLE turkey dinner myself I even made the pastry for the pie!!  I rocked.  Mom had no stress and she got the chance to sit outside on a beautiful day and read her book while I slaved away .

Her arm is not swelling,,,yet.  Mom went shopping today.  By herself.  I'm not sure about the driving thing, but I can't control everything.  I am realizing that.  I can't control everything.  I don't like it, but I guess it's reality.  I can't control cancer, I can't control her driving and I can't control what the doctor says in a few weeks when the pathology comes in.

Good news is that when they did the mastectomy they happened to get a few extra lymph nodes that weren't examined in the initial pathology.  Well, just before the surgery last week, the doc told mom that they were clear.  YAY!  One positive thing.  I know that this doesn't mean that all the lymph nodes will be clear, but I like having one positive thing.

So now we are waiting for CT scans, bone scans, pathology results and the damn drain to come out.  We are waiting for a referral for a medical oncologist and the start of chemo.  We are waiting.  In a holding pattern.  I haven't screamed this week...I've been distracted with the thoughts of getting myself pregnant and having a baby by myself, but that's another story...

So waiting.  Thanks for all of your advise and cyber hugs.  I send them back ten fold.   

amyslack

Hello., my name is Amy..I dont know if this is too long ago that you will read my posting but your story is so similar to mine that I had to take a chance and see if you will still get to read this.  Our stories are so so similar that it is like looking into a mirror at my story!  I too...lost my older sister., she was 10 years older than me and died on October 3, 2011 at the young age of 62., I am 52 right now.  She died of breast cancer and went thru so much towards the end.  I had every hope that she was going to beat this terrible cancer but she just could'nt fight it any longer and passed away from Nutropinic fever (I doubt that is spelled right) What that illness is if you are not certain, is that my sister could no longer fight any kind of infection and it finally did her in when she got real sick from a bad cold that got worse and worse and finally turned into pneumonia.  She was taken home 12 hours b4 she passed.  Her son, who attended Harvard Med School and was just graduating from his residency out in Bostn flew in from Boston to help his very sick Mom.  She wasn't right away in ICU and he made sure she got there.  He caused quite a stink so that his Mom could get the care that she so deserved. Their immediate family consisting of my nephew, his brother and her now widowed husband agreed to take her home because she wasn't going to get any better. She had reached the end of her fight.  Up untill the day she died she begged her sons for them to continue to fight for her life.  She was so sick., I was constantly at the hospital with the rest of the family, going into see her to pray.....It was the hardest thing I had to go thru since we lost our Mom back in 1989.  I was 29 when my Mom died and my sister Peggy who as I mentioned was 10 years older took the place of my Mom.  She didn't want to fill that role but in my eyes she was just like my Mom that I had lost.  I was 19 when my Dad died and my sister was there for both funerals of my Mom and my Dad.  We had lost a brother earlier in life as well.  Being the youngest of 6 children (3 girls and 3 boys) it was hard for me not just by being the youngest in the group but also all the terrible calamitiies our family had gone through.  Everone seemed to handle all these deaths in the family with ease., not me......still not handling it well...My sister also had a September birthday (September 4) and she passed on October 3,  She was diagnosed with breast cancer 10 years earlier on the exact same day that she died.  Towards the end of her life I had the wonderful privilidge to re-connect with my big sister.  My brother in law as getting quite overwhelmed with her illness and I volunteered to take her to her chemo treatments and come out to their home 3 or 4 days per week to sit with Peggy during the weekday afternoons.  I was involed in a car accident approx 9 mos b4 and was out of leave from my job as a 911 operator.  It was the best most wonderful time of my existence!  I had the wonderful, glorious opportunity to re-connect with my big sister.  We talked about GOD, our faith, our parents, old memories, we picked up the craft of punch needle together and started selling on ebay as a great way to get away from all the heartache and illness that was going on in her life and......affecting me unfortunatly just as much.  My sister passed away in the same month as your sister.  I just wanted to let YOU know that you are feeling exactly what you are suppose to feel. I still think of my big sister every single day.  I probably think of her at 50 times a day and I too wonder when oh when will this ease up!  I dont know if it ever will and maybe it shouldnt.  I miss her terribly to this day and go out to the cemetary to talk to her all the time.  I am trying to figure out a good way to put my big sis's memory in existance at least for me for the rest of my life.  You are going to laugh but my daughter who is 36.....recently got a tattoo of 3 faires to represent her 3 daughters hanging in between beautful colorful vines on her backside.  I am a person who believes in GOD and was a little taken a back at her decision to get a tattoo...but you know what...I think I am going to get one in the form of a breast cancer ribbon in the middle of butterfly wings.  I want to keep my sisters memory alive with me and me only forever more.  To me...this is a wonderful way to acknowledge her existence and that she had a much bigger role in my life than she ever thought.  I know it may sound stupid and canny., I am 53 years old now and have never had a tattoo..but I want one now...!  I think my sister would be honored at my choosing.  I loved her very very much and can't wait till the day that I get to be with her again.  I do believe in the after life and when I see her next., She will be well and dancing thru the fields of colorful flowers up in GODS kingdom.  Take heart that their ARE OTHERS out their in this big old world., I read your story and I know exactly where you are coming from., I dont even know your name but that doesnt matter the man upstairs does and as I go to lay my head down tonite., I will think of you, whomever you may be..and whisper and simple praryer that you will find peace...that someone else out there IS thinking of YOU!!!! It is good that you still think of your big sister there is nothing wrong with that!! Just hang in there as I am hopefully for both of us the pain will subside over time....Take care of yourself...and you certainly must not be all bad...by your user name you must LOVE to crochet., I do too., I am a left handed crochet girl and had a really tough time learning this wonderful relaxing craft., I have it down now after years of practice..GOD's BLESSINGS TO YOU!!!!  Respectfully, Amy Oak creek WI

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