I'm a mess

Jenmarie9

I've been lurking for a few weeks now. It's so hard, as I know you all know. I carried around my mammo script for about 8 months, since my primary care dr told me to just make sure I got it done before my 40th birthday. I waited until 4 days before my birthday. My life has not been the same since that phone call. It was my primary care dr telling me that I needed to call a breast surgeon and schedule a biopsy. This call came only 2 hours after my mammogram. I fully expected it all to be normal. No history in my family of any kinds of cancer. I am a rule follower...I always get my teeth cleaned every six month, paps once a year, physicals once a year. I never expected this.

Fast forward two days to my stereo biopsy. I cried the entire time. It was one of the worst days of my life. Then the diagnosis the next day...DCIS.

I proceeded to meet with a radiation oncologist (love him) and walk out on an oncologist (didn't love him). I scheduled my lumpectomy and SNB for April 15th. I'm still healing from that and my nodes are clear. I wasn't prepared for the swelling, but I'm ok.

Today was my post op appointment with the breast surgeon. My pathology report showed that although its mostly DCIS, there is some invasive. I am having such a hard time of this. I just need some good news for a change. Next they are sending me for an MRI.

I hope its ok to post here. Even though I'm now considered stage 1a (?), I feel like this is where i belong for now.

Lowrider54

It is so hard.  You are not a mess - you are having a totally normal and expected response.  I may be at stage iv but despite any stage, the beginning of the journey is the same - shock, horror, and a mess.  I feel for you and wish you all the best.  Once you know where you are going with treatment and such, things do start to look brighter...hang in there!

Hugs

workmother

Hi Jen. I'm a mess too. I just had my lumpectomy and SNB on Tuesday. I go next Friday for my post op appointment. I was diagnosed with Invasive Ductual Carcinoma. They took out two nodes that were clear. I was told I'm stage 1 before the surgery. Do you know what makes you considered stage 1a? I'm very anxious about my post op appt., not knowing if there will be anything new for them to tell me. My surgeon recommended me to an oncologist but I don't have an appt with him until 5/13. Seems like forever right now. And I don't even have a radiation oncologist yet. I am keeping you in my prayers for good news from the MRI. Let me know how things go.

jdfnj2

Jen - So sorry you are dealing with all this.  And right now - ofcourse you're a mess!  more important - you are entitled and totally allowed to be a mess.  It's a shock - and a whole lot to absorb.  What did the mammo show?  When is your MRI?

Jen

Jenmarie9

Thank you both for responding so quickly.

Lowrider-I think the problem that I'm having, is that the surgeon seemed so convincing that it was DCIS and DCIS only. She told my husband after surgery that it was "encapsulated", which we thought to be a good thing. I know the little buggers are microscopic, but I thought my next step would be healing and then radiation.

Workmother- My husband made the breast surgeon go over every stinkin' word on the pathology report. The "a" in 1a referred to the size of it. "a" being the smallest and "c" the largest. How are you feeling after the surgery? I was still icing last night b/c of swelling and soreness. Of course, today after the latest news, I'm feeling no pain. Keep me posted.

I have two young children. I try and get all my phone calls, appointments and crying out while they are at school. It's so hard to try to be strong in front of them. Not to mention the softball and baseball practices and games to smile through. By the end of the day, I am so mentally exhausted.

Thanks again...Jen

Jenmarie9

Jen-the mammo showed micro calcifications, but the surgeon thought that the way they were clustered was very suspicious. That led to the biopsy (again...worst. day. ever.)

I haven't gotted the call yet about the MRI, but definitely next week.

I'm grateful for this board. I have learned so much while "lurking". You ladies are amazing.

AmyIsStrong

Ladies - I am so sorry you are going through this. It is very difficult/painful/scary in the beginning but it really does get better, even going through treatment is easier than that awful shock of discovery and bad news. Strange but true, I promise! And many ladies on here will say the same!

I was stunned beyond belief at my diagnosis. Took a month to be able to eat or sleep again, and I'm not kidding.  Having young kids around to keep you on track is a GOOD THING - I didn't have that - although my girls (in their 20's) have been wonderful!

While this is all horrifying and upsetting, and it takes a while to digest it emotionally, the most important thing now is to gather all the info you can (both from here for general info and from your medical team for info specific to YOU) and make good decisions about your course of treatment. Use those beautiful children as your motivation to make good choices that will keep you strong and healthy to dance at their weddings and be a grandma to their children one day.

I used a relaxation/visualization CD that helped me TREMENDOUSLY in the beginning. It was by Peggy Huddleston - you can search for it on Amazon and it is easy to find.  She helps you prepare for surgery/chemo/whatever and relax to heal faster (I think that is the name of the CD). I put it on an IPOD and did it morning/night and kept it by my bed if I woke up at night and couldn't fall asleep. It is only 20 min and I would be asleep before it was over.  I cannot recommend this highly enough. PLEASE try it (or something similar) before starting with pharma products to help you relax and/or sleep. I did take some xanax occasionally in the beginning b/c I wasn't eating and the doctor wanted me strong for surgery. (Since then I'm eating FINE and they want me to lose weight! Go figure!)

Anyway, I just finished a year of treatment and am doing wonderfully. But I remember those early days and how dark & scary they are. So I wanted to stop by here and reassure you that you WILL make it, it WILL get better, and we WILL be here on this board to help you every step of the way.

In sisterhood & support,

Amy

ps. Feel free to PM me if you have any specific questions.

AmyIsStrong

Ladies - I am so sorry you are going through this. It is very difficult/painful/scary in the beginning but it really does get better, even going through treatment is easier than that awful shock of discovery and bad news. Strange but true, I promise! And many ladies on here will say the same!

I was stunned beyond belief at my diagnosis. Took a month to be able to eat or sleep again, and I'm not kidding.  Having young kids around to keep you on track is a GOOD THING - I didn't have that - although my girls (in their 20's) have been wonderful!

While this is all horrifying and upsetting, and it takes a while to digest it emotionally, the most important thing now is to gather all the info you can (both from here for general info and from your medical team for info specific to YOU) and make good decisions about your course of treatment. Use those beautiful children as your motivation to make good choices that will keep you strong and healthy to dance at their weddings and be a grandma to their children one day.

I used a relaxation/visualization CD that helped me TREMENDOUSLY in the beginning. It was by Peggy Huddleston - you can search for it on Amazon and it is easy to find.  She helps you prepare for surgery/chemo/whatever and relax to heal faster (I think that is the name of the CD). I put it on an IPOD and did it morning/night and kept it by my bed if I woke up at night and couldn't fall asleep. It is only 20 min and I would be asleep before it was over.  I cannot recommend this highly enough. PLEASE try it (or something similar) before starting with pharma products to help you relax and/or sleep. I did take some xanax occasionally in the beginning b/c I wasn't eating and the doctor wanted me strong for surgery. (Since then I'm eating FINE and they want me to lose weight! Go figure!)

Anyway, I just finished a year of treatment and am doing wonderfully. But I remember those early days and how dark & scary they are. So I wanted to stop by here and reassure you that you WILL make it, it WILL get better, and we WILL be here on this board to help you every step of the way.

In sisterhood & support,

Amy

ps. Feel free to PM me if you have any specific questions.

sweatyspice

Jenmarie -

No!  You have too much cancer!  You're not allowed to post here!! 

JUST KIDDING.

Rant away, my sistah!!!  Depending on how things go, you may find that you're able to get more relevant support in the Stage 1 forum, but you're certainly welcome to post here too.

BTW - I applaud your husband for making them read and explain every single word.  I'm sorry you've joined our club, but welcome. 

And think about getting some antianxiety pills for the MRI procedure.  It's not painful (other than having an IV) but it's mentally stressful.   Also, if you're really claustrophobic the MRI may freak you out, so discuss that with your doctor beforehand.  I'm not claustrophobic but was panicking about my diagnosis, so I took one xanax before my MRI and it helped a lot.  I think I might have been so relaxed that I fell asleep in the machine (not sure if I did but I thought I might have).

Best wishes to you!

SJW1

Jen Marie,

You might want to consider getting a 2nd pathology opinion, just to make sure that you do have invasive cancer. Pathologists don't always agree with each other.

After my lumpectomy for DCIS, I was told that 5 out of 6 margins were not clear and that I would need a mastectomy. I had Dr. Michael Lagios, a world renowned DCIS expert and pathologist review my pathology slides and he diagreed with my local pathologist. He said that I did get clean margins and did not need further surgery.

Anyone can consult Dr. Lagios through his breast cancer consult service. Check him out at his web site: http://www.breastcancerconsultdr.com/. I would recommend him to anyone. He is one of the most well known DCIS experts anywhere.

Best wishes,

Sandie

PS If you would like more info or have more questions send me a private message and I will be happy to help in any way I can.

redsox

Jenmarie,

A second opinion from an NCI-designated Comprehensive Cancer Center or other major cancer center is always a good idea.  An important task is to assemble a team of all needed specialties that you love. Even though your diagnosis is now invasive breast cancer that still may be very favorable. 

Since you have an invasive component I don't think a second opinion from Dr. Lagios would be that helpful.  His specialty is more in the area of degrees of DCIS.

Surgeons can be surprised.  Mine told me she expected the results to be benign -- about as strong a statement as you can get from a doctor.  Some things are hidden.  It is good that you have found them whatever the surgeon expected.

1WonderWoman

Jenmarie9-

Mark Twain said:

I have been through some terrible things in my life, some of which actually happened.

Your mind is playing tricks and you are running down all the possibly worst case scenarios for what could come of this.  You might battle this, get by it and become a proponent  for others similarly situated.  We might all collectively do a Forest Gump walk across this country and keep fighting the medical industrial complex to reveal the cure for this disease.  Don't count yourself down or out and don't allow the ghosts of dreadful possibilities to complicate your mind.  Exercise...endorphins are our best friends in the entire universe.  Every time you feel down, walk, ride your bike, stick your legs out while you are riding and let the breeze flow over you.   You must not concern yourself with things that HAVE NOT HAPPENED.  Yes, we have been diagnosed and worrying about this is like worrying about the actuarial tables that predict our chances of fatal car accidents. This is fatal for 1 out of 5...the other 4 are trucking along.

BTW, Invictus was not just a movie...it is a great poem and we all need it for inspiration:

Out of the night that covers me

Black as the pit from pole to pole

I thank whatever Gods may be

For my unconquerable soul

In the fell clutch of circumstance

I have not winced nor cried aloud

Under the bludgeonings of chance

My head is bloody but unbowed

Beyond this place of wrath and tears

Looms but the horror of the shade

And yet the years find me and shall find me

unafraid

It matters not how straight the gate

Or how charged with punishments the scroll

I am the MASTER OF MY FATE

I am the CAPTAIN OF MY SOUL

I also know the Gettysburg Address by heart if anyone is interested!
Best of luck-
liz

laurakay

I'm no expert--although I know a lot more than I ever wanted to know on this subject--but I took was found to have a small invasive cancer (1mm).  I'd had a mastectomy, and it was found after that, but my doctors have assured me that the 1mm in no way changes my treatment, etc., since there were no nodes.  Since you've had a lumpectomy, I imagine they're doing the MRI to make sure they've got all the invasive, and that if there's more, they'll take that out, which will not be fun, certainly, but will also not make your situation anymore dangerous.  Still, I can totally understand your despair.  You're at the worst point in this, and it WILL be better.  It seems from what you've posted that, although you have stage 1a bc, they've caught it at the absolute earliest point, and that you are far more likely to live a long and healthy life after this than not!  

workmother

I never heard that Mark Twain quote before and I think it will become one of my new favorites! I have a mind that does put myself in terrible places that I'm not really in. My husbnad keeps telling me to stop giving myself things I don't have and just try to deal with what we know so far. I'm three weeks into breast cancer and am trying to learn to live in the moment.

Jenmarie9

Thank you all for your encouraging words. Sweatyspice-Thanks for the laugh

1WonderWoman

Jenmarie-

One more thing:  I don't like the closed MRI either so, depending on where you live, there is an open MRI.   See if that is an option.

Good luck-

Jenmarie9

I made a few phone calls last Friday afternoon to get other opinions. The weekends are hard to get through

So hopefully tomorrow I will know more and certainly by the end of the week.

I scheduled a facial and a pedi for tomorrow morning (a birthday present from my Mom and brother). I was going to cancel, so I can get all these phone calls/appointments made, but a good friend said "No! Nothing will change in two hours! Go pamper yourself!" After this "hellish" month, I think she is right.

1WonderWoman

Sunflowers-

I have a question:  I had a core biopsy and they say the chances of a "false positive" on a core biopsy are less than 1/2 of 1%.   I did not elect a second biopsy for confirmation because of that.  When you all refer to second opinions, do you mean second opinions on how to proceed with treatment OR get a second opinion confirming the biopsy findings?  I am just wondering because I toyed with the idea of a second biopsy with the false posiitve margins so low on core biopsies, I abandoned that idea.  I can only assume what you mean is if I am not on board with their proposed treatment to get a 2nd opinion? 

Sorry to jump into this conversation like this but I just was wondering what conventional wisdom was on this.

Thanks,
Liz

JennyB100104

Jenmarie, I am just about a month ahead of you in diagnosis. I'm your age, too, and have 3 young children. I'm healthy as can be and have no family history, either. I know *exactly* how you are feeling.

I do want to tell you, it does get better. Each day I feel a little stronger and a little more able to handle this & what's to come (chemo starting week after next...((deep breath))). Turn to others for support, ask for help, take pleasure from your kids...all of that helps. And exercise has been helping me too. It's springtime and everything is blooming...I am loving just being outside right now (more than I ever have before). As you said, pamper yourself! Enjoy your spa treatments tomorrow.

Liz, I don't know about false positives, but I got a false NEGATIVE on my biopsy. Basically, the biopsy came back "normal breast tissue." I opted for a lumpectomy anyway, because I could feel the lump, and whatever it was, I wanted it GONE. The surgeon was sure it was scar tissue from a previous surgery...I still wanted it gone. It really bothered me. It was a good thing I pushed the issue, because guess what? ILC with positive margins all around, verified by a second opinion on pathology from a different hospital. I don't know what my point might be in all this except to say whatever you have in there, false positive or not, it might just be a good idea to get rid of it. 

1WonderWoman

Sunflowers-

My GP mentioned Dana Farber as I live in CT.  Of course, we have Yale (he he he!)  but for seconds I would go Dana or Sloan Kettering.   I am SO GLAD to find out that BCBS paid your Oncotype DX.  How long ago was that?  I have the best plan BCBS offered through my employer.  I was hopeful that I might some good news from someone about how they have treated bc girls b/c with the Wellpointe news this week, as they are the parent of BCBS, concerned me.  The President got right on it and fired off a warning to them but still, I have been waiting to read, good or bad, about BCBS experiences.

Thanks again,
Liz

redsox

When I say second opinion I mean for how to proceed with treatment.  There are different doctors with different approaches and different levels of experience with your particular type of cancer.  It is important to get a team you are comfortable with.

Re-doing a core biopsy is not usually a productive route.  I also had a false negative core biopsy.  I think that is more common than a false positive one.  Since I still had symptoms the next step was an excisional biopsy.

Sometimes a second opinion for pathology is good if you have reason to doubt the quality of the original path review.  If you go for a second opinion doctors at a major cancer center will usually want pathology slides for their own review.

sweatyspice

If I was going to have to deal with cancer, I wanted to make sure that a) there was some agreement that I really had to, and b) there was some agreement about what sort of treatment was needed.

I had second opinions on both treatment planning and on the pathology itself (meaning that different institutions looked at my slides, not that I had an additional biopsy).

Since I'm in NYC, and my presentation wasn't totally straighforward, I ended up consulting at Sloan, Columbia and NYU.  They all agreed on my slides, but they didn't necessarily agree on treatment.  I ended up at NYU.

I have a BC/BS of Florida PPO (I'm on COBRA.  My former employer's headquarters was in FL, so that's where they had their contract, but the PPO covers care nationally).  They haven't been a problem, at least not so far.

workmother

I had my lumpectomy at Sloan and will be meeting with an oncologist from there in a few weeks. I had my biopsy and first opinion at a local medical group on Long Island and then went to Sloan for the second opinion - they looked at the slides and agreed with the surgery opinion of the medical group. I opted to go to Sloan - seemed like a good idea to choose a specialized breast cancer surgeon from a world wide known cancer center.

Sweatyspice - I'm curious as to what the difference of opinion was at Sloan vs. Columbia vs. NYU for your treatments? I'm so happy my surgery is over and the two nodes they took were clear, but now I'm sweating what treatments will be suggested!

sweatyspice

Columbia - Mastectomy + DIEP.  Surgeon uncomfotable with anything less than mastectomy in my case.

Sloan - either Mastectomy + implants (told I didn't have sufficient belly fat for DIEP, which is ridiculous - the plastics dept is what really lost me as a patient)  or double lumpectomy (which would leave me asymmetrical).

NYU - either Mastectomy + DIEP or double lumpectomy combined with bilateral reduction and lift (which would leave me smaller, but matching).

Chose the last option. 

1WonderWoman

Sunflowers...I was really JOKING about Yale!  It is filled with students and I saw my dad go through there and die of lung cancer (Yale could not have avoided) and my poor, poor very sick mom, who has 2 strokes, go through tremendous proddings and pokings at Yale...I don't love that place as a result!
This is why I would go to NYC to Sloan, to MA to Dana or to Philly to Cancer Centers to get a 2nd opinion. 
Yale is so filled with students and I respect the fact that they have to learn so like if I have a leg muscle issue or a broken bone, I will go to Yale but for the big stuff, like this, I am petrified enough without having some kids drive the bus!   It is like you can go to the local tech school to get an oil change so the students can get some experience but when you need the engine overhauled it is best to see a seasoned professional!!!

Liz

Jelson

JenMarie9 !!

I wanted to address one issue not addressed yet, the fact that you are somehow blaming yourself for carrying around the mammo referral for months. OH Well, water under the bridge, spilt milk, cats, whatever and it very probably would not have made any difference at all. You went, they caught it and you are getting it taken care of and I am so glad you treated yourself to a "spa day" and so sorry this all had to happen around your birthday. Happy belated birthday. Next year, you will make up for it with a better birthday.

Julie E

lifegoeson

Liz,

Thank you, that poem is terrific.

For the newly diagnosed - it gets better.  The worst part is the shock, fear and panic when you first find out.  Take your time and explore your options.  This place is a wonderful resource for information and for support. 

magic03

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