Scared...

PrimaDonna

I am a wife and mother of two. In February 2014 I was diagnosed with BC after I found a lump and went for a mammo. I was then sent for an ultrasound and biopsy which confirmed that I have IDC. I'm only 43.  My cancer was not visible on my mammo. I had my lumpectomy and SNB last Thursday, 4/17/14. My doctor said I would hear from her today or tomorrow so I have been a nervous wreck. I was told I am stage 1 and my lump was 11 mm, but I know that can change after the lumpectomy results. I am ER & PR+, and my BRCA results were negative.  Since my surgery, I feel tightness in my chest almost like I'm having asthma or pneumonia. I don't know if this is nerves, due to a breathing tube during surgery or God forbid, my cancer spreading...I know I will need radiation. I pray I won't need chemo. Due to my cancer having + receptors, I expect Tamoxifen, too. I can't stop crying and feeling so many emotions - fear, anger, guilt, shame. Does anyone have a similar story to mine?  Did things end well?  Please give me some hope. You all seem so brave and gracious. Thank you. 

Moderators

PrimaDonna, welcome to Breastcancer.org, although we're sorry you had to join this awesome community. 

Until you hear from other members from their own experiences with IDC, you can learn much more about treatments and other questions you may have, from the main site's section on IDC. 

Best wishes,

• The Mods

doxie

PrimaDonna,

So sorry you have to join us here.  We will try to help as we can.

My story is different than yours, but it sounds like you may be having anxiety symptoms.  Regardless, whatever is going on should be treated to help you recover and move to the next treatment of care.  I'd suggest that you call you surgeon's office and report your symptoms instead of waiting for her to call.  It may prod her to call you sooner.  

Try some slow deep breaths while you wait.

PrimaDonna

Doxie,

Thank you for responding to me.  I'm just so frightened.  I will call today if I don't hear from my surgeon. May God bless and keep you. 

peacestrength

PrimaD-  Let us know how you are and if you have questions.  I was 43 when dx - mammograms missed it too.

LovebeingNana

Hi PrimaDonna,

The waiting is the hardest part. My doctor gave me ativan to help get through the initial weeks. You might ask your doctor if you could have something to help your anxiety as you walk through this. That is totally reasonable. This time now while you wait for answers and wait for the doctors to make a plan is so hard but it does get easier. There is a lot of hope. It doesn't make it less scary, but there is hope. Take care and know you are not alone. 

PrimaDonna

peacestrength and LovebeingNana,

Thank you for your replies. I see you are both having chemo. I wish you all the best to overcome and beat this disease.  You are both ER/PR+ like me. Peacestrength, we are also the same age so I guess I better prepare myself that chemo will probably be recommended for me, too...May God bless you both. 

Lakegirl1

PrimaD...I too am 43 and was diagnosed right before Christmas on my 1st mammo.  I have my appt with the MO on May 1 to discuss chemo at length.  I don't have any info re: the plan.  The waiting game is the worst.  As others have said, talk with your doc's about how your symptoms.  There are meds they can give you to help you feel better...  It has also helped me to take one thing at a time.  When you look at the whole picture, it is just too overwhelming. 

PrimaDonna

thank you, Lakegirl1. 

Best of luck to you!

PrimaDonna

just got the call from my dr.  My stage 1 has been upgraded to stage 2. My tumor was 1.5 cm, and I had 2 out of 3 nodes affected. Does this mean I can't beat this?  My husband has been my rock. I reassured him all along that it was caught early and stage 1. When my doctor gave me the news, he punched the wall and cried for the first time in front of me. I don't know if I can do this now that the news keeps getting worse. I feel so guilty for putting my loved ones through this.  :-(

LovebeingNana

PrimaDonna I am so sorry for your news. But it does not at all mean you can't beat this. I love to look at the board called "Success stories" and you will see lots of great outcomes for people with diagnoses like yours and some even more challenging.  It is so hard to get news like that when you weren't expecting it, but the Doctor's will develop a plan for you and it will get easier when you have a plan. Take a deep breath. And really if you think you might need something to help your anxiety don't hesitate to ask your Doctor for it. 

LovebeingNana

Oh and no feeling guilty!!! You are not putting them through this. They will walk with you through it because they love you and all I can say is there have been some blessings for me, for my husband and for my kids in the midst of this. You can do it. You can. 

peacestrength

There are many of us with positive nodes.  I know a 3 time cancer survivor who had bc 2x. The first time she had 2 nodes positive and 2nd time 10 years later, she had it in 9 nodes - that was 1997.  She is still NED and has her own organic farm.

This is breast cancer's fault - not yours.  You need your family and they need you.  You can do this.  I didn't think I could either but here I am.

farmerlucy

PrimaDonna - Stage two is still early stage and your prognosis is excellent. I think the thing we get stuck on is that there are no guarantees. It is so terrifying - but somehow, ever so slowly, we start to accept it. It is way too early for you to be anything but scared. LovebeingNana had a great suggestion about antianxiety meds. They were made for times like these. I needed them, plus an antidepressant, and counseling to help me move forward. Take things step by step. I too felt so guilty for "putting" my family through this - my counselor set me straight on that.. She said, "If roles were reversed would you want to be there for your husband, daughter, (fill in the blank)?"

  I imagine the tightness is your chest is anxiety. I had it and I felt like I could not breath. My PCP did a ct scan of my lungs to check things, and they were fine. Anxiety can do a number on us. Your throat may feel like it is closing. You may shake, even in your sleep. Right now is the scariest time, but it will, ever so excruciatingly slowly, start to get better.

Consider joining the surgery group for your surgery month. All the ladies there know exactly what you are going through as they are right there with you.

Gentle hug.

mz_mes

That's great advice LovebeingNana.  It is hard waiting for results and trying not to jump to conclusions before you have information about your personal situation and the treatment plan being put together for you. I hope you have an appointment very soon to meet your medical team and figure out next steps.  This is a great site to get moral support from others in same or similar situations.   Crying together is a natural release especially as new information emerges.  This is hard. You are allowed to feel what you feel but try not to give in to guilt as this is not your fault.

PrimaDonna

You are all so brave and kind. I will take strength and inspiration from you. I know this will sound vain, but I'm so afraid of chemo because I don't want to lose my hair. There. I said it. Terribly shallow, I know. May you all beat and kick the heck out of the odds.  Hugs and prayers for each of you. 

Lenn13ka

Hi Prima Donna- we are exactly a year apart. I was EXACTLY where you are now in many ways. I had surgery on 4/17/2013. Was stage 1 going in and ended up stage 2 coming out. When  I received that news I was devasted. The phone call was horrible. I didn't trust anyone for awhile after that. 

I tried to learn as much as I could about BC. I had an oncotype test done and I got a second opinion at the best NCI near me ( Dana Farber). With lots of study and information I got a treatment plan together. I ended up not doing chemo but had 35 full breast rads with 7 boosts. I am on Tamoxifen for 2 years followed by an AI for at least 5.

A year later.. I just had all my follow ups with my MO and Surgeon. I still see my second opinion MO every so often to have her check my treatment plan based on the latest research information. Slowly, breast cancer is getting put on the back burner. It was a bumpy year but I also tried to live a fun life and have done some great things. Work and life went on with just a little interruption.

You will feel so much better when you get your team assembled and a treatment plan. LEARN as much as you can. Treatment is so individualized these days. Even if you choose to have chemo, it is not like the old days. You WILL get through this and life will go on. BREATHE (and learn) and you will feel more in control.

PrimaDonna

Lenn13ka, thank you. You gave me hope.  :-). I will try to follow your advice. We do have a similar story. Are you around my age, too?  43. You don't have to say yours, only yes or no about being close or not. I'm happy for you and wish you continued good health.  I'll update you all after my appt. with my surgeon and Onc. God's peace. 

Lakegirl1

PrimaD...the hair thing is my biggest fear too!!!  It is not vain or silly.  I can cope much better if I don't look sick.  I personally need to be able to have times when I can forget for a little while.  When you have your hair it is much easier.  

Remember...we will put up the good fight and beat this, that is our only option!!  Take things one step at a time.   1st talk with your doc, there is absolutely no shame to say you need help to get through this and there are def meds that can help.  

When I get really down, I just keep thinking about my daughters, 6&8, they are the reason for all I do!!!  

Prayers to you and your family...

PrimaDonna

thank u, Lakegirl1. Your babies r definitely worth fighting for. My boys are 5 & 10. They r my life. I will fight. U r in my prayers, too. Stay strong. 

JanetP1507

Hi PrimaDonna,

Yes it's SCARY!! I'm 47, was diagnosed on 3/31/14, had a port placed last week and I'm starting chemo in a couple of hours. I am stage 2a, grade 3, invasive ductal carcinoma. My MRIs showed no lymph node invasion but my BS insisted on a lymph node biopsy this past Monday just to be certain. She called me yesterday but I missed her because I was getting my first "day before chemo" blood draw so I'm hoping to reach her before I go in today. Stage 2 is definitely TREATABLE AND BEATABLE!! My BS looked me in the eye and told me she's giving me an 85-90% chance of total recovery by the end of the year. 

I agree with the other ladies--talk to your doctor about your anxiety and ASK for something. I did, and was given Lorazepam and now I actually sleep through the night! Get outside for a walk if you can, nature is great medicine! Hang in there

SpecialK

If you are concerned with losing your hair you can also ask your oncologist if they would permit you to use cold caps.  Here are some threads with info:

http://community.breastcancer.org/forum/6/topic/735873?page=362#post_3993379

http://community.breastcancer.org/forum/69/topic/819973?page=1#post_3991108

PrimaDonna

Thank you,  JanetP1507. 

Best of luck to you with your treatment. God bless you and keep you through this.

PrimaDonna

thank you, SpecialK. Great picture of you!  I will check out the links you posted. I appreciate it!  Stay well. 

PrimaDonna

Have any of you had any experience with The Cancer Treatments Centers of America?  I saw the commercial and called. They said they might have done an inoperative radiation procedure at the time I had my lumpectomy, instead of the weeks of radiation I may be facing. They also mentioned advances they have with chemo and other treatments. Sounded good, but a little too easy.  ?

SpecialK

primadonna - there are a number of sites nationwide that have intraoperative radiation (IORT), one is near me in Tampa, but you have to be a candidate for this procedure.  You need to have a fair amount of breast tissue to provide a cusion of sorts for the radiation bead - if you are small breasted you may not be a candidate.  Cancer Treatment Centers does not have a monopoly on this form of radiation.  Also, you would need to check and see if CTC takes your insurance, they do not take all of them.  I do not have any experience with CTC, either personally or anecdotally from others, so I can't speak to their process.  If you have concerns about receiving the most up to date therapy I would look for an NCI center.  Here is the link to how to find one:

http://www.cancer.gov/researchandfunding/extramural/cancercenters/find-a-cancer-center

Thanks for the compliment!  My hair is now down to my bra strap, and I have cut off at least six inches since it has grown back - that avatar picture is actually about a year old.

PrimaDonna

specialK, you are an angel. Thank you. I'm sorry to say I'm VERY small breasted so I'm relieved that I didn't make a mistake. It probably wouldn't have worked for me. 

PrimaDonna

My breast surgeon staged me @ 1 prior to my lumpectomy after lumpectomy had 2/3 positive nodes, she said I was stage 2. I just got my post surgery pathology report. Can someone lease explain T1cN1a?

momand2kids

PrimaDonna

just wanted to let you know that I too went in as stage 1 grade one, came out as stage 2, grade 2---threw me for a loop.  but really it was just that the tumor was slightly bigger than they estimated going in--happens all the time.  

I had the oncotype test and it came back in the gray area...decided to to 4 rounds of chemo--- lost the hair (and I have great hair, if I do say so myself!).  Got a kick ass human hair wig and pretty much rocked it--- truth is, no one much cares about your hair but you--I was astonished at how few people noticed..... went to work every day--- almost no one noticed.  Chemo was hard, but not impossible.  My kids were 12 and 7 at the time.  It was hard, but I think they remember very little of it now.  I am 5.5 years out with a full head of beautiful hair again---- and I feel great!  I consider myself done with cancer.  

You can do this.... it won't be easy, but you can do it.  I highly recommend finding an NCI cancer center near you if you can find one...... 

Best of luck.

PrimaDonna

Thank u, KayB & Mommand2kids. I'm going to look for a kick ass wig, too, but I'm still hoping for no chemo...stay well!

dancingdiva

Hi there,

so many girls here, my age and with kids. Astonishing how many people get this disease. i'm 42  2kids 8 and 6.

The whole hair thing is really psychological. I had long black curly hair but when i was 28 it started shedding. i suffered from hairloss and depression for over a decade until i finally walked into a wig place and got a top hairpiece. it was like i was reborn! And i had great hair every day! I don't think most people notice unless they are wearing a piece, as i am always staring at people's scalps and seeing hairlines or not. in anycase, i struggled for years being scared of hairpieces and wigs and now i only iwsh i had started sooner and not been so depressed. wigs are really not a big deal. and SO many people wear pieces, extensions, etc. DO whatever is better for your health. Your hair will grow back in any case.