Newly Diagnosed & Young

CrawMomma4

Hi everyone,



I am a 28 year old stay at home mom to a set of twin 4 year old girls and a 3 year old special needs son. I had been having breast pain and felt a mass in my breast so I went to see my ob. one thing lead to another and I had my biopsy on Tuesday. We originally thought that I may have had Inflammatory Breast cancer based on my symptoms and the fact that I have a mass and not a lump. The results came in today and I have Invasive Ductal Carcinoma breast cancer. My appointment is February 5th with the surgeons. Staging is looking like a 2, but a clinical biopsy can show more than a pathological biopsy so she said. My nuclear grade was a 3, but I don't really know what that means. She told me that sometimes IDC can present as a mass and not a lump, that it really is different for everyone.

I feel like I should know more than what she told me, or maybe the doc will tell me more? I am really looking for support, and would love to hear everyone's stories.

fd1

Hi CrawMomma4!  I'm sorry that you are here especially with your kids.  My brother is intellectually and physically hanidicapped so I know the strain special needs can put on parents.  I'm 32 but I was diagnosed a year ago with IDC grade 3, stage 2.  The grade is one measure of how aggressive the cancer is, although there are lots of other factors, like if you are hormone positive or negative, and if it is HER2.  They have a lot of information on this website, in the Understanding Your Pathology section.  I found that the doctors weren't too informative unless I asked the questions which can be frustrating since often you don't know which questions to ask! 

I found my lump while in the bath and had a lumpectomy. Unfortunately, the margins were not clear.  I then underwent chemotherapy (AC x 4 and taxol weekly x 12) for six months and had another surgery to try to clear the margin.  This one had a tiny spot which they were not sure was on the edge or not because of scar tissue.  They did another revision and this one came back positive also.  My surgeon then recommended a mastectomy with reconstruction which I had December 20.  I am recovering well.  This whole business sucks and there are days when you will feel extremely dark, no matter how positive you are.  But you'll get through it!  Give yourself a pity party and move on. 

I know I used a lot of terminology in here that you might not understand yet.  If you read this website, you'll get it!  Don't worry!  Let me know if you have any other questions.

MiniMacsMom

None of this is fun but we are all here to help each other.  There is a fair number of young women with kids facing this.  My son was 16 mo at dx.  Its not fun but they get through it.  There are lots of good books for kids that age to help them understand what may be happening.  There are some reports that indicated that having a higher grade cancer is not a bad thing.  That it tends to respond better to chemo.  My super fast grade 3 cancer responded excellently to chemo.  Did they give you any indication of of ER/PR Her status? 

I aggree with RC its definately a new language you have to learn.  If you are up for it, consider a second opinion at a National Cancer institute.  I wasn't capable of it before my MX, to upset but I did it after and I will never regret it.  BiG HUGS to you and your family.

ReneeinOH

Hi CrawMomma4.  So sorry about your dx.  It is a lot to digest, and with little ones, that just makes it that much more challenging.  I did find reading the resources on this site--about pathology, diagnosis, etc. really helped me understand the cancer, how they go about dealing with, and what kinds of decisions and possible options I have. So, when the doctors would talk, I was familiar with what they were talking to me about.

As you choose to tell people about your diagnosis, some may offer help--be sure to say yes.  You might not know exactly what you'll need at that moment, but you will need support.  Take if you can get it.  Plus, remember, people want to help you with this--they can't fix you, but by helping you, you give them an opportunity to contribute to your well-being.

We have group (2013 Sister Warriors) that you are welcome to join and go through this together.

Cindyk8

I have also just been diagnosed. I have taken my pathology report and researched every little term that I possibly can. Mine is ER/PR + & HER2+.  I am grade 3, stage 2.  I did not know what all of these things meant, even when the Dr explained them to me.  I would like to say that after I researched them I felt better, but I think I am more terrified.  The one thing I can say though is now I understand. It is very important that you understand each term in your diagnosis. The stage is the progression of the cancer and the grade is how aggressive it is. ER/PR receptor determines if your cancer is 'being fueled' by progesterone and/or estrogen. I am still doing a lot of looking at the HER2. My Dr. explained it as a very aggressive gene. 

I am still in the first stages of this process. I know that I am fixing to have to have a bilateral mastectomy & 5 months of chemo, but first  I have an MRI and PET scan tomorrow to see if my cancer has spread. I have little ones and am terrified.

Cindy

beckstar18

I'm sorry to hear of your diagnosis CrawMomma4.  You've come to a good place though to get information and answers.  I've found these boards to be invaluable!  Have you been referred to an oncologist yet?  My intial appointment with my oncologist is when she explained all the details about my tumor and what they meant (ER/PR+, Her2+, Ki67, grade, etc...).  I was diagnosed in Nov 2012.  I'm 32 and have younger kids, ages 7 & 8. I'd be happy to answer any questions you may have.  I had double mastectomy and am nearly done with chemotherapy.  

msphil

hello sweetie, we know what you are going thru been there, I had my cry when I found my lump and then I decided to fight, and all while making plans for my 2nd wedding to the most wonderful caring now husband,we will be here for you, and you and US ALL are in my prayers, by the way I am now a 19 yr SURVIVOR(Praise the Lord GOD).  msphil(idc,stage2,3 nodes involved,L mast(had choice of lumpectomy) chose mast, chemo and rads and 5 yrs on Tamoxifen)

jojo38

Hi CrawMomma4:



I, too, am a young 38 stay-home mother of 2 girls and on Jan. 30, 2013, was dx w/breast cancer. I am Triple Negative (more aggressive & less treatment options thn the typical 3 forms of breast cancer). I also was told I may of genetically inherited a mutated gene that makes me in a really rare and low percentile. I agree with others about reading your Pathology Report and any other paperwork your many doctors will give you. It's best to research your type of breast cancer to be informative to help you make your treatment decisions. Don't be shy to ask your doctors questions as well. It's unfortunate we must go through this and it's gonna be a tough road to recovery, but we women are warriors.



Everything will be ok and from what I've heard from others, accept help & join support groups. Btw: it's ok to cry, but pick yourself back up and take it one day at a time.



Sending tight HUGS your way

caandrews921

crawmomma4:

I am also newly dx, feb11,2013- 33 yrs old. I have 2 year old twin boys and a 16 yr old boy. completely new to all this as well:( Scared to death and not knowing exactly what is going on. Diagnosed with idc stage 3. Just had mri and bloodwork yesterday. treatment plan so far is 6months chemo to try shrinking my 10cm tumor. then mastectomy and lymph node removal then radiation. we can surely go thru this together!

politicomama

I think I am a few months ahead of some of you.  I am 32, two kids, daughter 10, and boy 18 months.  I found my lump while still nursing my little guy at end of July.  Thought it was a clogged duct.  Weaned and it didn't go away.  I had a bilateral mastectomy without reconstruction, 4 rounds of AC, and now I have had 7 of 12 taxols.  5 weeks left of chemo.  There are good days and bad days, but I have been able to still care for the kids and work.  If you have support system please use it.  One of my friends told me from the begining to let them take care of our family.  It is hard as a mom (and teacher) to let others do for you, but it has been such a huge blessing.  People bring us dinner on treatment days, and they stocked our freezer after surgery.   I also keep a blog for friends and family, and the writing has been theraputic for me.  I am glad to share it if you pm me.  We can make it through this.  I was on facebook earlier tonight and there was a post that said God does not give us what we can not handle, God must think I'm a bad ass.....  that is how I feel.  I have had so low points, and even after chemo I have 25 radiation treatments to go.  We can do this!  

46andsingle

Cindy,  I feel for you so much. I've already had the bone scan and the MRI and the ultrasonds and the multiple biopsies and I'm still terrified and crying all the time. I just keep hearing this women say it WILL get better. I know you are scared and I hurt for us both.  I was diagnosed on Jan 29th, IDC, stage 2, grade 2, about 3 cm. They believe no metasis and "doubt" nodes. I went and bought a book that helped me alot!  I read it cover to cover and first it will make you more scared, but in abour 2 weeks you will be glad you bought it, because in all likelihood you will have so many decisions to make the the books help you know what questions to ask. I got the Mayo Clinc Breast Cancer book. About $20. The Dr. Susan Love Breast Cancer Book has been recommended to me.  God bless you !  Hugs ---  46 and single

Cindyk8

Thank you so much for your reply. I hope you are doing well.  All of my scans came back clean. Being scared about that put so many other things into perspective.  I have had one chemo so far. I go for my next one in a couple of days. I am so not looking forward to it.  The first one was really rough. It took me about a week and a half to start to feel human again. But at this point if I have to give a week and a half to get a week and a half....well...everything is looking more manageable now. I have realized that leaning on other people is not an option. I will remember you in my thoughts and prayers. I also will look for the book.  Hugs...Cindy

msphil

hello sweetie,I have been  reading that women getting diagnosed with breast cancer are alot of young ones, it was just on T V also, a news station and they don,t know why, when I was diagnosed at 42 and they said that was young at the time, they also thought that women with no children, and who had their period before 12, so they are still guessing, But you have come to the right place for help for we all have been there and heard those words,I had my cry and decided to fight, and with HOPE and Positive thinking but most of all my Faith, I am now a this yr 19 year SURVIVOR(Praise GOD). msphil (idc, stage 2, 3 nodes, L mast, chemo and rads and 5 yrs on Tamoxifen) 

MDnowPatient

I am hoping to get this forum active again. I could use the support. I am a 34 year old internist with 4 children under age 5 (including 10 month old twins) who was just diagnosed 3 weeks ago with a very large (probably stage IIIa) ER+\PR+\her2- IDC. I am starting with neoadjuvant ddACT and had my first treatment about 10 days ago. I think I am still in a state of shock and it's consumed my thoughts 24 hours a day. With my 4 babies on my mind, I am constantly researching my long term disease free survival rates. I have accepted that if I go through this year of terrifying, painful treatment, I will be ok for the 10 years. I am now focused on the fact that an ER pos tumor often relapses as mets 20 years later. I don't want to die at 54 either. It has been difficult to find data supporting lifelong disease free survival when diagnosed at such a young age which I think would make me feel better. It's also been hard for me that I will never really have a stage with neoadjuvant chemo. As a physician, I am most comfortable with concrete data to interpret and I will never have that.  As I sit here waiting for my hair to fall out, I am hoping to find support (and provide support) from other women who have been or currently are in a similar position. 95% of the time I feel upbeat and positive but the other 5% of the time it is really hard. Thanks.

RainDew

Hi MD,

I can relate. I am also a professional women in my 30s, diagnosed in April w 95% er+ grade 2 IDC. I had surgery first, will start treatment once I have healed (6days from BMX).

Like you, I can accept odds are with me for the next 5-10 years if I do this treatment. But I can't wrap my head around the longer terms mets recurrence at all. I spent hours scouring pubmed for something to help me understand DFSR for young women like us. As far as I can tell, no one knows.

I haven't found a way to manage this constant nagging fear in the back of my head. Maybe it will quiet once I have my surgical pathology. Maybe it will quiet once I have a full treatment plan. Hell, maybe it will never quiet and I will learn to live and thrive with it.

Anyhow wanted you to know you are not alone.

MDnowPatient

RainDew,

Thanks for the support. Hope you're feeling well so far.  It's difficult not to have concrete odds. I suppose you will know your stage shortly after the path from the surgery which may help some. 50 years ago women with advanced cancer likely didn't live into old age since the treatment options were inferior to today's. I am going to try and consciously focus my brain away from the thoughts of the unknown and towards the positives that I do know. We'll see if that works.  I am trying to appreciate everything that I do have in my life. 

Cammychris

hello I was DX in April with IDC Er+ pr- her2- I am also brca2+ I know it sucks especially having kids(6 kids all under 13) I have been trying to think of all the positive that has come out of this situation ex. Quitting smoking. If you ever need to talk I'm available. Just had mastectomy 5/15 and feel ok.!take care ((hugs)))

dancingdiva

Hi everyone, I'm sorry we're all here. I was justed diagnosed. 2 kids, 42. Couldn't it have waited till I was in my 50s?? i keep asking myself. We have to hold on to hope and that medicine has made progresses in these years to make us live to see our grandkids.

HomeMom

I have not seen one piece of evidence that ER+ BC mets in 20 years. Someone better warn msphil since she is on year 19. Do you guys have a link or something? That is scary!