Just Diagnosed...huge tumor :(

leecy5

Grade 3, IDC, waiting to see if its her+ or not, tumor is 14cm.

I was misdiagnosed a year ago w galactoceles.



Im a 38 year old mom of 5...my treatment plan is chemo - bilateral mastectomy - radiation.



Dr says i cant do reconstruction till after radiation. I feel like my story gets worse by the day.



Please tell me there are others w similar stories. Im surrounded by people w stage 1 cancers that are 60 years old that want to share their stories w me...,

Momine

Leecy, I am so sorry. Quite the rollercoaster, isn't it? I can't claim to be in your shoes, since I was ten years older when DXed.

The first month was horrific, then somehow it got better. Please ask for some xanax or similar if you think it would help you. This is not the time for a stiff upper lip or pride.

I was also told no recon for a while (2 years). At first it freaked me a little, but now I am really fine with it and not planning to put myself through any more surgery and pain for the sake of fake boobs.

We are here for you.

KerryMac

Hi there - I was misdiagnosed with a galactoceles too! Ended up with a 7cm tumour and 6+ lymph nodes. Well, that was over 4 years ago now and I am doing great.

This time you are in now is the worst. I felt like I was in some crazy nightmare, especially as I had been walking around with a known lump for all that time, thinking it was, in the words of my Dr. "nothing to worry about". That made the whole thing harder somehow, knowing I was in a worse situation than I should have been.

Once you get started in treatment you will feel a bit more in control.

My kids were 2 and 4 when I was dx - they are now 7 and 9 and have no real memories of when I was going through chemo.

Try not to get ahead of yourself too much, take things day by day, it really will all work out!

Feel free to pm me if you want to chat.

Moderators

Hi Leecy,

We're so sorry to hear of your diagnosis, but you've definitely found the right place!

If you're looking to discuss with others in your age group, there's also a Young Women with Breast Cancer forum that could be helpful.

Hope this helps!

--The Mods

sbelizabeth

Hi, Leecy.  My story is a little different, but the steps were the same as yours.  I had a lumpectomy, then another open biopsy and port placement, chemo, mastectomy, rads, more chemo.  Now I'm in the hiatus until my DIEP, which will be about a year after my unilateral mx.  My hair is back in a curly explosion and I'm feeling great.

I know what you mean about being surrounded by lower stage ladies.  I once said to my husband, "I wish I could just talk to someone whose cancer was as bad as mine."  He said, "My cancer was as bad as yours."  God bless him.

I'm sorry you're in the toughest period right now, when you wake up, go to sleep, and every minute of the day find yourself thinking about breast cancer.  It will get better. 

I agree with Momine, some xanax or ativan to take the edge off when the panic bubbles up is very helpful.  Ask your medical oncologist about it. 

You are not alone.  There are plenty of us here for you!  Blessings--

beth1965

Hi Leecy- i am glad you found your way here as this site has been an amazing help too me. Everyone here helps wth questions you have,emotional support and long distance hugs when needed.

I had a 9.2 cm tumor in breast and 2 more tumors in my lymph nodes and 17 canacerous nodes which is alot of cancer to start with i was terrified. That is over a year ago and i am still kicking around. I am in my 40's. I did surgery(BMX) chemo and rads now hormonal.

They told me 3 years before reconstruction which sounded like eternity. But treatment takes quite awhile and is hard on your body so maybe a bit of a wait is good so you can grow stronger first. They now changed my recon to 2 years if i stay healthy. I have prostetic's that look okay though and am fine with them. I spend alot of time just natural as it is more comfy.

Hugs to you

clariceak

This is probably the toughest time.  You'll feel much better once you have a treatment plan in place, and this board is the best place to find women who truly understand.  There are many young mothers on the board, in fact it is alarming how many young women are being diagnosed.

Here's my standard advice for the newly diagnosed.

Don't google.  The information on the internet is scary and outdated and don't reflect the latest treatments.

As others have state, it may be helpful to take prescription drugs to relieve the anxiety you will feel during this very stressful time.  I refer to it as the "cancer radio" and it was always on during the first few months. I found anti-anxiety drugs helped break the cycle.

There is a benefit to being Stage III.  Lower stage women wrestle with decisions on whether to have chemo, how much, or do radiation.  The treatment will be as aggressive as possible to stop cancer now.  It will be rough but you will make it through.

Celtic_Spirit

Leecy, I was 48 when diagnosed, and I had multiple tumors in both breasts...including an 11cm lump in my left breast. Also 9 positive nodes. Scary stuff! Did bmx, chemo, radiation, four rounds of zometa, and tamoxifen/now arimidex. I'm now rapidly approaching my five-year anniversary! I have aches and pains from the arimidex, but I don't let them keep me from having a full life. In fact, the past five years have been absolutely amazing!

Keep your chin up, know that it's going to be rough at times, take xanax if your anxiety gets out of control, and look forward to that day when treatment is over and you can get on with your life (and that day WILL come!).

YATCOMW

Leecy....

Mine was 8cm and 17+ nodes positive.....it will be 9 years in May.

It is sooooo overwhelming in the beginning but it will get easier as you find others like you that are doing fine.

All these ladies get it.

Jacqueline

leecy5

Praise God that I found this board. I actually took myself to my pcp this morning and asked for ativan even bf reading your replies. I havent slept more than two hours a night since the first biopsy. I look fwd to becoming part of your community!

Btw, had bone scan today - ALL CLEAR!!!

krcll

I know it feels like the bad messages never stop when you are stage III, but I promise that they do. And when they do and when you start treatment, things really do get better. Hard to believe, but true. I remember being so devastated to find out that I was one node from being stage IIIc. I really felt like I was the only one in the world of "thank goodness it wasn't in the nodes". We are lots of women many years out that are doing great. Almost 4 years for me! I'm doing great and so will you!

fredntan

Thats wonderful news.

I waited 5 months after txs for my diep. my sx at home said he wanted me to wait year. at 4 months I found out the Nola and PRMA will do sx on you at 4 months post rads. I had my diep at PRMA in San Antonio. It was a breeze compared to my first terror induced mastectomy. this was a healing sx for me

jennyboog

Hi Leecy, sorry you have had to join us here.  I was 34, a mom and had a huge tumor as well.  Treatment isn't easy but definetly managable with the help of meds for side effects.  It sounds like you're on the same tx plan as me except I didn't do recon.  You've come to the right place, this a great site it has lots of info and support.  Come here whenever you need us...I sure did.  Once tx starts you will feel a bit more in control.  Sending you hugs.

Letlet

Yay for the clear bone scan! My tumor was 3.7 not as big as yours but i had 6 positive nodes making me stage IIIB...This month will be two years from my last chemo treatment. My daughter was 5 when I was diagnosed, this April she will be 8! 

I know you feel that the roof collapsed on you, we all did. We are here to support you. When I was diagnosed I watched this DVD with this woman that said, "one day you will wake up and cancer won't be the first thing that comes to mind"! I cried because I couldn't believe it. But it will happen

You will be in for a very very tough year but we will be here for you. One foot in front of the other. Look at your treatments as stages to make it easier when you complete each milestone, instead of trying to fast forward to the end of the year. I was 31 and I will turn 34 this June...breathe, you can do this!

hopefour

Leecy welcome and so glad you found us as we all know how you are feeling! It's overwhelming and fear is always just a thought away! Being a mom of five will keep you going through treatment. I set goals for each day in trying to keep life as normal as possible for my kids through treatment. This for me gave me strength other than just focusing on my treatment( but do take care of you and allow them to help out lots)!! You will get to the other side of treatment..I love having my curly hair now and feeling like me again and you will too!!

lovujja

Hi Leecy,

Sorry to hear that you have to go through difficult time. I was in your shoese last year christmas time. I went throught same treatment plan that you are going to have. Looking back, now i feel way better. I didn't sleep for almost a month and when i got ativan boy i felt so good. Take every day as a new day. When you are on chemo make sure to stay healthy-prevent from getting around sick people and stay away from crowd. Make sure to eat enough protein and iron and maintain your liver health. I ate lots of vegetables and drank a lot of juice and water. I still can't eat some food because i ate those during chemo. I couldn't eat some food after couple of chemo, i didn't like the taste. I will encourage you to talk to councelor where you can talk your fear and anxieties. I encourage you to listen music that calms you down and also do meditation.

stay calm and make a determination you have to be there for your kids. You are on my prayers.

beth1965

Great news about the bone scan Leecy- i am happy for you

lostinmo

Leecy-sorry you are joining us. Great news on the bone scan!  I had the chemo, surgery then rads plan as well. I have a 14 yr old and just turned 46. I finished my treatments in Oct and now back to enjoying life and trying not to dwell on what ifs. You will get there too. Sending prayers and hugs!

pupfoster1

Stick w/us Stage III sisters you'll get any advice you want.  And they are correct about waiting till after rads before reconstruction as the radiation can shrink and change your skin.  They will probably put expanders in during surgery which you get filled every so often with saline until you are healed enough and large enough to do the recon.  I had no pain at all during my fills and really didn't need many as I had large breasts before and had a lot of skin to work with.

Take it one day at a time, TRY not to research TOO much until you know EXACTLY what you are dealing with.  Dr. Google can be a blessing AND a curse at times.  And DEFINITELY ask away here.  Nothing is off limits to us!

Take care,

Sharon

TectonicShift

leecy5, where are you located? What kind of hospital or cancer center are you at? If you are interested in doing any clinical trials, it's important to identify which one and where very early on. Many trials make you start right at the start of treatment.

Congrats on the clean bone scan! Wonderful news!

Josiekat

Hey! I too was 38 at diagnosis, with small kids. I am a year out from diagnosis and I feel great. I promise, it will keep getting easier, as the plan gets put into action! Come to this board often, they helped me through so much. Xoxo

leecy5

I live in VA. Plan to talk to my dr about trials on Wednesday.

kar123

Hi Leecy,

I was diagnosed at 40.  Two small children 10yrs and 6yrs at my time of diagnosis.  I also had chemo first, surgery and then rads.  I was misdiagnosed for several months with fibrocystic disease.  My cancer didn't show up on any scans.  Still dealing with that anger.  Hang in there,  as these ladies said, this is the worst part of the whole ordeal.  Once you get started with treatment, you feel like you are doing something and some of the anxiety lifts.  There are very good drugs that help with the residual anxiety .  Depending on the type of recon you choose, part of it can be started right away.  If you are going with implants, expanders can be placed at the time of mastectomy and filled until radiation starts.  Once radiation is completed, they wait a little while to make sure your skin is healed before they either finish the fills or do the exchange surgery.  The whole process for me from diagnosis to implant exchange was about a year.  It's a long haul, but you can do it!  I'm 2 1/2 years from diagnosis and feeling pretty good.  The AI's I'm one have caused some aches and pains, but nothing earth shattering, just really, really annoying.  Check out the 5+ year survivor thread in this group.  It really helped me through.  This is a wonderful site with really great women who have been there done that!

maryannecb

Misdiagnosed with fibrocystic disease initially as well...9cm 2 nodes...7 1/2 years ago. I understand your anger and disappointment...also makes it hard to believe tests now.

Did the works..chemo rads herceptin zometa.

Waited 3 years for recon..my decision...wanted to land on my feet first ,then go from there.

You can do this

Elizabeth1959

I was 51 when I was diagnosed with a 16 cm tumor.  I also couldn't relatate to people with smaller tumors.  Not only did they require less treatment, but their prognosis seemed so much better than mine.  I didn't think they experienced the same depth of fear that I was experiencing.  The year of treatment was brutal and looking back, it feels like a nightmare.  Never the less, I did get through it and managed to work much of the time.  (I have my own business and have 7 employees who depend on me) 

I am so glad your bone scan was clear.  That of course is a game changer.

The only thing I would have done differently was have tissue expanders placed after mastectomy.  No one discussed it with me.  I am going to have bilateral diep next month and surgeon is worried about having enough skin.

I still feel most at home on stage III boards.  We get it.

Elizabeth

leecy5

Finding enough skin is what im told by plastic surgeon will be my biggest challenge too. waiting to talk to radiation oncology about whether or not i can do tissue expanders at mastectomy???

leecy5

Almy - where are u in the process?? Have u had surgery yet?

Laurie09

Leecy, I'm sorry you have to joint this group, but you'll find a lot of support here!

I had a unilateral mastectomy and I did have a tissue expander at the time of my mastectomy.  Then they did the tissue expansion while I was healing, then I had radiation therapy, then reconstruction.  Hopfully you can do the same.  

I'm going to be 4 years out in 2 days!  Good luck to you!

InspiredbyDolce

Re:  Treatment for TNBC:  It's my understanding that having the chemo prior to surgery is not a better or a worse option than that of chemo after surgery.  There was a post on here that mentioned chemo before surgery was better.  

When I researched this, the doctors were stating that if someone had chemo before surgery (neoadjuvant) and they received a pathological complete response (pCR) than their chances of survival were better than those patients who did not receive a pCR.  This is referenced because chemo before surgery shows exactly the response from chemo, but chemo after surgery can't gauge if their was a pCR, because there is theoretically no tumor present, to tell if the patient has achieved a response.  

But whether a patient has chemo before or after surgery is not the determinant, the determinant is whether the patient achieves a complete response vs the patient who had residual invasive disease.

Here is the information:

Overall, patients with breast cancer who experience a pathologic complete response (pCR) with neoadjuvant chemotherapy (NACT) have signifi cant improvements in both disease-free survival (HR 0.48, 95% CI: 0.37-0.63) and overall survival (HR 0.48, 95% CI: 0.33-0.69) compared with patients with residual invasive disease.

InspiredbyDolce

Laurie, Congrats on being 4 years out!  You go celebrate big tomorrow!  So happy to see your great news!  

Anonymous

Leecy, it definitely for me felt like I fell off a cliff somewhere when dx'd.  I had 6+ cm tumor which was only thought to be 2 cm on MRI and PET.  So imagine the surprise when the surgery report came back!! I had bilateral mast, chemo & 33 rads including a boost.  My plastic surgeon said the same thing - not to do reconstruction until after rads.  I waited 2 years out then had the DIEP surgery.  Even though I wasn't really overweight, he wanted me to lose 10 lbs to make the belly fat less, for the reason the smaller proportion of fat they have to dissect, the better.  Turned out I had more than enough belly tissue to do both sides. But the radiated side the tissue depth is horrible, less than 1/8".  I still am glad I did the reconstruction, but I may choose to do a second revision to even up.