Newly Diagnosed IDC ER-/PR- Hep2+ in my 30's!

leanne1980

Hi all,

I have just been diagnosed with IDC, Grade 1, ER-/PR- Hep2+ after 6 months of bugging my GP's for why I had hard tissue in my right breast. 

I had a mammogram and 2 ultrasounds and it wasn't until the specialist said that he was going to biopsy randomly as there is not definite 'lump' that it was found out!

 Have had a MRI breast scan and am waiting on appts for a CT and Bone scan before I see my surgeon/specialist on the 16th July 2012. Waiting is horrible!! From what I took in when he told me he said I will need surgery, maybe reconstruction, chemo and herceptin...

Chemo is no stranger to me.. This March was 5 years remission for me with Acute Lymphoblastic Leukaemia (ALL) - that was bad enough!! So I kind of have and idea of what to expect except for the surgery part... you can't see leukaemia.. but the breast cancer... well, I am very aware of it now and just want it gone!

 Have had a look through this forum but can't find many topics on this particular kind??

Are there any like-diagnosed people!!?? How are you going? Anything I should be aware of, or ask to docs?

Am only 31, and was contemplating trying for kids with my husband (who was there throughout the first lot!) after a trip to South America.... well, that's now on hold!!

suemed8749

Hi leanne - So sorry that you have received this diagnosis at such a young age. bc.org is a wonderful resource; I'm glad you found it.

I was dx with ER-/PR- Her2+ bc in January 2008. After two lumpectomies that did not get clean margins, I had a unilateral mastectomy then six treatments of Taxol/Carboplatin/Herceptin. Then I continued the Herceptin every 3 weeks for a total of 18.

Many new treatments for Her2+ cancer are currently in the works. If you go to the home page and search, you will see many very promising articles regarding this type. Four years since chemo, I am doing well.

There is a whole forum dedicated to Her2+ - check it out.

Sending you hugs and encouragement - Sue

leanne1980

Thanks for the encouragement Sue! It's all new territory for me!

I have had peoples 'helpful advice' coming from all angles, but wanted to hear about it from people with the same dx.  I have 2 close friends at work (older than me, 2 diff type of BC) who put me onto this site and said to avoid all others!

emilybrooke

Leanne - I recently joined the chat boards because too am 31 years old  and was diagnosed on May 24th 2012 with stage I invasive IDC. I am not sure of the grade but I tested ER/PR+ with no family history and BRCA-.  When I met with the surgeon it seemed as though they were steering me in the direction of a lumpectomy, radiation and tamoxifen. However, she shared that the chance of recurrence after five years was between 7-10%. It scared me to death that I more than likely would be diagnosed again during my lifetime. I decided to have a double mastectomy with reconstructive surgery - June 20th my surgery took place. During the surgery, and through the dye mapping lymph node test, the surgeon found macroscoptic cancer cells in one of my sentinel lymph nodes but no traces in any of the ten axillary lymph nodes that she removed. Because of this I will have undergo some kind of chemo treatment.

 I am a little over two weeks post surgery and feeling good. The pain has diminshed and now I feel sore. The emotional component comes in waves - sometimes I am happy and other times I feel sorry for myself and wonder why my body betrayed me. What I do know is in the end, I WILL be okay.

I hope my story helps - being 31 with breast cancer is something I never imagined - yours has helped me feel less alone

leanne1980

Hi EmilyBrooke,

Great to hear from a like-aged person going through a similar situation. I still don't know what the plan of attack is until Monday 16th. I have been having lots of tests - MRI, Bone Scan and CT. The MRI showed a dark area in my other breast and had another biopsy, still awaiting results. My feelings about BC are similar to yours - if there is any risk I think I would want both gone. After having had leukaemia and having those feelings of 'will it, won't it come back' for 5 years, I don't know if I want to go through that again!!

 Did you have reconstruction? I think they are planning on immediate implants when they do the masectomy. 

Happy to keep in touch with you! Either on here or by private message. 

Leanne

Abby20

Hi girls,

I was diagnosed July 20, 2012 with IDC and HER2+. It was one of my worse days ever. I am 36 years old and have 7 months old baby. Doc said that my cancer is small but the MRI shows another suspicious area that might be cancer. I am scheduled to do a MRI guided piobsy this Monday. Will keep you posted..Cheers 

leanne1980

Hi Abby,

Sorry to hear about your diagnosis! It is horrible to find out that you have cancer! (I've been there twice!) I am having a mastectomy on Thursday and in the other breast are 'suspicious tissue' that they want to check with an MRI hookwire biopsy at the same time as surgery. I won't know till 2 weeks later when the results come back as to if they have to take the other one off too. 

Are they suggesting a lumpectomy?  I guess it is all new at the moment and all the doctor stuff goes in one ear and out the other!  Feel free to private message or reply on here if it helps to talk. 

Good luck with the biopsy!

Leanne xo

Hart418

Hi LeAnn,

I was diagnosed in Oct 2011 with alomost exact same thing, I had my R breast removed, went thru 6 months of chemo, taking Arimadix and having to get 1 yr. of Herception infusions I am doing well, feel good, have not had any of the "weight gain". Working on reconstruction surgery, you will do great and I am here to be with you should you need a friend. melody

leanne1980

Hi Melody,

I'm glad you are doing well with your treatment! 

Did you have to have radiation at all? I think I will be doing that after my first lot of chemo? Haven't seen the oncologist yet, so I guess I will know more in a few weeks!

How old were you when you were diagnosed?

Good luck with your reconstruction - I am having immediate reconstruction with an implant that they pump up over time. Sounds odd, but I guess they know their stuff!

Leanne

Jaimieh

I was diagnosed 12/24/08 with er/pr - and her + bc. I had 6 rounds of TCH and 18 rounds of herceptin. Knock on wood I am still doing great. I have had a double mastectomy and have done two types of reconstruction. I you have any questions let me know I am happy to help.

emilybrooke

Hi Jaimieh! Thanks for joining in - it helps to have someone in the know about what to expect

leanne1980

Hi ladies,

I have just come home from hospital after having my mastectomy! I now have to wait 6 weeks for chemo...

Hope everyone else is doing well! xox

Leanne