Feeling confused

Thanks Chris it's the triple negative bit that I've been reading up on and it says that chemo is the best treatment after surgery for the best outcome,that's the bit that worries me xxx

Hi Natalie

i had DCIS also, a 4.5 cm area removed but no clear margins, er/pr +

i had no lymph involvement, and had a bilateral mastectomy.

if you have a mastectomy, radiation is not normally required and chemo is not normally required for DCIS.

you would need ongoing monitoring I.e regular mammogram on the other side.  The confusing thing with DCIS i found was that there are so many types and they have variable characteristics.

if you are unsure get a copy of your pathology report which will identify all the elements of your DCIS and ask your Dr to explain it to you.

while you still have questions keep asking

hugs

chrisxx

Thanks Tracey xxx

Hi Karen I'm seeing my bc nurse tomorrow at 1,she has asked me to bring my histology report along too.realised that all I have is the letter the surgeon sent to my gp,I'm really not at all impressed as the surgeon made such a big deal to me about having all my paperwork but never gave it to me??hopefully my nurse can put my mind at ease or suggest another person to see for a second opinion 

thanks for replying xx

Hi Natalie

Definitely get another opinion. If nothing else it will put your mind at ease. I finished my treatment a month ago after 14 months and realised that I had the diagnosis wrong the whole time. After re-reading my results, and being somewhat more educated, I have realised that I had IDC grade 3 stage 1 hormone - HER 2+.  I thought I had DCIS stage 0. I had 3 tumours 20mm, 8mm and 3mm with no lymph node involvement. I had 5 months chemo, 33 radiotherapy treatments and 12 months herceptin. I was told without treatment, I had a 50% chance of reoccurrence. With treatment that reduced to 10%. 

Write down all of the questions you have and get the onc to explain it all to you. If necessary make an appointment to go and see them. Take someone with you who can perhaps help to understand it all after the appointment. Good luck. Karen xox

Hi yep if you are so unsure a second opinon is the way to go. Robyn is right every bc is different, take care and good luckxx

Thanks Robyn,

I'm just concerned on the grade and size and that it was hormone negative so will get second opinion ??????xxxx

Thanks for all your replies,I just spoke with my counsellor who is going to get my bc nurse to call me. I really want a second opinion because of the size of the tumour and the grade of it. I also had never met with an onc so just feel as though I have been rushed through everything and don't want to take any chances,my surgeon has made me feel as though I should already know everything and referred me straight to his wife who is doing my reconstruction and mastectomy on left side at the same time.all of this has happened in the last ten weeks so very confusing xxx

Hi Natalie,

Yes I can understand confusion with bc treatment, as so many tumours are different and require different treatment.  I agree with an earlier comment and go with your gut instinct and get another opinion.  Ask lots of questions.

My bc was hormone receptor positive, grade 2. After having a lumpectomy, it was a mucinous tumour (jelly like) 40mm, very irregular with DCIS in the margins.  After a second excision was unsuccessful, I had a mastectomy.  The full breast pathology showed a second smaller tumour hiding as well.

My medical oncologist recommended chemo based on the initial size of the tumour.  There were micomets in the sentinel node biopsy (which doesn't change treatment) Radiation oncologist recommended rads based on the fact there were two tumours.

During the month of May, when I was in and out of hospital, I remember being really upset and confused,  I had a second consult with a different surgeon and spoke to other family/friend surgeons to see if I was on the 'right track'.  Having a discussion/consult with someone else does hurt.

Hope you're recovering well from your surgery.

Karen xx 

Hi Natalie

i also was diagnosed with triple negative in Dec last year. I had a 2.3 cm grade 3 with a 4 cm area of pre cancer. Mine had also gone into 3 nodes ( micronets in two of them). I had lumpectomy followed by chemo and will be having a mastectomy next week. Apparently I won't need radiotherapy because I , am having a mastectomy. 

Your tumour was larger but confined to the breast and I guess that's why they don't see the need for chemo. Once it is in the nodes chemo is also used to mop up any stray cells that are probably circulating. But ! I would ask about this as I totally understand the need to attack this disease and leave no stone unturned. A second opinion could bring you peace of mind.

Have you found your way to the triple negative group here? If you go through it there are lots of informative posts. Also if you look up "triple negative foundation "it has lots of up to date info for us triple neg. Stay away from Dr Google though- lots of doom and gloom re triple eg which is lazy journalism and not reflective of up to date stats and treatment.

Lisa