Forum Discussion
arnlybub
8 years agoMember
Another Newbie with some questions
Hi there, I was diagnosed a month ago with Invasive Ductal Carcinoma in my right breast following my first Breast Screen appointment. My lump is Grade 2, 19mm and positioned at 10 o'clock and 5cm from the nipple and I'm OR+, PR+ and HER2-. I'm booked in for a wide local incision next month followed by chemo (possibly) and radiation. I've spent the past month researching and have read all of this website and most of the forum posts (I've stayed away from Dr Google and stuck with reputable websites). I also have the My Journey kit.
I have a few questions if anyone can me help out:
1. My path report states that I have 'normal appearing IN's in axilla' - what does that mean?
2. I did ask my surgeon if I could have the whole breast off, but he said a lumpectomy was enough to start with and if needed they would go back and take some more if they didn't get clear margins. Is it normal to be refused a partial masectomy? I really would prefer to have only one surgery and have the whole thing off and be done with it.
3. My surgeon told me that I would probably have to have chemo, but a friend of a friend is just ahead of me on this trip with the same diagnosis and she doesn't have to have chemo .... why would it not be suggested for her? To be honest I'm more frightened of chemo then the cancer or surgery and would really rather not have it for a number of reasons including time off work.
4. When do the Breast Care Nurses come into the picture? I left a message for one on the day of my diagnosis and haven't heard back and emailed the other one 2 weeks ago and haven't had a response from her either. Am I jumping the gun and the don't make contact until surgery??
Thanks so much for any advice you can give me.
I have a few questions if anyone can me help out:
1. My path report states that I have 'normal appearing IN's in axilla' - what does that mean?
2. I did ask my surgeon if I could have the whole breast off, but he said a lumpectomy was enough to start with and if needed they would go back and take some more if they didn't get clear margins. Is it normal to be refused a partial masectomy? I really would prefer to have only one surgery and have the whole thing off and be done with it.
3. My surgeon told me that I would probably have to have chemo, but a friend of a friend is just ahead of me on this trip with the same diagnosis and she doesn't have to have chemo .... why would it not be suggested for her? To be honest I'm more frightened of chemo then the cancer or surgery and would really rather not have it for a number of reasons including time off work.
4. When do the Breast Care Nurses come into the picture? I left a message for one on the day of my diagnosis and haven't heard back and emailed the other one 2 weeks ago and haven't had a response from her either. Am I jumping the gun and the don't make contact until surgery??
Thanks so much for any advice you can give me.
19 Replies
- kmakmMemberGiven you are ER+, PR+ and HER2-, at the end of your active treatment you'll probably be prescribed hormone therapy. If you're pre-menopausal it will be Tamoxifen, if you're post-menopausal it will be an aromatase inhibitor (AI). Your cancer loves estrogen & progesterone and these pills interfere with its supply in case any recurrences try to grow anywhere in your body. My breast surgeon said this was a good thing as these therapies are generally very effective.
- primekMemberThe + in related means how much it reacts. ..so it is very positive progesterone. Yes the ki67 would be reason for chemo suggested. They will recheck your pathology again after surgery as a larger sample. My tumor grade was 2 on biopsy and 3 on the removal. They do suggest keeping tbe breast. But you can have future conversations after surgery if unhappy with the result or decision . You may need surgery on the other breast to rebalance after. But you may not.
- arnlybubMemberWow - coincidence?? The Breast care nurse called me late this afternoon to book in to see me after my pre admission clinic next week!
Re Ki67 I was told by my surgeon that values over 30% mean that many cells are dividing quickly. Also my PR is 95% = 3+ and the OR is 90% which is between 2+ and 3+. What do these actually mean?
Man, what a massively steep learning curve we go on at the start of this.
Thanks everyone x - duxx1234Member@kezmusic I’ve not heard of Ki67 either! Now, do I have the courage to ask my Oncologist what mine was? Maybe with only 6 chemo treatments left, I might leave it.
- kmakmMember@kezmusc Below ten is low, 10 - 20 is moderate, above 20 is high. My breast care surgeon said it could be described as a poor man's oncotype test. Useful if you're in a grey area when it comes to doing chemo or not. Mine was 18 which my surgeon said put me in a grey area.
- Kiwi_AngelMember@kezmusc I think they think below 10 is considered low and mine was about 13 or 15 so I was in that grey area.
- SisterMemberIt's indicator of aggressiveness of the tumour - the lower the number, the less aggressive.
- kezmuscMemberWhat is a Ki67? No one ever mentioned that or I have forgotten. Which could be quite possibel. I'll go look at the path again.
- SoldierCrabMember
Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet.
It can be a a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time.
The what and how thread.
http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1
Breast Care Nurses
https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx
My Journey Kits and other resources.
https://www.bcna.org.au/resources/
BCNA Helpline 1800 500 258
If you have any questions, concerns or require any further information or support please call 1800 500 258. The Helpline is open Monday, Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.
How to understand your pathology reports
https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html - SisterMemberBoth of those things - Ki67 and age - are likely to influence the recommendation for chemo @arnlybub.
The diagnosis is such a shock, isn't it. You'll find lots of support and definitely some laughter as well, here. Glad to hear that you've got a great network, too.