Understanding Ki67 index

HannahM

Hello, I was diagnosed with breast cancer in October and had single mastectomy on 20/11. It came back as Stage 2A, HR+ HER- , grade 3, 2.7cm, no lymph node involvement, clear margins. Surgeon initially told me I wouldn’t require chemo but I saw the oncologist on Monday and she has advised otherwise. Today I was further confused as she told me that they did another test on my tissue and my Ki67 index was 1-2%. Based on this she is still recommending chemo but only 3/4 months rather than 5/6 months. How can it be grade 3 and have such a low Ki67 index? It only occurred to me as odd after I’d spoken to the oncologist. Has anyone experienced this?

Julez1958

Hi @HannahM
I was stage 2,grade2 with a low Ki67 ( 10 %).
The grade, stage and Ki67 are all different things.
My breast cancer surgeon who is very  experienced said “ the higher the number ( ie:grade,stage or ki67 score,) the  more we should worry”.
He also said ( about stage and grade) “ 1 is a choirboy and 3 is a bikie” - you would generally be more worried about the bikie but exceptions abound”.
There are other factors too and generally a patient will be discussed by a multi disciplinary team ( surgeon, oncologist, radiation oncologist among others) before a course of treatment is recommended.
So it’s hard to just compare yourself with another patient without knowing the full story.
But generally the higher the Ki67 score, stage and grade  the  more likely they will be to “ throw everything at it” , subject to any other overriding factors.
Also when an oncologist gives you percentages it also depends on your own “ risk appetite”.
I always ask my medical professionals “ what would you do if you were me” ( or if they are male , “ if it was your mum or grand mum “?).
But the decision is yours in the end.
Do you have a breast care nurse?
I have found mine very good at explaining stuff to me.
Take care.🌺

HannahM

Thank you @Julez1958
Yes my case was considered by a multi-disciplinary team yesterday and the oncologist contacted me to tell me of the reduced chemo regime based on my very low ki67. We also discussed the EndoPredict test so I have decided to have that as well to inform a final decision and she has ‘pencilled me in’ for chemo in early January. I was ok with the idea of surgery but I have to admit that chemo and its long list of serious side effects scares the absolute hell out of me. I’m a single
parent and just don’t know how I’m going to manage it all. I don’t t have a breast cancer nurse yet because I had the surgery in the private system and now moving over to public, so will hopefully have one soon.

Tinks

dear Hannah, the ki 67 test is a measure of how rapidly the tumor cell is dividing. With a special stain, a pathologist counts cancer cells that  are in the active process of dividing. Like you I had a grade 3 in pathological score which looks at different aspects such as whether the cancer cells appear to be getting into blood vessels or lymphatic vessels, but I also fortunately had a low ki67 score. However, in my own circumstance, this did not result in a reduction of any treatment at all / we are all different and every little bit of information helps our treatment team to put together our unique profile and then work out. what’s the best process of treatment for each of us. Lots of love Tinks.

Katie46

Hi @HannahM, I had stage 2 grade 3 and 1 lymph node involved, 2cm lump IDC NST hormore positive. My ki67 was 30% my surgeon explain the higher ki67 score put me in the higher risk of reoccurance group, so it was another useful tool to help them decide what treatment I shoud have, but the grade was what they were more concerned about. I had chemo for six months, radiation, hormone blockers and I'm also taking abemaciclib for 2 years. 

I am also in Darwin, the whole care team have been great, I can't praise the Alan Walker Centre enough, I also had surgery privately and then moved across to public for chemo. 

The McGrath nurses here have been a great help, even though I was private initially they still answered my questions. You should contact them if you need to, they helped organise all the pre chemo tests I needed to get done. 

One of the unfortunate things about chemo is they really can't tell you how your body will react to it, it really is very personal. I found it manageable, I didn't get any of the really bad side effects, the worst for me was severe fatigue for about 4 days each cycle of AC chemo, and severe mouth ulcers at round 7 of paclitaxel. 

All the best with your ongoing journey. I'm happy to answer any Darwin specific questions if I can.

HannahM

Thanks for your reply @Katie46
I have heard great things about Alan Walker and I’m glad your experience with them was also positive.  I hope you are doing well now.

Abbydog

I'm sorry that you are going through this.
I just want to say, Chemo may not be as bad as you are imagining.
I didn't find it anything like how movies portray Chemo.
I had some side effects but all were manageable for me.
It is very individual, with no way to predict how you would be.
I had 4 doses of EC and 12 doses of Taxol. The only lasting side effect is mild peripheral neuropathy to my feet.
Also I recommend trying the Cold Cap, to prevent hair loss.
I used it with great results. The only down side for me was the extra time needed.
Consider using Income Protection Insurance, if you have it. Employees often have it included in their Superannuation.
All the best with which ever plan you go with.

koalalala

Hi all, 
newly diagnosed in November with HR+, HER2-, IDC, Stage 1b, grade 3, ki67 30%. This is my second diagnosis, with my first occurring in 2013 but it was TNBC. I’m also a BRCA2 mutant. I’ve had 2 surgeries to excise lump and try for clear margins. I have previously had a BMX with implant reconstruction. This cancer grew under the skin, in a tiny piece of breast material. I’ve been advised chemo is not necessary due to size of tumour (9mm), no node involvement, and I’m post menopausal (56yo). I’m taking anastrozole. Oncologist said chemo is ultimately up to me. If my tumour was 1-1.5cm then they’d advise chemo due to grade 3 & hi Ki67. I am finding it difficult to make a decision re chemo. I had TAC in 2013 and it was hell. It’ll mean time off work (I am single), and loss of income. My breast surgeon has also advised to have another mastectomy to remove my recon and as much skin as possible to reduce the risk of further recurrence. Recon in the future is not on the table. I’d love to hear from those who’ve had similar tumour size, grade etc and what treatment you had. 

Thanks 🙏🏻 

Abbydog

I am so sorry that you are going through this again. You had already done as much to get rid of your breast tissue.  I always feel sorry for the ladies who are given the choice for Chemo. That is a difficult decision. I just did what was recommended. That was Mastectomy, Chemo and RT. Almost 5 years ago. Do you have any Income Protection Insurance? Is it in your superannuation? Is this considered a new Primary Cancer? Sorry I am no help with your decision making. I feel for you. 

koalalala

Thanks Abby. Yes I do have income protection but as I’m mostly self employed, it’s not much, and there’s a 90 day wait to claim. And yes, this is considered a new primary cancer. I’m so undecided about chemo primarily because of the tumour size being the negating factor. If I’d left it another week to have it excised, and it continued to grow at the rate it did in the 4 days between biopsy and surgery, chemo would have been a given. I’ve had two oncologists say it’s ultimately my choice, but they don’t recommend it due to tumour size and my menopause status. I’ve never been one to question drs before but it just doesn’t sit right with me. If I choose to go ahead with chemo, it’ll be against my treating oncologists recommendations, although she has said she’ll support me whichever decision I make. 

Abbydog

Dear koalalala,
Because you said you were only 1mm from different advice, I would feel like throwing everything at the cancer.
My Chemo wasn't difficult for me. I still wouldn't welcome doing it again.If you do have Chemo again, maybe it won't be as bad. Perhaps the dosage is different and the drugs given with it are different.  The best news is that it is a Primary Cancer, not metastasis and not now stage 4. I hope this isn't a terrible thing to say. But I presume that is a much better prognosis.