Thanks so much Angie
Can I ask what Mammo 50 is?
So happy for you experiencing such happy things since your diagnosis. Lovely news start ? xxx
Hi Getorade,
I don’t live on this website the way I used to, but just saw you’re post and thought you might like to know about my mum. She was diagnosed with BC way back in 1982 at the age of 47. She will be 83 years young in April next year, so that’s 35 years and still going strong! In those days there was no differentiation of bc types, and she wasn’t given any chemo or rads, just surgery. I myself was diagnosed with stage 2 grade 2 invasive lobular cancer in 2013 at the age of 50. I had surgery, chemo and rads and continue to do well, so I hope that gives you some encouragement. Whatever your treatment plan turns out to be, I wish you all the best. Take care. Ann xx
Thanks so much Ann for sharing this. It’s people like you that we can all benefit from hearing from and I’m really grateful you took the time to come on to the forum.
Amazing regarding your mum. What a strong lady. It just goes to show every cancer is so different, and you yourself doing so well too. So lovely to read. Indeed I feel there is hope.
I’ve had lovely ladies like yourself take the time to respond and calm me down. I go for my lumpectomy results today although I’ve already been told I have no node involvement and they got a good clear margin. I’ll find out the next steps at 3pm ?
All the very best.
Mandy xxx
Hi all,
My results are that they got a clear margin with 1mm to spare. The DCIS (35mm) was 1mm away from the edge of the tissue they took out. They also found an 8mm tumour which is IDC invasive which has also come out. The lymph nodes were clear.
They said the call from the oncologist yesterday who asked me for permission to test my tumour was asking to do an oncotyping test. It is something they do in America to determine whether or not they are over treating people. It will tell them if I am in the high risk or low risk group of it coming back. If I am in the high risk group then I will also be give a certain type of chemo. If I am in the low risk group, I will only have hormone therapy and radiotherapy. Either way I will have radiotherapy but only after I have heeled. I have to also wait the the results of my HER2 to come back.
Next steps are I see the oncologist for the result of my tumor test and after that either I have chemo or start hormone therapy.
They also said when my surgeon is back from hols she may want to do another op to get a bigger margin but I won’t know until I speak to her.
Xxx
Oh and the grade was 2.
Xxx
Hi Jo
Thank you. I’m very happy with the result and I’m happy to have the further test too. I’m hoping I don’t need chemo of I can help it, I really would rather not.
I’m also hoping I’m not HER2… There I go again running away with myself. My sister had myloema and had chemo and told me how horrible it is and how it really does just poison our bodies. She said she would never have it again.
I would why we can’t just have Herceptin without the chemo? Is this just a money making thing putting the two together I wonder ?.
Xxx
Hi G,
It’s to do with treatment protocols, as herceptin is only licensed to be given with chemo.
ann x
Hi Ann
That’s interesting. So nothing to do with it won’t work without chemo?
It’s crazy to think chemo is given where no cancer exists only because Herceptin is only licenced with it. Sounds like a money making thing to me.
Does anyone know of somebody who is HER2+ refusing chemo? Just not sure how chemo is needed if the cancer is not there. My understanding is that chemo kills or shrinks cancer cells and not even all. What if the cancer has been removed? How does chemo prevent cancer coming back? Surely that’s what Herceptin does for HER2 + and also hormone therapy?
Xxx
We are all guilty of putting 2+2 together and coming up with 5 Mandy, it’s the frustration of not knowing it sends our brains in to over drive! HER2 results seem to take forever now, I don’t remember waiting for mine, I’m Certain I had them the week after biopsy, maybe I didn’t as I had no clue about it all back then, could write a trilogy now!! ?
Herceptin as Ann says is only licensed for use with Chemo at the minute, I have read that it was originally only given to ladies with secondary breast cancer who would have been having Chemo so likely it’s never been tested fully on its own, I don’t really know a huge amount about the reasoning behind it but I do know its a very effective treatment if you should need it.
None of us want chemo and I was fortunate not to need it and I totally understand your wish not have it so fingers crossed you don’t need to go down that road but we have very active Chemo threads here with many ladies at various stages and they will carry you through if need be, you will never be on your own here no matter what treatment you have ?
Makes sense Jobey. I guess if I am HER2+ then I have no choice but to have chemo. I was just wondering why Herceptin can’t be used without chemo but it sounds to me they are doing too different things. Chemo to kill rogue cells and Herceptin to stop aggressive cancer growing again. This means those who are HER2- who don’t have chemo may also have rogue cells but I’m guessing it’s because they are not aggressive and the hormone therapy deals with it.
Xxx
Thanks Mai, it’s so true. I’m attempting to make sense of it all with all the answers now.
I’m looking forward to speaking with my oncologist very soon.
Hope you are feeling very well.
Mandy xxx
Morning Angie
Thanks so much. It seems you and I have had a similar diagnosis. I had IDC stage 1 grade 2 and DCIS. Still waiting on my HER2. I’m guessing you were HER2- ?
Hope you are getting along OK with your hormone treatment. Can I ask what they have put you on?
I’m glad they are doing the oncology test on my tumour. This way I’ll know for sure what’s best. Did you have the test done? Xxx
That’s great Angie, it looks like you’ve had all that is necessarily
How are you doing on Anastrozole? I think this is what they are prescribing me.
The test I have been put forward for is this breastcancer.org/symptoms/testing/types/oncotype_dx
Thanks Angie
The oncotype result takes about 2 weeks. I haven’t been started on hormone treatment yet and I don’t have radiotherapy until my oncotype results come back in case I need chemo first.
Mandy xxx
Hi Fezzy
Thanks for getting in touch.
I’m still waiting for my HER2 result to come back. The confusion for me is why the oncologist contacted me about doing oncotyping on me if they don’t know my HER2 result. If the result is positive then I would need to have chemo anyway. I asked him if it had come back and he said they are still waiting. I’m not sure though otherwise why send it off?! Its been about 4 weeks. I’m glad of the test nevertheless but HER2 + is aggressive so it trumps the oncotyping test score I think.
Sounds like you are not too dissimilar to me. I’m hoping for a low score and HER2- then I can get on with the hormone treatment which I am told it may be the same as what you are on.
I saw a stand in doctor for my results. Wasn’t impressed with her one bit she was very harsh and when I said I suffer with psoriatic arthritis so can that please be considered when putting me on hormone therapy and she replied they are all the same. Not very helpful ?
Mandy xxx
Hi Fezzy
My cancer was ER+ grade 2. The HER2 result is the one that hasn’t come back. For the oncotyping test I should be HER2- to qualify for the test but I don’t have that back yet so I don’t know how I qualify for the test without knowing this ?
Good to hear it’s not so bad on your hormone treatment, hoping mine will be OK too. I’ve psoriatic arthritis in my fingers so I’m hoping they won’t be affected too much more than they are.
Yes waiting is the worst bit. ?
Mandy xxx
Hiyer, of course loads of people never have a recurrence and go on with their long full and happy life! My Aunt is one of those, she had her mastectomy 35 years ago, just fine, nothing wrong. I know of about 10 people in my real life who are the same! Personally, I had BC 2 1/2 years ago, and am now discharged from needing any more follow-up surgeon appointments. The ladies on the telephone helpline here all had BC donkey’s years ago, some of them. Hope this helps a bit to know it is a very effectively treatable cancer type.
Hi, my HER2 came back negative and my oncotype score only 15 so low risk of recurrence meaning no chemo. I’m pleased about that.
I have to have another op for a clearer margin after which I have radiotherapy. I started on Anastrozole yesterday. Hoping for not too many side effects.
Hope you are doing well? Xxx
Hi Angie
My second op is on the 17th of December.
They also have me the Teva brand. Took my first one today and had minor hot flushes but I’m sure they’ll be shot more to come over the coming months.
I’ll have everything crossed for you for your 5th year mammogram. Mammograms scare me now but I’m sure positive thoughts go a long way.
If Teva works for me I’ll stick with it.
Have a lovely Christmas and let me know how your mammogram goes.
Sending hugs xxx
Do you think tomorrow I’ll be killed by a bus, or hit by lightening? If not then why are you worrying about what’s going to happen about your cancer in maybe 5 years time. None of us know what the future holds for us, we just got to live our lives to the max.