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I have just been going over paperwork I had received from BCN after having left mastectomy. Can anyone help with the following
Invasive ductal carsinoma, breast cancer invasive, size 15mm within 75 mm if dcis, is there more than one area of breast cancer answer is yes.
Grade 3. Tested for Ki67 (what is this). Has all breast cancer been removed as far as you can tell answer yes, no signs of lymphoma vascular invasion, has it spread to lymph nodes andwer No.
No lymph nodes affected, is breast cancer hormone receptor positive and seer yes.
Is breast cancer HER2 positive (HER2+) answer Yes.
What does all of this mean I know I have been on before but after reading this realise I am not too sure. Any help would be appreciated. I was to have chemo then cancelled due to heart scan so on letrezole for 5 years and risedronate once a week again for 5 years. I thought I was doing well tired and sore bones, feeling sick a lot but that could be tablets.
If a BCN or someone who know what all this means can explain in idiots guide I would be very happy. Haha lol
Sorry you have had a bit of a wait for a reply, in hindsight this may have been better posting into the breast group :)
I'm not medically trained but from what I can make out is you had 2 areas of breast cancer 15mm invasive and 75mm dcis (it's not uncommon to find one hiding near the other)
Quote "Ki-67: Ki-67 is a protein in cells that increases as they prepare to divide into new cells. The more positive cells there are, the more quickly they are dividing and forming new cells. In breast cancer, a result of less than 10% is considered low, 10-20% borderline, and high if more than 20%" It isn't a detection tool but is part of the information they gather to work out your treatment plan.
Your mastectomy removed the cancer to a level where none can be detected and lymphoma vascular invasion (No) means there were no signs of spread into your lymph system or blood vessels.
Hormone receptor ER/PR+ positive yes, hence Letrozole (and bi-phosphonates) HER2+ yes which would normally mean chemo and herceptin but herceptin won't be given if your muga scan readings are too low (below 50) as it can weaken the heart muscles further.
Have they mentioned any alternatives ? Some HER2+ are treated with Pertuzumab (Perjeta ®) but I don't think you can have this without chemo either, also don't know if it can affect the heart in the same way.
You could ask about letrozole causing sickness in the breast group but does this sickness coincide with you taking the risedronate as it is meant to be taken with a large glass of water first thing in the morning as it is an acid and can upset the oesophagus ? and is recommended you stay upright for at least 30 mins afterwards.
J has been on Letrozole and weekly Alendronic acid (similar) for over 4 years now but also has 2 x daily Adcal+D3 too, no signs of nausea though ?
Hope this is of some help, G n' J
Sorry for late reply. I was emptying out my junk emails and found this from yourself will check them more from now on.
Nothing has been suggested in fact they seem to think it is all okay and only need mammogram in Dec so only one visit with oncologist and next not till next Jan or Feb.
I feel like I have been shoved aside as cancer not spread,even although. Have now had to have my wound asperated 7 times since my op in January.
I had an aspiration last Friday but dr had to do this as needed a scan as 7 times is not right the BCN says. I don't know where I am with them, or dr or oncologist.
Meant to say my muga scan was over 50 but my oncologist would not offer chemo as it was under 60 she said that was the limit needed. I think my muga was given wrongly. The girl who did it told me it was her first time on her own. I was laid down and my head rested on a pillow case no pillow in it. Then she turned me on my side a little bit where my head was not resting on anything, it was shaking and did the scan. But from what I have heard this is not what should have happened.
I do take a full glass of water with risedronate tablet and in the same day and time each week.
Thanks for your reply though
A lot depends on what your Muga Score actually was - Everyone's score will vary but I think anything between 50 and 75% is considered 'normal' if it was only 52 for instance that would be borderline but 55 and over is surely do'able - do you know how far under 60 it was ?
I can understand why they would question Herceptin for the HER2+ positive but there are chemotherapy drugs given specifically to those with heart issues that are kinder to the heart and have minimal effects compared to some of the Anthracycline types of chemo like Epirubicin which is the E part of FEC and Fluorouracil the F part chemo but there other several options.
J had 3 x FEC then 3 x T chemo followed by 18 x herceptin and had to have a two week break for her muga score to recover from 51 back up to 56 and had no other problems after that.
I don't think the empty pillow case is of concern it is probably only used for head / hair contact hygiene rather than it should have had a pillow inside it.
I would post this question as a new discussion in the Breast Group; lots of the ladies there have had chemo and herceptin so can give you experienced info about their muga scores and there may also be other members who have heart issues and could comment as well. I'm sure I read from a couple who have heart issues that were given a workable chemotherapy regime.
Hope you find some answers, maybe even consider asking your oncologist for further info about exactly why not, as they do come out with these statements, but rarely fill you in with the details :(
Take care, G n' J
Thanks for your reply. My muga scan was 53 so oncologist said anything under 60 she would not entertain chemo and withdrew it. This is what bugs me as she told us all about it and what she was going to offer, we decided to go home and talk it over for a few days. We then called spoke to oncologist and said we would take chemo. Then we were told about muga scan still nothing said about what number is acceptable got the scan only to have all treatment withdrawn. Then told letrezole and risedronate which were never mentioned at all from first visit in Dec, to operation on 24th Jan. So I am a bit grieved about it
Sorry to moan
and your oncologist made the decision to not allow some form of chemotherapy even without the Herceptin :(
It is a tricky situation to get your head around. A lot depends on if you were only going to be given chemotherapy to enable getting the Herceptin, or if the chemo without the Herceptin would be of little benefit ? As NICE stipulates Herceptin can only be given in conjunction with some specific chemo drugs.
Sometimes chemo only gives a couple of % added protection against recurrence over 5 or 10 years so the risk is low enough to not accept chemo as it can be a tough regime and can itself also cause long term issues.
There must be meds out there that could improve your heart function, it only needs raising slightly to be within the range. I can't understand why she didn't refer you to a heart specialist to see if they could get you to a level where chemo could commence. Getting your heart fit enough to have some at least Herceptin would be a bonus if that could happen...
I would definitely get to see or at least speak with her and find out if this is an option she could offer you; failing that if you have made your minds up to go for chemo there is always the second opinion option (which she should have no problems with) second opinions happen a lot.
You could also check out the NHS Predict Tool here (link) which will give you the % of recurrence risk with or without certain treatments. Please bear in mind the results are only averages based on the information you enter into the fields. Herceptin is named as Trastuzumab in this test.
FYI in the predict tool 2nd generation chemo is anthracycline regime like FEC and 3rd generation is a taxane like Taxol or Taxotere (docetaxel) with/without herceptin - You may find your figures are low risk :)
You do need further information and a few answers from her. Hope you manage to get both :)
Hi G n J
Thanks it was Fec as well with chemo 18 sessions every three weeks.
With herceptin all withdrawn because muga 53 too little for her liking her exact words were
The balls of the court but in Scottish lol.
I think I need to get over this as it is bothering me too much. Just make the best of not having treatment. But keep the letrezole and risedronate for next five years.
There are people worse of than me, I am lucky with the support I have from partner and family.
Thanks for your help
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