My apologies for the delay in responding but I’ve had my two grandchildren to stay this week and have been a little preoccupied!
I have revisited my notes from the specialist as I can’t honestly remember the details for the Ki67 and androgen tests. My Ki67 test result was 10% which is deemed as low (good) and my androgen receptors were strongly positive at 8 - which is good too apparently. According to the St Gallen guidelines, a Ki67 of less than 30% in TNBC is considered to have a good prognosis. In essence both the results I had from these two tests, together with the small tumour and containment within the breast (and no sign in sentinel node) led to the advice that I should not have chemo or bisphosphonate treatments.
I hope this is helpful to you and I’m sorry I don’t have any further information about the specifics of either the Ki67 or androgen tests.
Please let me know if I can help with anything further and h look ow you get on. Annie
Hope you are staying cool in the heat. I have just had a call from the hospital and they removed 26 lymph nodes and they are all clear. My oncologist has agreed to get the K-67 test undertaken; but not androgen. When I see him I will ask the question. I cannot thank you enough for sharing this information. If the K score is low, I may not need chemo. Sending you all my very best wishes Sharn xx
Hi Sharn,
Wilting a bit in the heat, but I don’t think it’s going to last too long, thank goodness.
That’s great news, it hasn’t spread to your lymph nodes. I can’t remember if you said what size your tumour was, but if your Ki 67 is low then radiotherapy may be enough for you. 27 is a lot of lymph nodes, I only had 4! But apparently that’s quite normal, my breast cancer nurse said they can range from 4-30! Unfortunately mine had spread, but only to my first lymph node, and my Ki 67 was high so I’m pretty much resigned to having chemo. They seem to have done an androgen test on mine as well, but the oncologist said they don’t use that and I can’t find out what my result means in terms of treatment. Anyway, brilliant news, you must be very relieved. Let’s hope your ki 67 is low too. All best wishes, Valx
Hi Annie, that’s okay. I know having young children to stay can take a lot of energy!
Thanks for the info. It said on my biopsy histology that the androgen quick score was 5+3=8, but it’s been very difficult to find out any specific information about it or what it means. If my score is 8 and that is the same as yours, and yours is considered good, that’s heartening. Because my Ki 67 is high, plus it was in one lymph node so not so great. But it’s an apocrine cancer, even though it seems to be an aggressive little bugger, and they do seem to have better outcomes. I’m not going to worry too much about what might or might not happen in the future and focus on keeping as well and as healthy as I can. Thanks for your help and I’ll let you know how things go. There seems to be a lull in proceedings at the moment! Best wishes, Valx
Sometimes it’s so difficult to get either information or explanation about tests and what they mean. My Ki-67 and androgen were just explained to me as both being good Ki-67 low and androgen at 8 was also positive. Beyond that I know very little!
I agree that worrying about the future is futile as it is important to live in the present. By the little information available, the prognosis for apocrine TNBC is good and I’m happy to take that and be positive about my future.
Please take good care of yourself and remain positive. Enjoy the sunshine … while it lasts!!
Annie Xx
Goodness! I have just read all of this long and interesting thread. My oncologist just said I had triple negative breast cancer. He didn’t mention any different subtypes or any testing that has been described above, apart from genetics. I think I had seven or eight genes tested and thankfully all were negative. The tumour in my breast didn’t show up on any sort of scan. So it had progressed to my lymph nodes before I realized I might have cancer. I ended up having chemo for secondary cancer because I also had nodules in my lungs (it was later decided that these were benign because they didn’t change during treatment.) Fortunately the lower dose of chemoimmunotherapy was enough to zap the hidden tumour in my breast and the two in my lymph nodes. So I had a single mastectomy with axillary node clearance. Pathology of the breast showed a largeish tumour bed but also dcis intermediate that didn’t show up on any scans either. I was told I didn’t need radiotherapy. It’s not right that people get different treatments across the UK partly because some consultants are not aware of the latest research. In retrospect it seems I got the right treatment, even though my oncologist was unaware of the different sub types of tnbc
Hope you are coping ok. I have just been back to the surgeon for the final check up after all the surgery, she was happy to sign me off as not requiring any more surgery. I asked if the Ki 67 test had come back and she said that there were no results for that but my MIB score was between 25-30, I have no idea what this test is or what it means.(tried to Google, but nothing meaningful came up). She did say that she thinks I will be having chemo as it is triple negative; but she is not an oncologist and really had no idea. Which was not very helpful, when you really would like some answers. I have to wait until the 09.09.24, for my oncology appointment. Stay in touch and we can compare notes. The waiting is the worst part, the not knowing. Take care of yourself and Good Luck, Sharn xxx
Having read your latest post I thought I would try to find out what MIB was. Here are a couple of screen shots of what I found that might help you. There is also a web link or two that you could delve into for more info and maybe go to your oncology appointment armed with both info and questions! It’s what I did with the Apocrine diagnosis to challenge the treatment plan.
How are you getting on, what stage of treatment are you at now?
I have now got my Ki67 test and it is between 25-30 percent. I just received a call and they recommend Chemo. I don’t know if I should get a second opinion or if I would be wasting everyone’s time. Sharn xx
Hi Sharn
Sorry about the delay getting back to you. I’ve started chemo and wasn’t feeling too great. In the end I did get a written second opinion and she said because it had already spread to one of my lymph nodes and because my Ki 67 was 30 which is high, she recommended chemo, radiotherapy and bisophosphinates! The whole kit and caboodle. So I’ve started chemo. It actually wasn’t too bad and I felt okay for a few days after. Then I had a few days of feeling quite crappy, no appetite, generally feeling unwell, but then I picked up and don’t feel too bad now. Except my hair is starting to fall out, but then I knew that might happen. My next session is on Friday and I’m on TC which is Docetaxel and Cyclophosphamide, one dose every three weeks for four cycles. So I’m a quarter of the way through.
Yours hasn’t spread to your lymph nodes, which is good, but it sounds like your Ki 67 is relatively high. In the end it’s your decision but I felt that because mine had begun to spread, and because my Ki 67 was high, I wanted to do all I could to knock it out. Do you know what type of chemotherapy has been recommended for you? I think the one I’m on is relatively low key compared to some chemo treatments, and I thought I could cope with four sessions. I’m going to have radiotherapy too, but I’m not sure about the bisophosphinates.
Afternoon Val, great to hear from you. It sounds as though you are doing ok with the chemo, that is reassuring. May it always be so, did you try the cold cap for your hair?
I have one node involved, so it has spread. I have had complete node removal 27 in total 1 positive. I have a huge hematoma under my arm. I had an ultrasound scan on Friday and another biopsy, so very frightened. I know you shouldn’t but googled and found all kinds of terrible scenarios.
I have to wait 2 weeks for results. I have an appointment for a second option with Zr Zoe Winters, my sister had breast cancer and recommended her to me. I will let you know what her thoughts are. I have oncology appointment beg of Oct, everything feels so slow. I found the lump in May.
Stay in touch, sending you strength to get through the next few months. My very best wishes Sharn xx
Annie, how are you? So sorry I have just realised that I did not thank you for sending me the information on MIB. I really do appreciate your effort and it was very helpful. Sending you my very best wishes Sharn xx
I’m good thank you and getting my renewed menopause symptoms under better control again having come off HRT. Restless sleep and joint pain remain the main issues but I’m trying everything!!
I have my first annual mammogram in November so that will be a milestone. If it weren’t for the regular screening the cancer would have gone undetected for ages as it was deep in the breast. I only had to have minimal breast conserving surgery and radiotherapy so I consider myself very fortunate. I managed to swerve chemo as it hadn’t spread out of the breast and was small.
I hope you are keeping positive and managing to take things in your stride. It’s difficult for sure and only someone who has been through it can really understand.
I don’t know if it will help but I have found acupuncture has helped with the hot flushes and sleep. I’ve also just bought a grounding sheet to help with the sleep and joint pains. Both have really helped me to feel more normal again.
I also take various supplements to help with my immune system and to prevent cancer. If you want to know more about these I’ll message you.
In the meantime, take care and keep in touch.
Annie x
Morning Annie, How lovely to hear from you. I had a second opinion and ideally I should have had chemo and immunotherapy before surgery. I am now at St Barts for treatment.
So I have 16 chemo sessions booked in. I had the first one last Friday, I have not felt too well; main symptom feeling very sick and very tired. Long road for the chemo, but I am really trying to be positive, although it is not easy.
Interesting to hear about the grounding sheet and acupuncture. I have seen the grounding sheets on line, I might invest in one. The lack of HRT is making me very hot at night, if that helps, it has to got to be worth trying. I don’t think I can have acupuncture until end of chemo. I would be really interested in the supplements that you are taking. I cannot take any at the moment; but once chemo ends, I would definitely like to. Really good to hear from you, yes, stay in touch, Best Wishes Sharn xx
Hi Sharn, I’m so sorry I’ve not been in touch. My chemo is making me feel so tired and drained all the time it’s been difficult to find the wherewithal to pull my thoughts together. It may sound like my chemo has been terrible but it’s not been too awful. I have about three to five days in the week following where I do feel awful, but most of the rest of the time it’s more low key feeling bad. No energy, no appetite, tummy feeling off, brain fog. Nothing good but not really awful either. I feel a though I’ve stepped into some alternative universe! Oh, and I’ve lost my hair! Not all of it, about a quarter is left that sticks out all over the place and makes me look like a witchy woman. Just in time for Halloween!
I saw your post earlier and that you’ve started chemo too. It’s hard. But I feel it’s worth doing everything you can to stop the cancer coming back. Bart’s is a top hospital for cancer, so you’re in good hands. I only have four chemo treatments in total, so yours sounds a lot tougher. Mine is a treatment called TC which is Docetaxel and Cyclophosphamide. How frequent are your treatments? Mine is on a three week cycle and I have one left to go. I was interested that you said they may have given you immunotherapy, I didn’t think that worked for triple negative breast cancer because of the lack of hormones, but I might be wrong. It’s not a great idea to Google too much, although it’s difficult not to and you want to be informed. But I’ve found, once I’d made my decision, it was better not to. You can end up going down all sorts of rabbit holes.
Anyway, it’s really good to hear from you. Let me know how it goes for you and I won’t be so slow in getting back to you next time. Take care and all best wishes, Valx
Hi Annie and Sharn, I never took HRT so I didn’t have the problem of coming off it. I don’t know if it’s of any help to either of you, but I took Black Cohosh for ages and it really seemed to minimise symptoms. I also used a magnesium spray at night before going to bed for restless legs and cramps. I also used to take turmeric for joint pain as I also have osteoarthritis. Unfortunately a lot of supplements are forbidden to me now as I had a pulmonary embolism a couple of years ago and am now on blood thinners and loads of things clash with them.
Annie, I would be really interested to hear what supplements you are taking for your immune system. As you probably know the immune system is devastated by chemo, so it would be good to know anything that might help build it up afterwards.
I don’t know if this is of any interest to either of you, but I’m very interested in the subject of probiotics and probiotics. Dr Tim Spector is doing a lot of research in the area, although I’m afraid he’s now turning it into a money making vehicle via Zoe. The gut microbiome is a very new area of science and it is now seen as really important to the immune system. I don’t take supplements but make my own kombucha and water kefir and occasionally when I’m really inspired, my own sauerkraut! All fermented food is good for the gut. However there is a big debate about whether you should have these foods during chemo because of the potential for rogue bacteria to infect you when your immune system is down. So the official advice is no. But if you read closely it a “no but…” I had an appointment with a dietician and she said it was okay to cautiously keep taking them as I’d already been using them. So I have, to no ill effect so far. And I don’t know if that is the reason why, but neither my white blood cells or neutrophils have dropped very much. Of course there would be no problem at all for Annie to try these foods, but Sharn I’d say think very carefully during chemo and take advice first if you want to try them. But my experience has been okay. I think the reason the official line is no is because there has been no good quality research yet. So if you do want to take them during chemo, you’re going out on a limb.
but then I knew that might happen. My next session is on Friday and I’m on TC which is Docetaxel and Cyclophosphamide, one dose every three weeks for four cycles. So I’m a quarter of the way through.
Annie xx