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Kat2000
Member
since
25-06-2017
21
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4
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28-08-2018
11:52
Hi Wee Burd, maybe it depends on at what age you had mirena. Mirena is not recommended for women over 50, so I still don’t understand why my GP didn’t take it out especially when I was diagnosed at 52:) It seems the combination of hormon therapy with mirena doesn’t sound very safe either. So what I think is I should research better myself not relying on doctors:)
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24-08-2018
12:11
Sorry I wasn’t sure that the question is for me:) My surgery went very smoothly and since that time I did the lymph massage of my arm and phisio. The breast is still sensitive though due to radio therapy last Oct/Nov.
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24-08-2018
12:04
Hi 2luvmylocs, I’m very sorry to hear your news. How old are you? I was about 47 when the mirena was installed. Despite the instructions on mirena’s website itself that mirena is not recommended for women over 50 my GP didn’t remove it when I approached 50. Even more - she recommended to use oestrugen patches “to feel better and to reduce risk of osteoporosis”. GPs don’t admit that mirena could cause BC - it’s like they have a code of silence. I’m year after the ops and radiotherapy, taking arimidex. I was lucky enough not to have chemo (see my previous posts that explain). All the best with your treatment. Stay positive!! xx
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01-12-2017
11:23
Another thought... I know a great examples of doctors here. It just happened that I wasn’t their patient at the time. Here is another story (it’s probably already in the other thread on this forum). When they dicovered that my sentinel node was affected my surgeon said that we have to do axillary clearance. I was shocked and followed the procedure. Instead of that she could have told me that there are some other options like genetic test (eg. Prosigna*) of the tumour to show if I am low risk of reocurence or another option - to do radiotherapy and hope that it would kill cancer cells and lymph nodes. More than one research shows that there isn’t any difference in outcome for women with BC with sentinal node involved who had the axillary clearance and those who hadn’t. There wasn’t much reason for doing the second op and damage the lymph system. So we are here to help and hopefully my experience would show other women other options to follow. * There are 4 tests available in Australia: two are sent off to USA and cost $5K and two in Australia and cost $2.9K. Prosigna is done in Australia and the oncologist agreed with our research that it was the best one for me. So I had it done and it showed I am at low risk I didn’t have chemo.
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01-12-2017
11:05
Ok Mirena is not HRT, but it functions on putting hormones into the body to treat the conditions women are suffering. It is similar isn’t it?:)
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01-12-2017
11:01
Hi RoadRunner, yes I fully agree that doctors are doing their best and they are very knowlegable. I just thought why my doctor didn’t tell me the obvious that mirena wasn’t recommended for women over 50... Makes you wonder:)
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30-11-2017
07:31
1 Hug
Hi Mai7, Thank you for the info. Certainly I became more knowlegable about HRT and affect of syntgetic hormones on woman’s body. Re the diet particularly dairy or alcohol - I don’t think it should be more concern then other factors like preservatives, antibiotics and chemicals in daily supermarket foods! What about smoking or passive smoking? How many women can eat organic food on daily basis? How many women can grow veggies and fruit themselves to make sure it doesn’t contain anything accept that from nature? I recon not many. Milk products are a good source of calcium that we need especially after 50. One glass of wine a day is not considered real danger according to the medical professionals at least here in Australia. We are affected by many factors every day but this forum shows that something is going on between HRT and instances of breast cancer and all of it is too much for a coincident. My doctor friend said that there are not enough studies about those instances but HRT might provoke something that already developing in the body. I think this is a typical statement for doctors - one can speculate that all of us would develop the disease anyway! The worst thing in all of this is that doctors promote so easily underresearched medications and treatments without much responsibilities for the lives of women who still trust them. So we are in the mincer and we better get out asap:) Best wishes, Katerina
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25-11-2017
08:29
Hi Mai7, Thank you for sharing such useful link! If in 2012 I started my research on dangers of hormonal therapy that was my mirena... I can’t turn the time back. I feel that I failed my own body to look after. I repeat to myself - don’t listen doctors, go and research. I think more truth should be said about mirena to warn women in future. My mirena should be taken out in one year time when I approached 50 mark. Now I’m at the stage of antihormone therapy after two operations and radiotherapy. Still - try to be positive:) All the best for your treatments:) Katerina
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17-11-2017
05:15
I’m pretty sure Mirena linked to BC diagnosis. It happens again and again. I recon it wasn’t enough research done on it. I’m after the surgeries now and after radiotherapy. 20 sessions, 4 weeks. They used a new machine and new technology when I had to hold my breath during the exposion. The skin survived ok as well due to the transparent film all over my breast. They said to keep the film for another two weeks after radiotherapy finished. Last Tursday I had appointment with my oncologist and he prescibed me Arimidex. I hate any chemicals in me and after reading about side effects from these tablets I am not looking forward taking them... Best luck with your surgery! Try be positive and strong. Katerina
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10-07-2017
11:32
Hi Ann, thank you for explanation of cancer terms. Now I know that I had WLE and SNB. Katerina
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09-07-2017
11:31
Hi Michele, unfortunately I am in Australia:) I found this forum on internet when I was browsing for "affect of mirena on breast cancer". By reading so many cases similar to mine I came to conclusion that mirena must helped develop bc in me. I should be more alert about my body and I wish I wouldn't trust my gp - she said it can't cause cancer. Although I have my doubts now. I found this forum is very useful so I decided to join:) We are living 20km from little town so the closest radiotherapy would be in Canberra or in Wollongong. At least in Wollongong we could stay with my husband's family as the treatment will stretch for 4-5 weeks. I am not looking forward to see oncologist because I heard the patients come out in tears from his appointments! I don't have more stress then I already have... It's good you are doing MRI! For some reason they didn't want to do it for me but maybe oncologist would send me there anyway... My tumour was "no particular type", but somewhere on internet I read that it's actually ductal. Let's hope they won't find anything unusual. I don't know what WLE or SNB is... 20th July is quite close. Will it be lumpectomy and sentinel node? You probably explained it all somewhere in the forum but I find it a bit confusing to find messages from people I already talked and made a connection:)) Keep positive. Read good books. I found a wonderful book recently "Happy for no reason" by Marci Shimoff (still reading it). Maybe you already know about it:)) All the best for you. Big hugs, Katerina
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08-07-2017
09:05
1 Hug
Hi Michele, last Thursday I had appointment with my surgeon and she gave the news of biopsies on my lymph nodes - they didn't find any cancer! I was prepared for the worse and almost couldn't believe my luck. It seems the axillary cleatance was not neccessary ... Too late now - I don't have lymph nodes now on my left arm forever. My arm has difficulty to straighten and physiotherapist promised that they would recover the full movement. There is something with nerves and I do exercises 3 times a day. I am waiting for appointments to oncologist and radiologist. They are just once a month here in our town! How are you going? Did you start your treatment yet? Big hugs, Katerina
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01-07-2017
11:08
Thank you Ann:) I am too far from your help line as I am in Austalia:) We might have similar forums and help, I just found this one helpful when I was researching about mirena:)
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01-07-2017
11:05
You are right about not fun clubs Michelle:)) Lucky you had your father. My father was away all the time because of work and then he started new family:) Xx
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30-06-2017
10:11
Thank you Sandra! I am going to physio next Thursday. Another question - do you wear the bracelet about the lymphoedema alert? I probably should look at the pharmacy... I feel so scared now about cuts on my arm and I'm not sure if I should be so paranoid or not. Big hug, Kat
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30-06-2017
10:10
Yes Liz, certainly it's strange suddenly to meet people with the same past and the same present!! Like I said to Michelle we are joining the club:)) It is a shame re your hormon negatuve but you have a plan:) And it's not like we are the first ones to face it. My tumour was eostrogen positive and progesteron negative. So I probably will be on hormon therapy for long time. Next Thursday I'm going to my surgeon and she will tell me results from lymph nodes and will send me to oncologist. On the same day I go to physio. Take care and hugs! Kat
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30-06-2017
10:00
1 Hug
Hi Migel, it seems we are joining the club here with simila situations in life! 🙂 So who brought you up? I was brought by my aunty, the younger sister of my mum. And who knows what my mum would die from if she lived full life. Unfortunately she suicided. I am scared to cry because I think I won't be able to stop:)) I try to distruct myself - do some graphic designs or draw/paint:) Kat
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29-06-2017
11:27
Hi Liz, thank you for response!! First I looked again at the forum and thought that my message was just read and passed as of course most of us here are having a hard time... But eventually I found my post and yours above!:)) My mother died when she was 41 but not from breast cancer. I was 10 as well. What a coincidence... Re this forum - I'm glad I found it as I can see how common our problem is and that I'm not alone. At the moment it's day 7 after axillary clearance. My arm feels annoying especially at the back and along it. Yesterday I said about it to my breast care nurse and she said it's rare condition called something like cording. She said she will organise the physio for me next week... Emotionally - I never cry, but sometimes I'm feeling so hopeless. I need to feel the other way of course. Distraction helps:))) All the best, Kat
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26-06-2017
01:48
Hi all, I was diagnosed in April this year on my birthday (ha! - "nice" birthday present:(). It was just a routine mammogram and they picked up a small 9mm lump in my left breast. I had lumpectomy on 25th May and then the biopsy results showed 3mm lump in sentinel lymph node. So at the moment I am forth day after axillary clearance. Trying to get to terms with different condition of the arm:( Still I don't understand why all of it is happenning to me - we live a healthy lifestyle, eating lots of fruit and vegies, don't smoke, don't drink much, do some exercises during a week. My grandmother on my farther's side died from cancer, but noone knows what sort. It's all pretty shocking... But together we might win, what do you think?:) Huggs to all and best wishes, Katerina
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