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Aurore2000
Member
since
3 weeks ago
18
Posts
18
Hugs
37m ago
Thank you Seabreeze for taking the time i will definitely call the number here and prepare some questions ahead of the meeting - i am looking at it as a possible good opportunity. Yes it does sound positive. This came a bit out of the blue to be honest .... thanks again and have a good day x
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2 hours ago
Oh Maryjv, I am so with you here! Work is a big unknown here. So far my workplace have been amazing and very supportive. Ironically I changed team to have a better work life balance, 2 days after starting I was told my lump was highly likely bc. I work in child protection for a local authority and my office requires travelling on the overground and the tube and my office is an open plan. When there is a bug around it usually impacts massively (this was never an issue for me, I rarely picked up bugs but aware this is about to change and i do not want to compromise anything and put myself at risk). I love work, it’s a big part of my identity and I am of a view it is key to keep some kind of normality however like you I worry about infections. Chemo might decide for me, I might be too tired to go. Friends and profs are divided about it - it is another big decision to make and it is hard. I am going to get the flu jab on Monday (first time ever) and buying some face masks. It is about making the decision that will compromise your recovery the least . It’s a big dilemma and I have not resolved it yet - the answer might come up naturally in the end. (Obviously there is also the financial aspect). hope your work supports you xxx
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yesterday
Thanks Shi, I have checked Patricia Prijatel on your advice and somehow had read about Shannon Doherty. will check the other ones too... x
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yesterday
2 Hugs
Oh Maryjv i am sorry for the news, I totally get it ! Today the consultant said to me « I know right now you can only hear TN but there are some positives and you need to remember » so I am holding onto this - that’s hopeful. A referral has been sent for genetic testing but this might take a few months but no cardiac echo planned as far as I am aware (strangely today I wondered if they would check my heart). It takes some time to digest the info and process. You are definitely in the right place ... Very likely we are going to find ourselves on the Dec 19 Chemo group. x
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yesterday
Hi lvp84 A bit of a dramatic morning as 30 minutes before my appointment with the oncologist I received a call from her secretary informing me that my appointment was cancelled as the team had decided I might benefit from a clinical trial. I got into a panic and requested to be seen regardless. They organised for me to be seen by the consultant who explained the miscommunication. Basically it was confirmed the CT scan and bone scan were clear, tumour shown a little bit bigger on MRI (21mm instead of 18mm) and 1 lymph node enlarged (armpit). He also confirmed the triple negative diagnostic. The team thought I might benefit from the Barbican clinical trial (immunotherapy) at Barts and will meet the oncologist leading the trial most likely next week. I am in two minds about the trial and need to know more about it before making an informed decision. That is another big decision to make... I am still none the wiser about my treatment plan but obviously chemo as a starter but no details about what chemo yet. So a little bit more waiting to do and still some uncertainty but getting there... Getting the markers fitted on Monday followed by flu jab... thanks for checking up on me Aurore xx
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yesterday
1 Hug
Hello, today I received confirmation of my TNBC diagnostic. I was expecting this but it’s still a blow. I was due to meet with the oncologist but appointment was cancelled 30 minutes beforehand as I was informed that I have been put forward for a Clinical Trial called Barbican (ironically it is one of my favourites building in London) and then would need to meet with the oncologist running the trial Dr P. Schmidt. It was unexpected so said I was interesting but would need additional information. Has anyone been involved in clinical trials? This may be a good opportunity. Thanks Aurore
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yesterday
Hi Dj43, I have also been recently diagnosed but with TNBC and since the diagnostic I have experienced pain in my back and lower back, side of chest as well as a cough that does not seem to go. Consultant and BCN are not worried and think it’s related to current stress of finding out the diagnostic - all my scans (including bone scan) came back clear and my lungs were clear. Some other people on this forum have experienced similar pain and I concluded that maybe we have to accept that we may become more aware of all the pains and aches in our body. It’s most likely nothing but I will definitely keep telling the people in charge of my care. i wish you all the best with your treatment and journey aurore
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yesterday
1 Hug
Hello, thank you all for your positive and encouraging replies, it is very helpful. I have my appointment in an hour with the oncologist so will have answers - the last 3 weeks have been tough! Maryjv, I hope your appointment went well - sending positive vibes aurore
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Tuesday
2 Hugs
Thank you Mai7 and Wonky for your responses. so many fears and worries - diagnostic of TNBC is terrifying me and I am so worried the already limited treatment will not work and/or cancer will spread quickly. I am so so upset and scared of this diagnostic - I am a French citizen and heard there are more treatments and drugs available in France. My life is here but shall I consider treatment in France. I am due to start chemo ASAP (1 or 2 weeks) - I am obviously scared of the chemo and not being able to hack it or for it to be effective. How do I prepare for this? - reading about alternative options such as COC protocole, suppléments and diet etc and it’s so overwhelming some days I feel I can do this other days i feel hopeless First meeting with oncologist on Friday and I am quite anxious about it as I will receive results of MRI and scan and we will discuss treatment plan. I am preparing questions but it’s overwhelming. argh I feel exhausted Aurore2000
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Monday
3 Hugs
Hello i had just under 3 weeks of hell trying to get to accept the news that I have BC. This has been a hell of a ride and thinking it’s just the beginning makes me dizzy! I have never been one for rollercoaster .... anyway here I am 18 days later from being told my lump was U5 with 2 suspicious nodes. Since then, blood test, CT scan, Bone Scan and MRI. I am meeting the oncologist Friday. So far I know that my CT Scan did not show evidence of distant metastasis, blood results are good. I am oestrogen negative (bummer) and my HER 2 is borderline (so it’s been retested) but conscious i have a good chance to be TNBC. I will start with chemo I imagine very soon. Waiting for results for MRI and bone scan so quite worried. i have started sleeping a bit more but have a 3:30 wake up time and have tried to keep going to work (but my productivity has been limited) and I have a ridiculous lower back pain and pain in a rib (since diagnostic). I don’t know why I am writing or what to ask but I guess I am trying to adjust to this. i have read people say things gets better when treatment is in place and gets started - I hope it’s true but that brings its own worries. I am worried that I will have to give up work as I work in a big open plan and bugs go round (the more I think about it the more I think it does not make sense to be in such an environment). I hope the oncologist will support an integrative approach or at least will be open to it. I hope I will be strong enough to question and challenge if necessary. I have thousands questions in my head that can’t be answered .... Thanks for reading Aurore
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a week ago
1 Hug
Hello, today I got the results of my CT Scan that the consultant said is clear. They have seen masses on my spine but they are confident it’s not mets. It was such an high anxiety meeting that I forgot to ask if it meant my brain was okay. Could someone shed some light on this? i have MRI for breast tomorrow and another week of waiting. Histology shows oestrogen negative but borderline for the rest so needs further testing. Hopefully formulated plan by end of next week! My focus is now on treatment and educating myself about it all ! I think I will call the BCC after MRI appointment to ask questions. Many thanks all aurore
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a week ago
1 Hug
Hi Shi yes I have seen it and had a read through already. I will definitely join thanks Aurore
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a week ago
2 Hugs
Hello! looks like I will be starting in December even though all not finalised yet ! thanks for starting the tread ! Going to read advice on how to prepare myself practically, physically and emotionally. aurore
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2 weeks ago
Thank you @jaybro for taking the time! i am struggling a lot and worried that I will get stuck in this place and give up. I barely sleep and eat so can know feel any little pain in my body and it turns into a spiral down the darkness. I can just about keep myself together at work with anxiety creeping up to the point of a full on anxiety attack at home. I understand this is a normal stage but all feel so out of control ....i am angry with myself for being like this !
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2 weeks ago
1 Hug
Hello Grade 3 BC confirmed today; waiting for receptors results but consultant sent me for a CT scan, MRI and bone scan. is it normal? Accepted the diagnostic today but now feeling very scared. Thanks
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2 weeks ago
1 Hug
Hello, a week ago I attended the clinic and today they confirmed that I have invasive ductal breast cancer grade 3 (not great) and 2 dodgy lymph nodes (not great) so Friday is my CT scan and next week the MRI and then another week of waiting before finding out if the m****r f****r has spread, also waiting for receptor results. So should get a sense of treatment plan in a week time. I had a hell of an emotional week since last week but today I was strangely quite calm and focused but I can feel that I am getting down the rabbit hole as I am preparing myself for further bad results. My husband has been great but today was a bit too much for him so it was funny I was the one comforting him after we had the results. I am trying to stay strong and positive but it is a bit difficult to find some positives right now. Reading this blog in the last week has been great and very useful in terms of info so I felt well prepared today when I saw the consultant and I liked the breast care nurse. Aurore.
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3 weeks ago
2 Hugs
Hi all, had a local pain in my left breast and initially thought it was linked to my periods and me going through hormonal changes being péri menopausal. As the pain remains and would wake me up at night I went to the GP who referred me to the breast clinic. I was there on Wednesday and the scan identified 2 lumps in left breast one next to each other and possible a cyst in my armpit. Consultant was not great at explaining but said 2 of them are U5. He said we should wait for final results of biopsies before talking about treatment. I was shocked and totally speechless so left in a bit of a haze. Went to work the following day as I thought it would help being busy but burst into tears 30 minutes in. Since then and like a lot of people on here I have been in limbo waiting for final results and fluctuating between “yes I can do this” to being totally broken. Of course I have woken up at 4am every single day. From reading here it seems to be a normal emotional process we are all going through in the early stages and it sucks. I am quite an anxious person so it is easy for me to go to dark places. Besides i have this throbbing pain that comes and go where the lump is and was wondering if anyone experienced this as I cannot find much about it. Glad to have found this forum. all the best to all x
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3 weeks ago
1 Hug
Hi Shelly i found out 2 days ago that my 2 lumps have been rated U5 and I have been in a kind of limbo since, waiting for the results of the Biopsy for final diagnostic. The waiting is hard ... and it’s hard to keep positive ...definitely an emotional rollercoaster. Mall the best
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