@glitteryrainbow amazing news that you have had a complete response to chemotherapy hunš„°.I can only imagine how you feel being given the choice when you thought that it would be a lumpectomy all the way through.I would say give yourself some time to think it through.It will still be a tough decision im sure.Im the same as in I have been told lumpectomy TNBC,I havent met my surgeon yet as 2 EC left after todays one.I donāt know whether this will now become common practice maybe.Sending you a big Welsh Cwtchā¤ļø xx
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@kiltie ,sorry to hear you have had such a bad time with everything.Amazing news your ct scan was clear and now you can start Chemotherapy at last.Its has been a bumpy journey but you will get there for sureā:heart:
xx
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@glitteryrainbow just want to echo @budsbails2301 and say what great news for you about how successful chemo was for you and for the unexpected choice now facing you; on one hand as you say in a process that frequently robs you of control and choice, having the option to make one feels important, but this is off-set by the lack of an obvious ābetterā choice and weighing up which is a lesser evils instead 
again as @budsbails2301 said take your time to consider which option feels more appropriate for you, and cry if you need to when making the decision about how frustrating this is, about how unfair it is that you are even having to make this crappy decision in the first place! It can feel like a lonely place sometimes, but youāre not alone, we stand with you, we may be facing different battles but are united against cancer
(Apologies if that sounds a bit like a movie speech 
but it does come from a place of sincerity!)
Finally thank you @budsbails2301 for your warm Welsh wishes and they are reciprocated to you from Scotland 
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@budsbails2301 and @kiltie thank you for your lovely words. I am so over the moon with the response ive had to treatment and makes it all feel worth it. Ive had a sleepless night, just constantly tossing and turning! This is a horrible choice as I am so scared of making the āwrongā decision. My surgeon did say that often, women just say ātake it off!ā Because they think it will prevent reoccurrence but thats not the truth. She also did recommend to still go for a lumpectomy. I have to trust her, but its hard when theres that little voice in my head saying ājust take it offā 
. Im going to write a pros and cons list, do more research and then make my decision and stick to it. Im also just having anxiety knowing that ill be having an operation
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Great news about the shrinking of the tumour 
As far as your surgery, you may want to talk it through with a BCN nurse 0808 800 6000 to get another opinion. Did your surgeon say which they would prefer? Itās so hard if they just give you the decision rather than their expert opinion.
In my case with bilateral (both) primary tumours, I thought they would say mastectomy but the surgeon said lumpectomy and radiotherapy as she prefers to retain the breast if see can. The outcome was the same. Do thatās what I had.
It seems odd you havenāt met your surgeon, have they given you a reason for no face to face?
Iām.in South Wales and met my surgeon face to face with all appointments. I felt it was important as you are in their hands asleep while they operate and you need that trust. I hope you will meet them soon.
@naughty_boob im in Singleton, ive been having meetings with my oncologist, ive never even thought she may also been my surgeon tooš¤£.See im so laid back i dont think xx
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@naughty_boob Just remembered I did meet him,he was the one who give me my diagnosis in the breast clinic and told me my treatment plan.So I assume I will meet him now after my second ultrasound where they can see the shrinkage of the tumour on the EC.The abraxane only shrunk it by 2mm so not as much as they would have liked. @glitteryrainbow hope you are okay and my mind is not racing too much xx
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Yes @budsbails2301 that sounds about right. The surgeon is usually the person you see first.
Iām in Ystrad Mynach for breast clinic was Royal Gwent, Newport and Velindre for oncology.
I know Swansea well, two family members live there. I believe you have a lovely Maggieās there, a friendās family used it a lot and my friend came to the Cardiff one and commented on how much smaller it is. Although there is a new Velindre and Maggieās being built but itās still years away.
Take care
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@naughty_boob aw not to far at all,yes Maggies is lovely.Myself and my partner went there straight after diagnosis, we were both in shock i think.We were met by a lovely lady who made us a coffee. All the staff are ex professionals who have worked with cancer,IE chemotherapy nurses,radiologists etc.So they know how you feel etc.Hope your treatment going well xx
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Hi everyone, just catching up with the latest messages. Iām feeling pretty tired at the moment- havenāt been sleeping well lately and this last week have been starting to get out of breath when Iām out walking and meet any sort of incline which is a bit worrying. Iām walking much slower than I used to - did anyone else find this?
Iāve still got 7 more paclitaxel sessions to go and itās starting to feel never ending. My son went back to school this week and all the after school clubs are restarting - my husband is going to be away next weekend which means I think Iām going to have to plan strategic naps around when I need to be Mumās taxi.
@glitteryrainbow great news on your response to the chemo, Iām sure youāll come to the right decision about your surgery, I had a lumpectomy before chemo but didnāt need to make a decision about it, it was all decided by the surgeon. I was really nervous about having surgery but it wasnāt that bad and the recovery was much easier than chemo has been.
@kiltie good luck with resuming chemo and @budsbails2301 good luck with the rest of your chemo.
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@dragonk thank you,yes im still out of breath when faced with an incline.Prior to chemo,I would walk 5 miles a day with my dogs,lucky now if I can do a mile.Our bodies are amazing, at the moment they are using everything to deal with Chemo.Im sure it will come back.Ive had to ring triage today, my Picc has moved 3 cm.I only have two chemos.left and keep hoping it will hold on until then.The team will ring me Monday,I would imagine i will need a chest X-ray.
Especially with EC my veins are rubbish and dont want the risk of a cannula as they just seem to blow my vein xx
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Oh no! Fingers crossed the pic line is ok and it manages to hold on. I was lucky to get a port fitted for my chemo and I think it has made things much easier.
Iām glad Iām not the only one getting out of breath, itās just this last week Iāve particularly noticed it and if Iām walking with someone else I have to ask them to slow down.
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Hope your PICC line is ok, they are fantastic but also can be problematic. Hopefully they can easily resolve it for you
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@naughty_boob @dragonk Thank you both,yes fingers crossed it will be okay.They dont seem to offer the port with us.I can imagine that being easier in regards to no line movement and being able to shower or bath.Saying that i bought a limbo sleeve which has been amazing xx
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I was given a limbo sleeve at Velindre when I had the PICC line put in with a bag of goodies for the district nurse. Surprised itās not the same across Wales.
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@glitteryrainbow brilliant news. One question i would ask is how much are they taking with a lumpectomy then if youāve had a complete result and thereās no tumour there at all? And what will your cosmetic result be afterwards?
I was offered both but in my circumstances im a B cup and Iām petite so with the size of my tumours theyd have to had taken a fair chunk and needed reconstruction with side flap, tummy and also needed a silicon implant. Otherwise it would have looked pretty odd. It took a fair bit of questioning to understand all that. I saw two surgeons one gave me so many options i was bamboozled and then the second who was the dr who gave me my original diagnosis gave it to me a lot straighter. I took two weeks to decide and it was agonising but make sure you take enough time and donāt be afraid to ask extra questions.
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So i know for sure now,what i feared all along.It is the immunotherapy which has been causing all my stomach and back pain,it also ended me up in hospital a few weeks back.I havent had immunotherapy this cycle and I have not suffered any stomach or back pain,Im trying not to get to upset ,as with TNBC it is the new treatment and is highly regarded.Sadly it does also cause your own immune system to attack itself and the stomach and colitis seems to be the place it attacks the most.Has anyone else experienced this please in regards to immunotherapy xx
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Hey everyone
Thank you all for you well wishes and responses to my situation. My head has been a whirlwind and Ive really struggled with the decision. But know whatever i choose, i am making the right one for me at the current moment. Im going to make a definite decision by Thursday and just stick with it. I am leaning more towards a lumpectomy as my surgeon still recommended it and said she was only offering a mastectomy as peace of mind. Other than this, i have been okay! Suffering with nausea and still struggling to come to terms with my bald head . Its my birthday next week, so asked for money towards a nice wig and some hair growth product as will be finishing chemo on friday. I also booked in to get my PICC line removed cant wait to get rid of this thing haha!
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Aww i am so sorry that you have had this news. Like ive said previously, i was never offered immunotherapy and didnt even know it was a thing until i read the book āsurviving triple negativeā.
But look at my response to treatment. Ive had a complete response.
Im part of a group on FB called ātriple negative breast cancer uk and ireland (TNBC) supportā, if you have fb, id suggest joining the group and posting on there. Ive read about lots of girls who have had a reaction to immunotherapy and had to stop it. But ive also read that even just having one is good for you. Please try not to worry, i was so stressed when i found out i wasnt offered it but the reality of it is, women before us havenāt had it and they are doing great x
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