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Back To The Waiting Room I Go :(

17 REPLIES 17
MarthasSOS
Member

Re: Back To The Waiting Room I Go :(

Hi Chascat - Im actually preparing for news of no clear margins and something in my nodes and it will be a 2nd op. anything apart from that will deserve a glass of wine 😉

I've only got a few more days and although I'm fighting the mind demons, I'll get there.

Take care
Martha xx
chascat
Member

Re: Back To The Waiting Room I Go :(

Ladies, my surgeon actually said to me, doesn't matter if there's a 98% chance your nodes are clear, you either fall into one category or the other so no point dwelling on it, he was right of course, but didn't stop me. My nodes were completely clear on the scan but a spec less than half a mm in size was found on my sentinel node, daft as it sounds i'm relieved it was found, I know that isn't always the case. Best of luck ladies, no matter what the results, you'll feel so much better when you know what you're dealing with and have a treatment plan in place x

MarthasSOS
Member

Re: Back To The Waiting Room I Go :(

Hi Suffolklady

I've still got to get a scan so I guess I'll be back to the bench in the waiting room when that one comes around lol.
I'll certainly keep you updated with my results - Yes, who knows, we may well be starting chemo together but I've got RADs to go through first.

Thanks PG - I bet you are glad that you only have one more session to go? You've been inspirational throughout this, not only to me but to others on this forum. My mum has IBS and that is a pain for her so I can't even imagine what you are going through along with all the SE's from chemo etc. Goog luck with the 'poo sticks'. And I'm sure you won't have bowel cancer 😉

LOVEABLE BIG HUGS
Martha xxxx
poemsgalore
Member

Re: Back To The Waiting Room I Go :(

Oh dear, this all sounds so familiar. Wishing all you ladies the very best of luck, but sadly our worries don't go away. I have one more session of chemo to go, and it's caused bowel problems (I won't go into detail, but it isn't pretty). Of course I've convinced myself I now have bowel cancer. Of course I haven't and when my 'poo sticks' arrive (it's an over 60s thing) this will prove I haven't got bowel cancer.

(((BIG HUGS))) to all of you.

Poemsgalore. xxx
Suffolklady
Member

Re: Back To The Waiting Room I Go :(

Hi Martha,
I'm a bit behind you - surgery on Monday - I've had the CT scan so I know that the headache ISN'T the brain tumour, and the backache ISN'T the spread to the bones etc etc but does it stop me worrying - of course not! Waiting and Worrying are all part of the factory that we find ourselves being processed in! Onwards through surgery, treatment and beyond.
I'll be thinking of you as you get your results, please do let us know. Maybe we'll be starting chemo at around the same time?! Until we know, in the words of the fabulous Ben Howard 'Keep your head up, Keep your heart strong' - it's my new ringtone (ironically replacing Nina Simone 'My way' - hearing 'and now, the end is near' was doing my head in!!!) if you haven't heard it - have a listen - we sing it as a family - you should see the looks we get! Good luck sweetie. XXXX
MarthasSOS
Member

Re: Back To The Waiting Room I Go :(

Hey Sara

lol - It is a darmn nightmare. Not long now until your dx and then you will be good to go. I'm keeping my fingers crossed that all is ok for you. My OH calls me a lumpacondriac. I felt a lump on my neck at the back, just to the left of my spine and at the base of my skull - It turns out it was muscular and the doc put it down to stress and said I need a good massage lol. I hope your decorating goes well and you manage to get it done over the weekend. Ah an 11 year olds b'day party should keep you really busy lol. Good luck for Monday 😉

Libralady - Thank you so much for coming back to this forum. It is ladies like you that help us keep the faith. I know this is the worlds longest rollercoaster and like you, in a few years time after the rads and the chemo are finished, I'll be back and forth to the docs and my onc demanding lots of scans etc. I am so glad to hear that you got the all clear and that you are on the other side.

Twizzle3 - Good luck for your results on Monday, let me know how you get on. I asked my BCN about margins & nodes but she didn't know either, so I'll just have to wait until Wednesday (or even Thursday because of the bank holiday). I'd say that if the were 98% certain, I'd stick with that and be positive. I was told at my ultra sound that there was no sign of cancer in my nodes, but only that path results will show whether my nodes are abnormal, but I'm holding onto the fact that they are just pre-cancerous and not actually cancerous.

I will keep you guys updated as to my results - Fingers, toes, legs, arms, eyes all crossed for everyone for amazing results next week.

I know this sounds sad, but I just want to get stared with my treatment. I don't mind the waiting room if I'm waiting for RADs or Chemo...It's the bloody results waiting that I hate.

Take care & squishy hugs
Martha xx
Twizzle3
Member

Re: Back To The Waiting Room I Go :(

Keep strong Martha. My test result day is Monday, I just want to know now so I can get on with whatever rather than feeling like my life is on hold. I was really lucky that whilst having the lumpectomy they did a frozen section of the lumpe glands and told me they were 98 per cent sure they were clear....but in my mind I bet ill be that pesky 2per cent!!! Anyway whatever will be xxx good luck in the 15/5 nearly there 🙂
Libralady
Member

Re: Back To The Waiting Room I Go :(

Good evening ladies
I just wanted to chime in and say that I was just the same - 20 months ago when I was Dx'ed. Its like every litte ache or pain is magnified 1000 times and you begin to believe that cancer is invading every limb, every vessel, every bone, every organ. Even bits of your body you have never ever felt before begin to start calling to you. I was totally convinced I had mets to the point I had to ask my onc to scan me as I was losing my flippin mind - which he did and I was clear but during the Waiting room time I was planning my funeral, thinking about my care, heck I even looked into which hospice I would go to as I had convinced myself I was a goner and resigned to the rest of my time on earth on being on chemo or fighting for my life.
Anyway - I went onto chemo, an Mx then rads and now on Tamoxifen. In recent months the demons came back again and all the aches and pains started up - same ole feelings, lacking sleep, feeling so so tired (but thats because of the lack of sleep) feeling odd aches and pains and yet again I believed it was back in every limb, every vessel, every.......you get the picture.
Back to my onc I went and again he listened to my plight and scanned me (CT scan an bone scan), got the results just Wednesday. All clear (THANK GOD). Again I sigh a huge relief and close the door but I know that at some stage in the future I will open it again and some random ache will send me doolally again....its the nature of the beast....but its the beast within my mind im fighting - your mind is a powerful tool - its can be your best friend or your worst enemy. You start to convince yourself you have pains you dont have. Its amazing as once I get an all clear - the pain just goes in an instant - thats how I know its my damn mind.
Just know that none of you are going mad - most of us on this forum who have had a positive Dx of BC will have gone down the same paranoid path you are currently walking down - how you are feeling is perfectly normal. But the fear will subside and you will begin to live again. At times the fear returns, something minor can set it off, and at other times you will have noticed you just get on with living and "cancer" will no longer be the first thing you think of when you open your eyes in the morning or close them at night.
It has its peaks and troughs and we just learn to accept them as part of our "new" normal. In a couple of years from now you will all probably like me pop in to see how everyone is doing and you will meet a lady going through the same fears as you are right now and you will be one of many who will think to themselves "there but for the grace of God go I" and be one of many who will try to lift them back up again.
Keep your chins up - truly.......it will get better. Im living proof.
God Bless

Smileyfaces
Member

Re: Back To The Waiting Room I Go :(

Hi Martha,

Sorry to read you weren't feeling good yesterday but I'm glad to hear you are feeling better today. Damn periods eh! Lol
You are bound to be up and down Hun so don't beat yourself up. It's understandable that you are having these thoughts. The waiting sucks and plays havoc with your mind.
I am also having the same thoughts about it spreading and i havent even been dx yet!! I've still not had results back from first biopsy and its still 2 days to go until my other apt for core biopsy. 8 weeks now I've been in this waiting room and every time I get a pain ache itch I think 'well that's it I've got and it must of spread because I've had to wait so long!' Heads all over the place...
I have found a small solid lump on my shin though and this is definitely not my imagination. I got a friend to feel it to make sure. It feels like a little nodule and moves from side to side. It's prob nothing but of course I'm thinking the worst. I'm going to show my consultant in Monday so will see what she says.
ive thrown myself into decorating my house to pass the time quicker. Thinking if I do get bad news I want my house to be spotless for all the visitors I'm going to get! Lol it's my sons 11th birthday next week as well so I'm making plans for that too.
Anyway way I'm waffling on now.. Just want to say that I think you are doing amazingly well. You are inspiring me. I will keep everything crossed for you on the 15th. Until then stay positive and stay strong xxxx
Lot of love
Big hugs
Sara xx
MarthasSOS
Member

Re: Back To The Waiting Room I Go :(

Hi Ladies

I woke today feeling much better. I started my period which I think has helped my frame of mind.

Thank you all so very much for your amazing words of kindness.

Love, respect & Big Cyber Hugs
Martha xx
samjs
Member

Re: Back To The Waiting Room I Go :(

I am having a better end to the week than the beginning!! I have finally come out as a control freak and boy was it hard admitting it to myself and others. But something good happened to day I booked my wedding for May next year so I am happier today.
Sam xx
MarthasSOS
Member

Re: Back To The Waiting Room I Go :(

Hi Sam

I even got an appointment with my optician this afternoon because my eyesight went fuzzy and I thought I had the begining of a sty in my left eye. I also have a numbness on the upper eyelid and an ach on my left temple and my upper cheek bone. But he said all is ok with my eye and that it is probably stress.

Now that I've seen him, my eyes are now ok lol but I still have the other issues - I suppose I should just put that down to stress also lol

I hope you're doing ok?

Take care
Martha
samjs
Member

Re: Back To The Waiting Room I Go :(

Hi Martha,
I fully understand you worries, since being diagnosed I have had pains around my clavical and shoulder and started to believe the cancer had spread. Thankfully my common sense prevailed eventually but not before I had wound myself up into a state. Unfortunately I think that once you have got on the C ride it is inevitable that we will have times we feel that. Hope you feel a little better and I think the best thing to do is to vent these niggles as w e all get them and can support each other when we do. Hopefully we won't all have pesky niggles on the same day!!
Hugs for you

Sam xx
MarthasSOS
Member

Re: Back To The Waiting Room I Go :(

Hi Ladies

Caroline33 - Thank you for your lovely comment, it is very much appreciated. Good luck with you dx results - Keep me posted.

PG - I am hoping that it is clear also. I'm remaining positive in that logically I am ok with a 2nd op for either a 'shave' or and ANC, I'm all ready for RADS and although not discussed, I'm ready for chemo. If it comes to a mx, I will be ready for that also. It is just my mind playing silly beggers with me that I can't handle. I had a 'dark'moment earlier (as you can tell) I am a fighter like you, and will keep on fighting - The war isn't over yet, it has just begun 😉 You are quite right to refuse RADs if it will effect your health. I see from your other posts that you are doing as well as can be expected on chemo, that is a good thing and I wish you, with all my heart, the best of luck with the remainder of your cycles.

Caroline - Thank you for your kind words and for coming back to the forum. At the moment, I am in such awe of the ladies who are a little further down the line than me and also those who are free yet still come back with advise. This site has been a godsend to me over the past few week. Usually, I'm really positive but it's those pesky niggles that get to me.

Role on next week.
Martha xx
Rachel_0203300
Member

Re: Back To The Waiting Room I Go :(

Hi Martha
I remember only too well how agonising the Waiting Room is. I had a WLE and SNB in March (Grade 3 IDC) and like you was amazed how quickly I recovered (physcially at least) from the op. I was very worried that it would have spread because of the Grade but I was lucky and it had not. They also got clear margins at the op. My lump was HER-2 negative, ER and PR positive. I was borderline for Chemo and decided not to have it. My Radiotherapy has so far been trouble free - I finish the last of 15 on Wednesday. I will then start Anastrozole as I am post-menopausal. One of the few occasions when being older is good as I understand that Anastrozole has fewer side-effects than Tamoxifen). Clearly (as I am writing this and visiting the BCC site) I still have a few emotional issues. I also care hugely for and worry about everyone else who uses the BCC site, which I find so supportive. However, I just wanted to tell you of my experiences so that you are aware that despite the horrors of diagnosis and waiting for results the outcome for some of us is really not bad at all in the scheme of things.
I can't say how much I hope you have a good outcome too. Rachel x
poemsgalore
Member

Re: Back To The Waiting Room I Go :(

Hi Martha, we all go through this period of worrying about mets. The results of your SNB should reassure you, even if they have found cancer cells in there (they did with me) but you will be advised on what is the most suitable treatment for you to get rid of them. A course of radiotherapy, or perhaps an ANC. I haven't had either, as I don't want rads (due to lung condition) but would consider ANC if necessary. I do hope they got clear margins, but several ladies I know have had to go back for a 'shave' of a bit extra tissue. I think they can do this twice if necessary before an MX needs to be done.
It's good that you also have a hormone tablet as an extra level of treatment. My tumour was 100% ER positive and 70% PR positive, so I shall have that eventually too. Good luck for your results day.

Carolina 33, wishing you good luck too for your dx results. Hoping for a good result for you.

Take care, both of you.

Poemsgalore xxx
Carolina33
Member

Re: Back To The Waiting Room I Go :(

Hi Martha. Just wanted to give you a virtual hug and support. I have not had diagnosis yet so probably not the best person to advise but I'm sure you're in good hands and everyone is behind you xx
MarthasSOS
Member

Back To The Waiting Room I Go :(

Hi Ladies

As most of you know, I have had my WLE & SNB on Friday 3rd May. Bank Holiday permitting, I am to recieve my results on 15th May.

I have been so positive since my op - My recovery is excellent, there was little to no swelling, the bruising in minimal (with the help or arnica) and my boob looks amazing (after remaining breast tissue was shuffled around).

In the back on my mind, I am preparing (mentally), to be told that I need another op because of either no clear margins or there are mets in my sentinel nodes. But this little niggle in the back of my mind is brewing every day into something a little bigger.

A second op isn't scaring me at all. What is scaring me is the fact that if I feel a pain in my ribs then I think it has spread, if I feel a twinge in my spine, I think it's spread. With all the stress (and I think I'm due a period very, very soon) then I think it's spread to my skull or my brain. I think I'm going nuts!

My lump was (I say was because it don't have it any more lol) a Grade 3 IDC and hormone responsive level 5 (so I was told after the biopsy) and I think because it was such a high grade that is the reason why I'm getting myself into such a state.

I feel a little bits better now that I've got it off my chest (no pun intended )

Thanks for reading,
Martha xx