I was diagnosed with Invasive Breast Cancer in my left breast on Thursday. It’s a grade 3 but the ultrasound didn’t show any evidence of it in the lymph nodes. My surgeon said I need a WLE with sentinel node biopsy and then chemo and radiotherapy.
The thing is I found the lump in the middle of March, I waited a week to see my GP (22/3/10), Breast Care Clinic (31/3/10) for Ultrasound, Mammogram and Core Needle Biopsy and then back for results (15/4/10). They told me today op won’t be until at least 1/5/10 and more likely week after, Pre-op on 27/4/10.
I think this waiting is going to drive me mad!
I just want to scream at them, It hasn’t spread so far how long do you want to give it!!!
When they told me what it was they gave a pause for the instact blow and then they said they didn’t see any sign of it having spread I was so relieved by that but now the terror of what it is doing while I am just sat here waiting is driving me mad!
I’m really sorry to complain, I know it sounds daft but I don’t want to say it to my family and friends and I feel like I could scream.
I just want to know if this is a normal feeling, everything that is happening at the moment feels so surreal and I worry so much about everyone around me and what this is doing to them that I didn’t want to worry them all more by saying that I’m worried it will spread.
They all say “why can’t they take it out now” and “tell them you want it done quickly”, or “Say you’ll take a cancellation”. Like I have some control over how quickly all this works.
Reading all of your posts has helped me so much since I had my diagnosis. Both emotionally and in terms of learning about this thing.
Yes, I’d say that what you’re feeling is very normal. It all seems unreal, the waiting drives you crazy and you worry about everyone else! It does get better once you’ve started into the treatment plan.
Although I think it is natural for us to want the surgery as soon as possible, they always stress that it is highly unlikely that anything could happen in that time. When I was diagnosed I was a “weekend carer” and was told that if I needed a month or so to sort things out, that would be fine.
This site is a great source of support, so do ask any questions and it is likely that someone will be able to answer. However supportive our family and friends are, most of us find that there are times when we need to chat with people who are going/have been through all this.
I also had IDC in my left breast which was grade 3. I had an WLE then 6 lymph nodes taken away for sampling, fortunately these were clear. What you are feeling is perfectly normal as you are scared and the waiting does not help you feel any better.
I know this sounds strange just now but you will get through this. Keep positive and with the help of family and friends and the ladies on this forum you will get there. Once you have your operation and treatment plan in place you will start to feel as if the rollercoaster ride is getting easier. I felt the same as you 2 months ago. I am to have 6 FEC chemo and then 20 rads.
I had my first chemo 2 weeks ago and I have had my ups and downs but I am getting there. I find this forum invaluable for help and advice as their is always someone here who has been through the same as you
Let me know if there is anything I can help you with
Hi Jo
Welcome to the club that non of us wanted to join.
I am a little ahead of you (3rd chemo this week)but your reaction is perfectly normal. I think we all felt like get this thing out now!!! The timescale they have given you is about the same as I had. I had wle and lymph node sampling (6 removed) no node involvement Grade 3.
The waiting is the worst part but you do get through it and once your treatment start the time seems to go over quite quickly.
I think it is one of the hardest things to watch your family worry over you but they do it is only natural.
You will get lots of support on this site and can rant as much as you like (sometimes it makes you feel better).
Keep in touch and let us know you get on.
PM me if you want to ask anything.
Lala x
totally normal reaction, was mine too!I sat in front of my doctor and said can you guarentee that today is not the day it will spread? It has to spread sometime, can you say its not now whilst you are all waiting round? It seemed total common sense to me but they said its not how it works. Apparently it has to go through various changes before it gets the capability to spread and the wait does seem pretty standard and the medical staff don’t seem to worry about it. But IT IS REALLY AWFUL WAITIING and it nearly tipped me over the edge!
But the wait does give you time to decide which surgery to have if you want a choice. My initial reaction was double mastectomy, and over 2 weeks that reduced to wanting the WLE which the surgeon had wanted me to have all along. Plus operation dates are not cast in stone, mine was brought forward 2 weeks as my surgeon had to have time off and so did extra surgery lists beforehand. I would keep asking and badgering though, get your breast nurse on side, and i am saying this not out of physical necessity for you but to help you mentally cope.
Hi Jo,
I was diagnosed in february and was adament that there was no way I could deal with the ‘waiting’… but I did and you will.
We wait for breast clinic, diagnosis, surgery… then we wait for definitive treatment plan, chemo, blood tests… radiotherapy.
It doesnt make it easier to hear ‘take one day a time’, or ‘one treatment at a time’… but it is the best advice.
Best wishes
Marguerite
Hi
Yes, we would all second your thoughts on the waiting game, l was diagnosed on the 9th Feb, had my op on the 15th March, results two weeks later,(30th March) to be told they had not taken enough of a margin away, so needed a second op, which was done on the 14th April, now waiting for the results of that, may be tomorrow (20th)or next Tuesday (27th) before my treatment can start, even then it will be another week before l see the oncologist and another two weeks before treatment will start, this will take me to over 3 months since l was diagnosed, and knowing it is in my glands l have said many a time to the bcn, “it could be spreading all around my body while l am waiting for treatment” but the same response comes back…One step at a time…sometimes l wonder if l will get the chance to get to the next step…Something needs to change, we wait far too long for treatment and results.
Like you l want to scream, l have days when l think l am going to have a panic attack, then another day l feel in control, or at least try to be!
My friends also ask why it is taking so long, and l should complain!!! they have no idea. And hopefully they never will!
Love
Sandra xxx
Hello Jo,
Yes I agree waiting is the worst of all, and waiting for the unknown is even worse. Last time around, the waiting for the biopsy results was the worst. Even worse than knowing it was positive. At least then I knew which battle I had to fight. By the time I got to the op, I was so pleased to beable to sleep, sleep, sleep, even if it was only 4 hours !
The only words of comfort I can offer you, is you are not alone, if we are not waiting, we were, and we all know it is awful. Bev suggested to listen or read the words of the “Hero” by Mariah Carey. Don’t know if this is allowed but here is the link: metrolyrics.com/hero-lyrics-mariah-carey.html
Love to all who have had to play the waiting game
Maria
I was also diagnosed this week, due to bc already being in my family I got a 2 week referal from my doctor to the clinic and then a week of what i can only call a week of hell for my core biopsy results.
I also need a WLE and a sentinal biopsy, but the admin staff had finished work before my legs returned to normal so I am waiting for my date for my pre op and my actual op through the post.
My family and friends have all reacted like yours, “why can’t you go in now” and I dont know what to tell them, my breast care nurse told me my op will be about 3 weeks (it HAS to be done within 32 days of diagnosis). So I am in limbo again untill I know when it is. I have a friend at work who is having a mastectomy next week, and have got alot of strength from her and a friend who has just done 8 months of chemo and had good news yesterday that her radio therapy is only going to be 15 days and not 20 as expected.
The ladies who I have talked to on this site have all been wonderful, Maria also suggested I listend to “hero” by Mariah Carey, although it made me cry - lots !! it did help me.
Another thing I have found hard is peoples reactions, my children took it really well (2 daughters aged 22 and 13), My other half is still in shock so not said very much yet, my sisters and my mum can’t look at me without crying, and friends at work are much the same - which starts me off again… keep lots of tissues on you !! lol
We can all beat this horrible thing - we will stay strong and help each other through this.
I am sure that many people have said they are there for you, but if you ever want to talk/scream/cry down the phone to a complete stanger, but one who is at the same stage as you - I AM HERE
I agree, when I was diagnosed i was given a date for surgery two week away. There was no way I could wait for two weeks knowing that horrid cancer was in my body (and maybe doing all sorts and spreading etc). I really don’t think in the scheme of things a couple of weeks make any difference but at that time and in your head its a lifetime!! I investigated going private as if I did I would get it much quicker it would have cost me around £5,000 for the Operation (I don’t have private insurance). Anyway after speaking to BCN about my concens she spoke to the consultant on my behalf and managed to bring the surgery forward which was a real relief to me. However there is still the waiting for the results after surgery (two weeks in my case) and then I had to have subsequent surgery (again two weeks for results) then the wait to see the oncologist and then the wait to get the chemo started. I do understand the reason for the waiting, and I agree it probably is a good thing in one way in that it gives you time to think things through and make more balanced decisions about your treatment. However at the time its torture.
There are NICE guidlines detailing how quickly you should receive treatment at each stage and I must admit my NHS and met these guidlines all the way through.
Patricia
I know exactly how you feel and as the song goes ‘You are not alone’!!! I was diagnosed with invasive breast cancer left side, on Monday the 19th of April. At this stage Axilla ultrasound all clear. Going to hospital for MRI scan today to help decide what type of cancer and operation is needed. Booked in for surgery 18th May. I am going absolutely crazy and all of a sudden without warning I burst out into sobs of continuing tears. The nights are the worst as I live on my own. I have to sleep with the light on and the tv on low, which is not ideal as I am getting more tired as the days go on. I keep catasrophyzing, thinking that it has spread everywhere and every little ache and pain is cancer and yet, no one has mentioned this at all. Is there anyone else who feels like this??? I feel physically sick with worry and Find that I can not eat much. I am a strong person normally, but this has taken its toll. All I can do is try to remain positive, try and think about this rationally and know that there are thousands of us out there who have gone through what we are going through now and have come through the other side. Take heart Jo and everyone else out there. Debsxoxox
Hi Debs, Yes we do ALL feel like that! we all get an ache or pain and convince ourselves it has spread. so much so that l have had a backache for over a week, (diagnosed 9th feb) still waiting for chemo! spoke to my bcn who said she would book a bone scan, said it needs to be done before l see the onc, so to put my mind at rest she would get it done now!
When l think logically, l realise with all this stress l am bound to be UPTIGHT! so l will get aches and pains, that l normally would have taken no notice of.
Obviously with you being by yourself, the nights are always a lonely place to be, and our minds run wild! it is early days for you, the shock is still very much there! but it does get very slightly easier as treatment begins.
Your bcn nurse is always there for you to call, they will talk you through any immediate worries you have.
I get up some days and want to scream and tell everyone how frightened l am, but then l have a better day, when l can cope.
We are all in the most frightening place you can imagine, so we are allowed to get uptight!
As for food! being diagnosed is the best diet ever known!!!
Take Care
Love
Sandra xxx
Sandra I know you are still awaiting results any idea when you will get them? Good that you are getting your scan now though - because they didn’t decide I needed a scan until after my results and then is was more delay and more waiting (for results).
I agree with the pain thing though I see every lump/bump/pain as a sign of spread and I am sure this will not go away! I will be my GP’s worst nightmare I think!
It is frightening and we are all scared of what the future is and its hard to turn that around and live for today - I am sure we are all strong enough to do this (and a lot of ladies of this site are doing just that) I am still in limbo - some days I am fine, but others I am in despair and very emotional about the slightest thing. Its been much better for me after getting my treatment plan and a clear timetable (I will finish Chemo mid August Woopii!) and I am now starting to look to the future - I need rads afterwards so that will take me into September but then I can concentrate on getting myself ‘me’ again and getting my reconstruction sorted out. (this is me on a positive day by the way! the steriods are working wonders) so hang on in there!! your time will come…
x
Hi Everyone,
Here’s another vote for the YES the waiting is horrendous box. I was dx 9th March, confirmed 16th March scans done (which took some pushing from me to get them done asap), 2 x WLE and axillary clearance and a sentinel node biopsy on 7th April.
Had results this week for left side, still waiting for results of op on right side. Like everyone else, the same words come to mind, emotional rollercoaster, fear, the unknown and of course the feeling that each twinge you feel is IT spreading around your body faster than greased lightning(cue another song!).
No one wants to be in this place and oh what we would give to have our perdiagnosis lives back no matter how troublesome we thought it was at the time, what we wouldn’t give to go back to that square eh?
I too am on my own and agree that the nights are long and often worrysome and I have no answers about how to make it easier. I have a partner who lives 25 miles away and although he says r=to ring I’m certain that the last thing he needs at 3am is me on the phone and my concerns…so the dog gets to listen attentively to me then as I unspill all my troubles on her!!!
Good luck to all who are waiting for results, fighting this dreadful disease and not letting it take over our lives completely,
hugs to all
Sue xxxxx
Hi Saffronseed,
Hopefully, l will get the results of my last op on the 27th (Tuesday), l have my appointment for the bone scan for Tomorrow!! that only came in the post today, good job the post was on time, wouldn’t you have thought they would phone to confirm? my other ct scan is for next Thursday (29th). Needless to say it has bought it all to the fore front of my mind, so having a worrying day today! what are we like!All playing on my mind.
A lady l met had her results this week, not good news, it has spread to the bones and Liver,No chemo for her, and at the moment she cannot have radiotherapy, so they are trying some tablets! she is in such a state, she has no idea what they are, and she is by herself!! words cannot express how sad l feel for her.
Love
Sandra xxx
Yes the having Scans really get you on edge. I only had a CT scan, they said I didnt need a bone scan as if there was anything it would be picked up on the CT Scan? (which I thought was odd). Do you know how long you will have to wait for those results. I got mine on the same day - It saved a lot of more worries… I did get myself into a state over them - and was so relieved when they were clear - that in itself was a high - but only short lived as they do explain that whilst its clear on the ‘day’ - its like an MOT and you can pass it one day and the next day fail… These little blighter cancer cells are sooo nasty…
its really bad news for your friend I can’t imagine what she is going through - I am surprised there is no Chemo I thought that would be needed and tablets to support - but heh I am no expert. Looking at some of the threads on here there is loads of support for those with secondaries and there is so much treatment available… One lady (can’t remember her name now) has had secondaries for 20 years! they have been kept under control and in check and she is living and has lived a happy life.
good luck for tomorrow and next thursday! let us know how you get on. My first chemo went ok yesterday - not as bad as I thought it would be and apart from being very sick early this morning I have been fine… done the washing, hung the clothes out, done shopping, had a bit of a nap and now cooking dinner - and feel on top of the world! I think its the steriods. I don’t want to tempt fate as its early days…and tomorrow I may feel different…
x
Hi Saffronseed,
I got the scan appointments quickly beause l have had a bit of a backache over the last 8 days or so, probably stress!! hope so!
All the ladies with node involement at our hospital seem to have both scans, they are done at two different hospitals. just be glad to get them out of the way, looks like the other ladies l have spoken to have had to wait up to 10days for the results! that is just about my luck at the moment, but i don’t think it will stop any further treatment.
I have just spoken to the lady l mentioned, she finds it very difficult to take in, but what she tells me is she cannot have chemo because she has a stent fitted! she was going to have radiotherapy, but her mx and gland removal scars are infected, so no radio there until it is healed properly, l asked her about the tablets she went to have a look (bless her) said they were femera.
I did tell her l had read about people that have had secondaries for a long time, but you still worry.
Wow get you, with your confident chemo!!
well done, l assume they gave you anti sickness tablets, so they didn’t work then?? or did you not take enough?
So is the wig sorted out? l think they say something about the 17th day! or have l got that wrong? think l read somewhere about taking the steroids about 5pm, something to do with not sleeping at night, or have l also got that wrong…l really must start making notes before l start my chemo!! nothing sinks in!
Congrats on the first chemo! who would have thought it!!
Love
Sandra xxx
Thank you so much for answering me. I found the waiting terrifying and lonely. Knowing you were all there and understood got rid of the lonely bit and helped hugely with the terrified bit.
My 1st bit of waiting is over, I got my date for the op. 11th May. My first reaction - HOW LONG!!!
I rang my BCN to talk to her about how I was feeling. She was great but oh boy, more waiting. I do feel better now that I have a date though and can get the bl**dy thing out!!
I find the nights really hard too, my husband works nights a couple of times a week and I find myself wandering around the house, when he’s here I lay in bed trying desperately not to disturb him but end up beating the living daylights out of the pillow in an attempt to get to sleep.
I’ve told my boys, they are only 3 and 5 so only in the most basic language but they seem to understand as best they can. I’ve gone for the babysteps approach (at the advise of my son’s teacher who told me she had breast cancer two years ago)and so have only told them about the op.
Told everyone at work too and the family all know now. So now it’s back to waiting.
Thank you all for being there and good luck to everyone waiting for a date or waiting for results.
I hope I don’t sound too confident! (tomorrow will be another day and it may not be the same story…) its probably relief more than anything as they spend ages at the hospital going over the Side effects etc and it all sounds so very gruesome and when I had my projeted vomiting session this morning I thought that was the start of the worst!! I think it was my own fault though - I did have the anti sickness they put in with chemo then one table when i got home - but I had been drinking water for the previous two days 2 litres each day (as advised) but it was sparkling water and I think that was what caused it…the gases in my stomach.
Yes I have my chosen my wig - well the style but they have had to order the colour and I will collect it later this week. Its nearly the same of my own hair and colour - Its ok, but not sure about it really (but I don’t know anyone who loves their wig)… I suspect i will stick to scarves/hats etc most of the time. Hair starts to fall out around 2/3 weeks after first chemo - and thins out considerably - I think dependent on the thickness of your hair depends how long it takes. I will have my head shaved when it gets too thin - not ready to do so yet (even though the wig lady offered to do it when I pick my wig up).
Steriods yes, you shouldn’t take them after 5pm or you will be hyper all night apparently - I only need to take them for three days - they are to ‘boost’ you after the chemo (and they certainly do that!)
Its interesting about the different protocols for scanning - I just hope I am not missing out not having a bone scan - a work colleague of mine who lives in London who also has breast cancer is having a CT scan and MRI scan.
I didnt realise you couldnt have chemo if you had a stent - poor lady she must be in a real state and it is a real worry for her, especially if she is on her own. There is always someone worse off than you…
anyway take care and good luck with scans and all results