Can't believe it!

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Oh Freddie

We have all been there, and know what you are going through.
I didnt have a lump, so I had to make a decision on a mastectomy not having a clue to the extent of my ‘cancer’. I was told that it is normal procedure for breast cancer cases (inc DCIS) for a sample of nodes to be taken. I had 5 removed for sampling.

I was diagnosed with DCIS, - and of course, this meant that the nodes were free of anything related to cancer. However, lymph nodes would get enlarged with infections, not just cancer. So even if there is an enlarged lymph node, it doesnt mean that they are affected also.

I know its easier to say, but try to do something that will take your mind of it all… do something you have always wanted to do, but never seem to get chance to! Then come back and tell us all about it!!!

Lisa x

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Oh Freddie, it’s all so confusing and scary! Did you have your sore throat starting at the time your lymph nodes were scanned? It’s possible that had caused them to enlarge a bit…?

I had a bit of good news today - well, if “I have an appointment with the oncologist” can ever be considered good news. After waiting four weeks instead of two to see the surgeon post-op (he was on holiday for two weeks) I was getting worried about the referral to the oncologist. So I rang his secretary on Monday - and she said the appointment would be three or four weeks! Eeek - that would make it about 8 weeks from the op. Anyway, today she rang me back and said an appointment’s been cancelled tomorrow, and I can have it! Phew!!!

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Hi

Thanks Lisa and Susanne,

Lisa, thanks for sharing your experience with me. That must have been a big decision.Did you know it was DCIS before your masectomy?
Hopefully my enlarged node is not affected.It’s a good idea to think of something to keep me busy- I’ll get thinking on that one!

Susanne- sorry to hear your having a big wait too. It’s all a waiting game isn’t it? Good news that you’ve had a cancellation though. It shows that it is worth ringing and hassling a bit I suppose.I’ve thought about it carefully and I’m pretty sure that i felt ok on ultrasound day(weds) but my sore throat arrived a couple of days later, so I guess they could be linked. I know what you mean about ‘strange’ good news too. I actually can’t wait for my op, and hopefully I’ll be closer to having a few more answers.

It’s the waiting that I find so difficult but I suppose I need to try and get better at it.

Love Freddie xxxxxxxxxxxxxxxxxx

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Hi Freddie,
I had wide spread DCIS and had mastectomy with 4 lymph nodes
removed for testing, which came back clear. I think it depends on consultant as I was under the impression that with DCIS nodes were not involved when I questioned this was told it was a pre-cautionly measure.

Good luck
Maggie

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Hi Freddie, i go for my results tomorrow nearly 2 weeks since op!I was told they would do the dye test on my nodes and they tested 4, 2 of which were infected so they removed 70%, don’t know how many that is!!! But before I went in they said they didn’t think nodes were infected so who knows!! All I know now is that I can’t change anything so whatever they throw at me tomorrow I will have to take and get on with it! Hopefully my husband will remember everything they say!! love debs xxx

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Hi

Maggie- thanks for that. It does eem that it depends on the consultant your under doesn’t it? Mine has an excellent reputation with years of experience so I hopefully he’ll make the right decision. Did your widespread DCIS appear as a lump? So far, alot of reading I have done suggests that it is not usually found as a lump- but maybe I’m wrong.Just hope it is DCIS and not invasive now.

Debs- At last your results day is nearly here! I wish you loads and loads of luck.I was looking at past posts the other night and we really did come on here at similar times didn’t we?I think you’re right in saying we can’t change anything. I seem to go through a process of surprise and indignation when I first here what I have and then the more sensible’ well let’s get on with the treatment then’ once I know more. The unknown is awful though.

Love Freddie xxxxxxxxxxxxxx

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Well freddie and all, now I know!! they removed 21 nodes only 2 infected, but the margin was medium so i have to have more removed to give a wider margin so booked in for 1st May. Cancer is grade 2. So after I have recovered and healed from next op I have to have chemo and radiotherapy, think I was expecting it but …oh well on the road to zapping it and recovery. Will need lots more support from everyone now!! love Debs xxxxxxxx

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Hi Freddie.
My DCIS showed up on routine mammogram was recalled for further mammo plus fine needle biopsy then back again for WLE then MX all came completely out of the blue thank goodness for breast screening.
Hope all goes well for you.

Maggie.x.

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Debs - sorry to hear that you are going to need another op…:frowning:

Theresa x

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Oh Debs, what a drag. Apparently it’s about a 1-in-8 chance of needing a second stab at it (ooops, sorry, unfortunate choice of word!) I don’t know about others, though, but I found the armpit bit was a lot worse than that boob (although mine is still swollen) so with luck it shouldn’t be too bad.

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Hi Debs

Well at last you know the full situation- in some ways that must feel a little better. Bit of a pain to have to have another op though- and another wait for that , of course.As you say, you are now on the road to recovery and fully in the picture. We’ll all continue to be here for you through the twists and turns it may bring x

I had quite a nice day until I decided to carry on reading my big breast cancer book. I then got to the bit about ‘younger women and breast cancer’ and got very depressed about the ‘aggressiveness’ and poorer stats. Still, hey ho, onwards and upwards eh!

Grrrrrrrrrrr the unknown is still driving me nuts!!

Love Freddie xxxxxxxxxx

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Hi all thanks for yr support! Freddie the waiting is the worst, me and my husband have been to the cinema and had a pizza tonight. In some ways I feel much happier now I know what is going to happen, not happy that I have to have it all but now on track to getting rid of it!!
Puy away the book!!! love debs xxxx

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Put!!! xxx

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Hi

So pleased you’re feeling better. It is strange isn’t it-I know I’ll feel like that too. Must be patient.

Ok- point taken Deb and Susanne, I will put away the book!!

Love Freddie xxxxxxxxxxxxxxx

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Morning all!
Debs, sorry to hear you need second op, sometimes feels 2 steps forwards, 1 back doesn’t?

Had my WLE yesterday, for those still to go there, you’ll be fine! Had a wire put in first, to help them localise the area, which was done in the same mammo machine they do the stereotactic biopsy in (Sometimes it’s done with u/sound imaging)worse bit was the local anaesthetic stinging - honest!

Re nodes sampling, think it does vary from one consultant to another, especially with regards DCIS. Mine does not remove nodes when core biopsy shows “just” DCIS. The BC nurse told me that the next set of results, ie, the pathology of what was taken yesterday might indicate further surgery, like Debs if they don’t get clear margins, and/or nodes if the DCIS shows any degree of invasiveness when they look closely.
I suppose I saw the WLE as “that’s it, lump out” - which is right in a way, but to the medics, it is actually a biopsy, ie, gives them the info they need to plan next step. Does that make sense? Think I am just trying to get my own (post anaesthetic) brain around it!

Advantage of NOT taking nodes initially = the armpit surgery seems in some cases to cause more discomfort than the actual WLE

Disadvantage of NOT = possibility of needing 2nd op if pathology suggests reason for it.

Overall, I echo someone else here, thank goodness for screening, I never felt lump as my DCIS is in quite deep, and very early. Although I don’t think any of feel “lucky” right now (as so many people seem to feel we are!)we are “luckier” than it could have been.

As a friend of mine put it “You’ve just had the less sh***y end of the stick! - but it IS still a sh***y stick!”
Which I sincerely hope does not offend anyone for the somewhat earthy imagery, but I think it sums up DCIS pretty well!!

So, nice lazy day ahead of me, waited on hand and foot - sounds about right!

Take Care
Lizzy

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Hi Lizzy,

Glad to hear it all went ok.You seem to be very bright and breezy about it all too which is fab!You’ve also eased my mind about any worries over the op- sounds fairly painless. I suppose the logic behind a WLE is as you say- get the lump out and we go from there.I think your situation sounds fairly similar to mine although the consultant did add the clause’ we may, or may not find some invasive cells there’ I suppose in a way he is preparing me for everything.Doesn’t help though as In the meantime I’m convincing myself of secondaries! My consultant also gave me a vague ‘may or may not’ about the lymph node thing so I guess we’ll see.

I’m with you on the ‘lucky’ issue too. I actually have a bizarre and a bit embarrassing story as to how/why I found my lump. Although I do check by breasts I obviously wasn’t doing it in the right way-I can’t feel it in the shower, only lying down!As yet I’ve not shared it on the forum, but I may was well now!

Several months ago we were thikning of changing our car. Instead we decided to keep the money and splash out on other little things eg new bikes for plenty of rides in the sunshine, a new tent for holidays etc. As it was grotty weather at the time my husband really wanted a Nintendo Wii. So we bought that too and started improving our ‘wii fitness’! Well ,after vigourously playing Wii tennis, my arm muscle was killing me, and I was prodding my tender muscle- my hand went a little further and I discovered the dreaded lump. So I’m trying to see this philosophically and hoping that it was 'all meant to be’to have found it early enough. I’m honestly unsure if I would have found it otherwise.So in that sense I call myself 'lucky’to have at least found the thing.Just hope it is early enough !!!

Like you say I know I’ve got the sh***y stick- just hope it is the right end!!!

REst well and enjoy the pampering!!

Love

Freddiexxxxxxxx

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May all here get the less sh*tty end of the stick (is this the word of the week?)

Freddie, the op is not really “fairly” painless - the stick is still sh*itty. Thought I’d better warn you of that, so you don’t go in under a false impression and then get worried afterwards. But it isn’t as bad as you might be afraid it is. I found the armpit bit the worst at first, especially having the drain (I kept forgetting my bag!) The bosom itself has been virtually painless, the scar is excellent - it’s just this damned swelling that’s getting on my nerves.

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Hi

Thanks Susanne for warning me of that. To be honest, I know it sounds a bit weird but I really dont care what pain I have to go through to get rid of this thing!It’s the psychological side of things that are harder for me.

Bit confused about the ‘drains’ thing though.When I asked consultant about this he said he wouldn’t be leaving any drains in.

Might feel differently next week though!

Love

Freddie xxxxxxxxxx

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Freddie, I didn’t have drains and I think a lot of people don’t. I think it depends on the surgeon. And I’m with SuzanneA - the boob doesn’t hurt much, but the armpit hurts more. One of the worst things for me was the reaction to the drugs - sickness, migraine etc. I’d make a useless junkie!! Just make sure you tell them how you’re feeling if you’re feeling rough. Then they can give you something to deal with it.

And don’t rush out of hospital before you’ve been up and about for a while. I did and I ended up at home, being terribly sick and with no access to any medication to sort it out until the next day, when I could speak to my GP.

xx

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Have to agree with comments that armpit is painful ater node removal but boob fine! Dressings off now and scar is a long line very neat! At least with 2nd op looming I’m hoping it will be better than 1st! love debs xxx