Good luck for tomorrow Freddie will be keeping my fingers crossed for the best poss news. Big sleepy hugs for you. xxxx
Freddie - thinking of you and hoping that all goes well today and you manage to get answers to all of your questions…
Theresa
thinking of you today freddie, hope it goes ok! love debs xxx
Hi all,
Well after a very long wait ( 4 hours before consultant saw me) I am not much further on.
The punch biopsy has not been conclusive. Like the fine needle sample ,it has come up as ‘suspicious’. The consultant still isn’t clear. He now no longer thinks it is lobular cancer but is more likely DCIS. He ‘thinks’ it may be DCIS in situ and non invasive but he can’t be sure.
So I’m having a lumpectomy anyway and then he’ll be able to work it out.
I really don’t know what to think about all this.In fact I’m really rather confused.
Hi Freddie - didn’t see you at the clinic, I’d gone by 4pm. It’s a bit of a crock that it’s still not clear, but if it’s DCIS that’s good as it’s regarded as “curable” these days. Mine wasn’t very clear about the hormone thing, just said it “wasn’t very positive” but I couldn’t get him to be specific about whether it is triple-negative. Will wait to see the oncologist and hope I can get something more out of him.
Hi Freddie and Suzanne
Frustrating for you both, with the unspecific comments, some of these surgeons are undoubtably brilliant at the surgery side of things - not so good at communication skills! - Prefer it that way round though - helps if there’s a decent BC Nurse around to fill in the gaps!
Freddie, as Suzanne says - DCIS is a positive thing - my cons announced it quite casually - “Just DCIS” - still feels scarey having op and anything else they decide. It undoubtably has a huge impact on us emotionally - going through the tests /waiing etc, but at least your are on to the stage of moving forwards. Have you a date of your op? - I’m in next Thurs 2nd April, it’s been a long wait, and in a wierd way - I now cannot wait!
Take Care
Love
Lizzy
Hi
Thanks Lizzy and Susanne
My op is scheduled for the 8th April so a little after yours, Lizzy.
It’s funny isn’t it. I am actually looking forward to the op too- not least because hopefully from there I’ll get some more answers.
I have spent two weeks thinking it was lobular and read up lots on that. Now I need to research the DCIS. It will probably be something else next!!
I really don’t know what to think. I’m cautiously relieved particulary as I had convinced myself my whole body was being ravaged by this thing.
Any thoughts on DCIS experiences would be very welcome.
Good luck for your op, Lizzy. Did they identify DCIS quickly for you?
Love Freddiexxxxxxxxxxxx
Hi Freddie
I have been reading your post, and it is a soul searching time. Quite horrible.
I was diagnosed with DCIS, and had a full mastectomy. At the time I was mortified at loosing my whole breast, but now a year on, I have had my reconstruction, and I am delighted.
However, one thing I do have is the peace of mind that they removed as much as possible so that my prognosis is one of the nest - infact, it is excellent. Infact, my surgeon described it as ‘curable, or as close as they can ever be considering it is cancer’.
My diagnosis was complicated - and yours is very similar. My symptom was not a lump, it was a small amount of discharge through the nipple. The mammogram and ultrasound and needle biopsy were inconclusive. ALso a biopsy of the discharge was inconclusive. Finally they removed a tiny bit of my nipple, and concluded that I had pagets and they were sure there was some cancer in the breast behind the nipple. However, I went ahead with the op, and waited for the histology results, expecting that I would need chemo and radiation. However, the histology results showed that I had DCIS - and this was probably why it was hard to see.
I hope this helps!
Lisa
Hi
Thanks Lisa . That really helps. It is kind of good to know that others seems to go through a rather complicated diagnosis too. I so thought I’d have answers yesterday but it wasn’t to be. I guess I should be comforted by the fact they are being very thorough. I have full confidence in my consultant too, so I know in the end the right thing will be done.
It is great to hear that you are pleased with your reconstruction.I also think the ‘peace of mind’ issue is so important.
I’m still learning about DCIS so thanks so much.
Love Freddie xxxxxxxx
Hi all,
After a positive few days I’m feeling a bit low again.
I’m now convinced I have wide spread lymph node involvement. You see I have had a sore throat for over a week now. When I press the glands around my neck they are not enlarged but are a little tender.Weirdly it is in the opposite side to where my breast lump is though. Also I have an itchy area on my waist line at the side. I’ve had this for sometime and until all of this I thought it was an area of try skin that had been rubbing on a label in my jeans! However after examining this area closely I can feel a little lump and the vein seems to be raised. I also seem to be itchy everywhere.
Has anybody else expreienced similar symptoms? I know this could be paranoia but it seems to have gone on for a while now.
Thanks
Freddie xxxxxxxxxxxxxxxx
Hi Freddie
You’re having a blip - we all do!
Understandably, you are worried, but I sure these are very unlikely to be connected to the DCIS. The lymph nodes you feel that are tender are more likely to be fighting off the sore throat, which is just s*ds law happening at the momment. Has anyone else around you had a sore throat lately? If you have had a sore throat in the past - the glands would have probably been swollen in the same way, but you are in a much more sensitive state to notice things at the momment.
Please, (and I know this is a really stupid thing to say!) try not to worry. Go and see GP next week if throat still sore, let them feel the glands and reassure you. If there is a throat infection, maybe anti-biotics might help, but more than likely, those lymph nodes will have it sorted - that is their job, fight the infection.
This mght sound daft - but hey ho - I get an intensely itchy patch of skin on the back of my hand - when I get stressed! - Nothing much to see, until I scratch it madly. The weather has also been wierd lately - warm, sunny, now back to cold - all this can play havoc with your skin. If you were not going through the BC mayhem at the momment - you’d possibly put it down to dry skin, and use more skin cream?
Freddie, I really hope you don’t think I am mimimising your concerns, they are upsetting and you have had more than your share lately. Just trying to say, keep things in perspective, talk to the professionals when you can, keep posting,
Take Care
Love
LizzyM
Oh lord, the paranoia! Unfortunately that’s something that we are going to have to learn to live with - and take small symptoms much more seriously than we might once have done.
But just because you have BC doesn’t mean you can’t have all the usual minor ailments. Apparently you’d be more likely to have enlarged glands on the BC side first, and in the armpit rather than the neck, so if there aren’t any there, it’s probably just a sore throat. And if you’ve been rubbing on a patch that’s been there for a while, it probably would be inflamed. And when you’re conscious of itchy, you feel even more itchy.
Try the board’s helpline - I rang them this morning about my swollen boob, and they were very helpful. And/or ring the BCN on Monday.
Hi Freddie
Just wanted to reiterate what’s already been said and add that it might be a good idea to give our Helpline a ring. They are open until 2pm today and may be able to offer some further support and information until you have the opportunity to contact your medical team or GP next week.
The number is at the top of the page, do ring them if you feel a quick chat will help.
Kind regards.
Louise
Facilitator
Hi guys,
Thanks for your support and comments.I suppose I’ll have to get used to these up’s and down’s. I thought I was doing so well the past few days but I guess I’m just somewhere along the path of the twisting turning journey, like everyone else here.
I know that in the past whenever I’ve been low or a bit under the weather I seem to get a sore thoat and swollen glands in my neck. It has always been my achilles heel and I’ve just got used to it. If it wasn’t for the BC thing I wouldn’t think much of it. Now I’m thinking it is more the root of something more sinister.I wonder if the stress has made it worse?
I’m glad that you folks are playing down the symptoms. That, I think, is what I wanted to hear!!!
Will go and see GP on Mon anyway I think.
Love
Lynda xxxxxxxxxxxxxx
Hi me again,
Just wondering what everyone thinks. This is a question I should have asked but didn’t.
As they are not entirely sure what I have following the two ‘suspicious’ but not conclusive biopsy results, do you think I’ll find out more on the actual day of the lumpectomy, or will I have to wait again?
Love
Freddie xxxxxxxxxxxx
Hi Freddie
Hate to say it, hun, but I would think there will be another waiting time, seems to be the case. Sorry that’s not what you want to hear, but better to expect that, than think you are going to get news straight after the op.
Stay calm, pop and see your GP if you need to, I know everything seems to take forever - but we will all see the end of this tunnel!
Love
Lizzy
Freddie. i too have the paranoia, had lump removed last Friday and waiting for results and node results! Every ache and pain is now cancer spreading through me!!! i know its unreasonable but… its just so horrible as I’m usually so sensible!! love debs xxxx
Hi Debs and Lizzy
Good to hear from you both. Thank you Liz for being realistic. No point getting my hopes up really!
Debs- sorry to hear you’re suffering from the paranoia too. Horrendous isn’t it? When do you get your results?
If we’re not waiting for one thing then it’s another. As my lumpectomy is on the 8th April I guess I’ve probably got at least a three week wait until I know anything more. Goodness knows what secondaries I’ll be convinced I’ve got by then!
Love
Freddie x
Hi freddie, i get my results on Thursday 2nd April at 2pm! I am so scared! Its my 49th birthday today and i am having a very low day so far! Kind comments in my borthday cards haven’t helped. Debs xxx
Hi All and welcome to Paranoia Street. You will get used to all this and the paranoia will stop. Personally, I was only paranoid at 3am and it didn’t matter how much rationalizing I did, at that time in the morning the bad thoughts continued. Now, 6 weeks post surgery and 15 weeks post dx, I don’t have any of those thoughts. I’m just waiting (again) for rads to start on 20 May.
Debs, Happy Birthday. Results time is scary, even if you are expecting them to be good, as I was. And the strange thing was, my results were good and I had a terrible time the next day. So don’t expect to come out feeling elated. You might, but then again, you might not. I don’t understand all the emotional stuff we go through, but one thing I have learned is that you can’t anticipate how you are going to react at any one time. I also know what you mean about kind comments. Guaranteed to get the waterworks going!!!
Freddie, the time will go, you will get your results. The waiting is horrible, but you learn to cope with it as time goes on. I expect if you think back to how you were originally, you will realize that you’re coping better already. We all have good days and bad days and we have to learn to live with that. But the good days become more frequent, believe me:D
Take care all.
Sal x