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Dcis worries

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Re: Dcis worries

I just wanted to say that the 'what if it comes back' is always going to be there - BUT, it gets less and less of a jolt each time you think about it, and happens less often. In a way it is a bit of a protective mechanism as it means you stay vigilant. I had an mx for my DCIS and a reconstruction but unfortunately I still got cancer (in the reconstruction). However, the vigilance from the worry meant that I was able to insist that I was taken seriously and I went into chemo, rads, herceptin and more ops. If I hadn't been so concerned I may have accepted the statement from my doctor 'you don't have any breast tissue, so you can't get breast cancer'. So the worry helps us to stay safe and it lessens over time.
The good news is that IF you get invasive breast cancer after DCIS, it will still be very treatable and the statistics of cancer developing after physical removal of the damaged DCIS tissue are very low. I was just very unlucky - but I'm alive and cancer free and I'm now able to have some perspective which can only come with time.
So sorry for those in the early days - it is such a difficult time and there isn't anything but time (and counselling if/when you're ready) to help. Good luck to all of you - just trust in yourselves.
Annie

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Re: Dcis worries

Good post Deb2307. Hope your rads go OK. keep us up to date (my oncology appt on 29th to discuss my rads)
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Re: Dcis worries

Hi folks, I had a WLE on 28th Nov, I waited for the results the standard 2 weeks to be told there was a problem, the area was clear but no clip, so they had taken out more than they had planned but still no clip. So on the day I thought was going to be results I had to have another mamo and wait another week, that was the worst week. I am now all clear and I start Rads on 29th Jan. I went back to work after 10 days I found that it gave me a feeling of normal and time to think about something else. I have to say I had not really looked in the mirror and now I have I kind of wish I hadnt, but in a bra I still look ok (LOL). We all cope with this differently but we dont have to cope all of the time, just dont let it take over our lives as we are beautiful people who happen to have breast cancer not the other way round. Love hugs to everyone xxx

Re: Dcis worries

Hi Ladies, thank you so much for your advise and support, Stella sorry to hear you didn't get clear margins and had to go through a MX, I will pop over to Benchland and say hello to the lovely ladies there. I did dose of for 3 hours this afternoon with made me feel better.
Toriaconey, you have done remarkable well in returning to work it was obviously the right thing for you, I can't believe how quick you have recovered considering every thing you have had done and the amount of breast they have had to remove, I actually don't feel to uncomfortable today this is my fourth surgery in 12 months the others being on shoulder and elbow totally unrelated and is far less painful. I too appear to have lost a significant amount of breast I'm only a big cup so quite noticable. Keeping fingers crossed for clear margins. I wish you well when you embark on rads. xx
Karen, I do realise that my path is very different to that of my sisters, my 2 daughters are worried that they may end up with BC the are both grown up and we have had a discussion on genetic testing, we have an added wrry my son has lung cancer and whilst we know it's not liked to breast cancer it is still another cancer i the family. I do try to be positive and do have my bad moments where I just sit and cry. I do hope you pain subsides pretty quickly amd you too will soon get some better ZZZZZZ's
I have found a couple of relaxing CD's to play tonight and an old book with I love reading Mauve Binchey Circle of Friends hopefully this will help with my sleepng. This is such a roller coaster ride we are I just looking foRWrd to the day it stops and I can jump off!
I wish you all well on the journey you are taking and send you all (((( hugs ))))
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Re: Dcis worries

Hi Stella
I'm very humbled by your concern for me about returning to work. I can assure you that if I'd had to go for re-excision I would have taken longer off and if I'd had an ANC and or mastectomy I would also have been off for ages. As we have seen everyone is different. I found the hospital 2 week certificate was enough although my GP had told me he'd sign me off for more if I needed it.
I'm amazed at how straightforward everything has been and how I've experienced almost no discomfort . From reading this forum I know it's not the case for most 😞
I can get what you mean about it being a psychological and physical trauma. We've all been or are going through some dark times/pain etc. I'm sure I'll be fine and for me going back is getting back towards normal. I'll have to see how I am after rads and if I need more time i've got annual leave that i need to use up to reduce my workload or I will go off sick.
Regards again
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Re: Dcis worries

Hi Lynn x Im sorry u lost your sister , I lost one of my best friends to cancer she passed away after 3 years & I know it's hard when you have seen someone go through this & not have a positive ending , I think is that going to happen to me ? I'm frightened my daughter will associate the same with me , she is 6 &doesnt know everything yet just ive had a lump removed but knew my friend well & what happened , but two things I've learned from here is no one goes through the same path & the not knowing is the worst bit , whatever results you get you will surely feel better because then you can process it all , when you are in the dark I just think the worst .. Especially at night actually I was awake at some unearthly hour the other night & just wondered how many of us out there are awake with racing minds ! I'm still getting pain from my ANC so often shuffle down to the sofa with my pillow at 4am & get a couple of hours sleep , more comfortable there but still have to actually go to bed on a night although I dread going at the minute !
Keep strong & good luck with your results x
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Re: Dcis worries

Hi Toriaconey
I can't believe you have gone back to work so soon. I think you need to take more time out to get over the trauma of the diagnosis and major operation that you have just had. I was given a 2 week sickie by hospital after my lumpectomy then my GP signed me off for 4 weeks. He said I must not underestimate the effect the whole thing has on my body and mind. He was right.. My post lumpectomy results showed 2 poor margins so I had a mastectomy and immediate reconstruction. I was off work 6 months in all and going back was so hard. 2 years later I still struggle with fatigue.
Please be kind to yourself and take all the time you need to recover properly.
stella xx
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Re: Dcis worries

Hi Lynn
I haven't slept properly since my surgery.. either I only have one or two hours or I'm falling asleep mid-afternoon even if I've slept fairly well.
I think I've probably made up a deficit from years of working/living/having kids etc and now my body doesn't know what to do. I read and feel my eyes dropping then just as I'm about to drop off (having switched off light etc) I'm wide awake again for hours sometimes). I went back to work yesterday and I didn;t need any rocking last night - but did go to bed very late.
Mind does go into overdrive whatever daignosis we have been given and DCIS is hardly an 'only' diagnosis.
I had my WLE on 2nd Jan and have recovered well but yesterday the offended breast started aching (after no pain). I can only surmise this is a good healing sign. I too was concerned I'd have to have re-excision but then thought 'if i have to, I have to'. I Got results Wednesday 16th and I don't.. which is great.. but the path report does show they had to do 2 re-excisions whilst I was under the anaesthetic as the stained margins weren't wide enough to say for certain they would have got all the area (DCIS over 5cm area) - so two sides were re-excised. I think they took about 95g of tissue etc in all (about 3oz) and I would say that my R side looks about a 6th smaller than my left (which was a tad bigger anyway). There is a slight overlap of skin but as it is the inner lower quadrant, gravity helps to pad it out a bit. It may shrink further, I guess, once swelling goes down (maybe swelling inside from bruising) I'm an F cup (or was)
Sometimes I check the forum at night if I'm awake - or read some more or get up and make tea or just lay there. I found a book called 'In the Middle of the Night' (children's book) some years ago. It reminded me of all the people who are up and about and working during the night when most people are (supposed to be) asleep. When I got up to night feed babies (in the days before internet or even night-time TV) I sometimes felt lonely and that I was the only one in the world yet up again at night. The book was a retrospective godsend and helped me feel less isolated knowing that there were bakers up baking, postal workers sorting mail... and so on.
Perhaps it can help you to think that at least one of us breast women are also awake.. and you will feel less alone.
I'm thinking of you for when you get your results.

Re: Dcis worries

Lynn I'm sorry to hear how frightened you are right now. I was terrified when I first got the news. I have now had 2 ops (didn't get clear margins first time) . And now waiting to see oncologist to arrange chemo. I have been helped every step of the way by the medical team and my breast care nurse is wonderful. I take one day at a time. I also spend time in "Benchland" where there are a crazy lovely load of women in just the same situation as us and they help give me strength and a great outlet to rant and be "virtually" creative . Why not take a peek in that forum.
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Re: Dcis worries

Hi Lyn
you will feel tthis way right now. I know I did. When you get your results you will have your plan and feel a lot more positive. I had 2 poor margins and as I had small boobs I opted for mastectomy with a strattice reconstruction. I am so glad I did. I look at it that it is all gone now and I can move on.
try to get some rest and have faith in your medical team.
Stella xx

Dcis worries

Why cant I sleep had WLE on wednesday but haven't been able to sleep since, as soon as I go to bed my minds goes into over drive. I know I only have DCIS and am very grateful for that as I aware that many of the lovely ladies on here are suffering for more than me. But it just seems to be on my mind non stop all day I try thinking positively but then of I go thinking what if goes wrong what if i don;t get a good result. I try to do things to keep my occupied the night are awful I feel so scared and lonely.
I hate the wait for results I'm so worried they didnt get clear margins and that i'll have to have a re-ex which worries me sick, as i have a big dent in my boob now I don't know what is coming next the dcis has gone from being 5mm to over 3cm and thats before they cut it out. Some people say I will need rads others say no. I just don't know what to think, which this thing hadn't invaded my body. I'm sitting here listening to relaxing music as the oh is fast asleep.
I know I'm waffling on a bit but I have to do something before I go crazy. Doesnt help that my sister had BC and eventually she lost her fight. So I think what if mine come back! I'm 55 and should be in control of my life but it seems cancer has contol over me.
Sorry if you read this i know Im just being silly but I cant help it!