Hi
I’ve started this thread for anyone out there who is going through the difficult process of deciding whether or not to have a mastectomy following a diagnosis for DCIS. Some people think that DCIS is not an immediate concern and that it may be safe to ‘do nothing’ and wait (and for some this may be true - trouble is, you don’t know ‘who’!). My DCIS (medium grade ER postive) had actually started to become invasive and, unfortunately, when DCIS turns invasive, it can become aggressive cancer (depending on the grade of DCIS) and this is why the option to have a mastectomy is often advised. I found out this information after my operation and was told I had a ‘lucky escape’ as my invasive DCIS was on the way to becoming IBC.
I had a DIEP & reconstruction operation on 11 May 09 so still recovering. I’m certainly no great authority on this operation but would be happy to share my experience or answer any questions which may help someone else.
This site and the discussion groups was a huge help to me and I’m grateful to all the ladies who have written on here. Thank you. If I can give something back … Even if no-one responds, thanks for reading this and good luck.
Lots of love xx
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Hi
Thanks for sharing your experience.
I’ve just been reading this thread with great interest as much of your situation seems similar to my own. I apologise if you’ve read it before and I’m repeating myself but I’d appreciciate any advice or experience.
After a complicated diagnosis I was finally told I had DCIS. It was high grade . I have had two wle’S and they haven’t obtained clear margins so I need a mastectomy. I am having this op on Monday with immediate implant recon. This will be temporary with a few to having DIEP later (possibly mastectomy to good side too dependent on genetic results).
I would be interested to know when and how you discovered the DCIS was invasive. Was it disocvered after your mastectomy? Did you have any lumpectomies before this? Also how is the recovery from the DIEP. I have two young children so I’m a little anxious about this!
Thanks
Freddiex
Hi Freddie, glad to meet you.
So where to start - DCIS diagnosis. The surgeon told me after the mastectomy & recon that the DCIS had started to become invasive (very scary as the core biopsy showed DCIS still within the ducts efore the op). Apparently, I’ve had a ‘lucky escape’ and was told that the nasty patch of DCIS was just starting it’s journey to become an aggressive inflamatory breast cancer - eek!! Now very relieved to have had operation as was originally tempted to ‘wait and see what happened’. Am now on tamoxifen for 5 yrs as precaution.
As for the DIEP op, I’ll try & ‘nutshell’ it but will answer any other questions you may have. My hospital stay was for 9 days. 1st 2.5 days post op were in bed (catheter for wee which wasn’t bad + 4 drains (2 in breast, 2 in tummy) and a drip for 1st day). Pain management was excellent and I can truthfully say that it was more soreness/discomfort that I felt rather than actual pain (period pain for me is worse) and I was fine taking codiene & paracetamol from day 3 onwards. For the first day or 2 I had a ‘bear hugger’ (like a hot lilo) placed over me to keep me at a very hot temperature - very sweaty but the ‘flap’ needed to be kept very warm. I was initially checked every 15 minutes and then every few hours. Was out of bed for v short while on day 3 post op and then little more each day and help to shower/loo from day 5 (took me slightly longer than some as I was ‘wobbly’ on day 3 when initially getting up due to low blood pressure but this improved. Catheter came out on day 5 and from then on I practised shuffling around with the aid of a chair on wheels to and from the bathroom. Also watched a lot of TV!!
You will DEFINATELY need help on your return home. I found it difficult initially with loads of back pain as I have weak lower back and this was not happy with my new stooped posture but this passed after a few days. Getting in & out of bed was interesting but doable and I had district nurse visit me a couple of times as had no one to drive me to doctors etc. Couldn’t shower for a week after return home so just strip washes. I was lucky as my older sister came and stayed for a few days and this was really helpful - especially for little things like washing up, helping to wash hair etc. Am just past week 5 post op and tummy still sore but drove my car properly for 1st time today - yippee!
Tips for hospital: Face fan!!! Night dress/'jamas? I lived in hospital gowns as there was some leakage from my drain sites - attractive!! Chewing gum’s not a bad idea as it may be a few days before you can clean your teeth properly. Wet wipes were a life saver as was the alcohol gel (cheap one from ASDA was fine).
Blimey, I’ve rattled on a bit here, time to shut up! Hope some of this has helped but if there’s anything - and I mean anything (no matter how small) more that you’d like to know, please feel free to ask.
Take care x
Sorry Freddie, forgot to say, no lumpectomies (DCIS too large). I had immediate recon with no implant 1st as surgeon was confident that the DCIS wouldn’t be able to wreak it’s havoc within the time frame - lucky 'cos it had certainly started!!
Hi diepcat - we’ve ‘spoken’ on the “sex after recon” thread, but I just noticed something you said here and just have to ask: “when DCIS turns invasive, it also becomes very aggressive” - my initial diagnosis was DCIS, I had a quadrantectomy, and they found 5 v. small invasive areas; because the margins were affected I had a mx after that, with no further invasive tumours as it happens, and no nodes affected.
But nobody said that it becomes very aggressive once it is invasive; in fact I had got the impression that it can still be low grade which means not aggressive. I would really like to know about this as I am wondering how they knew your DCIS would become ‘inflammatory bc’ since that is one of the rarer types I thought, and how they knew that it would become that rather than the usual sort. Because maybe they knew something about mine that they didn’t say.
hope you don’t mind my asking
sno
Hi Sno
Aha, thanks for you note (I’ll have another look at my wording, think I may have muddied the water as I’m only writing about my own situation and I’ve discovered there’s so many different types of breast cancer and even DCIS has a few different ways of behaving!). I also understood that low grade DCIS is likely to be low grade cancer if it becomes invasive and high grade, the most agressive once it becomes invasive and starts breaking out. I’m not sure if all DCIS, once invasive, will always become ‘normal’ breast cancer or the more agressive IBC, but my particular histology results after the mastectomy showed that this is what was what was going to happen to me. As we know with DCIS, there are a high percentage of women who’s DCIS will stay at stage 0 (or 'pre-cancerous) and never develop the ability to ‘break out’ of the ducts and become invasive.
My DCIS was medium grade and I had to have the ‘drastic’ M operation as the area was 10.2 cms area (too big for WLE or lumpectomy. I also had symptoms such as skin changes on the breast and nasty hard itchy area on the nipple which was causing concern)
Thanks for taking the time to read this - I’ll have another re-read and make sure that I state that this was my particular experience with DCIS.
Hope you’re well and take care - must have another ‘rant’ on the ‘sex after recon’ thread sometime!
Lots of love. xx
Hi, hope your recovery is going well! Had diep op on 6th June and my tum still feels really tight. As you’re a bit ahead of me i wondered how yours feels now?
Take care, Jan xx
Hi Karalouise
Hope your operation went well and you’re having a good recovery.
I’m now in week 11 post op and am just starting to be able to sleep on both sides but still mostly on my back. The tightness is still there (I describe it like a piece of cord tied low around my belly!) and I still feel a bit as though I’m in 2 halves but it does feel more ‘moveable’ if that makes sense. I was walking fully straight and ‘normal’ during weeks 9-10. You’ll find ladies on here who are quicker in their recoveries. Unfortunately, I did try and overdo it a bit in week 4 and ended up with a couple of areas of wound infection which set me back a bit. Best advice is don’t rush!
Take care and ask away if you need to! love. Cathy x
Hi
I found your comments about your experience very helpful, I have been diagnosed with DCIS intermediate on June 7th.At the moment I’m still debating wether to go ahead with MX as advised,with immediate reconstruction,both the Mx and recon are sticking points for me.The surgeon I’ve seen at my local hospital has told me not to expect to look balanced or even a reasonable result without a bra!
Well I’m sorry if i’m being picky but It surely Isn’t a lot to ask.I have now asked for a referall to another hospital.
It hadn’t really sunk in that it could really be invasive after all so your experience has helped me to come to a decision about MX.
Take care.X
Hi Shakey
I’m so glad you’re pushing to get referred elsewhere. When I was first diagnosed, the surgeon said I needed MX and then said, 'if you need recon, you’ll have to have LD - this was the only op my hospital did. Oh, and I’d have to have the other side reduced to try and match the ‘mound’ due to having E cup breasts. He also said that the recon would ‘not look or feel like a breast’. All this was sounding so bleak. BUT … the LD surgeon, lovely lady, was totally honest with me and said that the LD would not be right for me and referred me to another hospital for the DIEP op. This is the biggest of the ops but is reported to give the best results. I’ve had a ‘subcutaneous’ mx, which means they’ve kept most of breast skin. As for looking ‘even’, as I had ‘subcutaneous’ mx, I’ve kept most of of breast ski so my breast looks pretty much normal and the eveness will be superb once the recon has ‘settled’ and if it’s nt, PS will re-touch until she/I’m happy.
Sorry to waffle on but if you do decide to go ahead with recon, I can’t stress enough that you have to have an outcome you can live with. I would say ask as many questions, even the silly ones (I even asked what my ‘new breast’ would feel like!) and then ask some more!! This is your body and you’re in charge of what happens to it which is something that’s so easy to forget when you feel ‘led into’ or pressurised into making decisions. I am now happy with the reasons that I had mx + recon (and indeed that I was able to do this as fortunately didn’t need rads or chemo).
I’m glad you’ve found lots of support here and really do hope the decision gets easier. Ask anything you need to.
Lots of love. Cathy x