I was dx with widespread DCIS in august...the surgeon sent me for lots of other tests and a snb to check whether there was any spread. Thankfully there wasn't. The 31 days is an target for initial treatment..I guess my snb fell within this.
Once that was out of the way, I opted for a DIEP recon at the same time as my mx, so I was referred to another PS at a bigger hospital. I met the PS at the time of my referral and was told there would be a wait. I mentioned it was coming up to three months since dx and they said they would do me within the three months, so it was about a five week wait after that...but only because I took the initiative.
I would phone the BCN or the consultants sec, if you know the consultant. In my case I did so and found I'd been put in the non urgent pile by mistake as the sec had assumed something incorrectly. If I hadn't phoned I wouldn't have been seen until January at earliest, so that would have been five months. I'm not sure there is a three month target, I think they just feel that's a max reasonable delay after dx. Make sure you stress how long you have been waiting since your dx with DCIS because I'm sure it's not reasonable to wait indefinitely when you have a form of cancer.
At the end of the day, the recon holds things up a bit compared to a simple mx, but it's really worth it, you can get a very good result! If you have the mx then opt for a recon, you are much lower priority and have to wait a long time, plus it's two surgeries and more scarring. and the other good thing is that after a mx for dcis you don't need to have rads as you would after a WLE.
What area are you in, out of curiosity?
Best of luck, do let us know how you get on!
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My dcis WAS picked up on a routine mamm last summer. When I was called to the clinic they did another mammo, and a stereotactic biopsy of one areq of the dcis with a tiny titanium marker left in, like yours.
I was then sent for an MRI and a CT scan which I gather they do to help make sure it is only DCIS. Have they told you the grade..low, intermediate or High, which they can get from the biopsy. High grade is as it sounds, more active so more risky.
Well, I had two areas of dcis and the one they tested was high grade so they recommended a mx and no further treatment necessary. If there had been just one, theycwould have done rads after a lumpectomy.
I chose to have a recon at the same time as my mx, and chose the DIEP flap type, so prior to this Op I had a sentinel lymph node biopsy (op) to check if any nodes were affected as this would change the treatment. They weren't luckily and at least the op was a practice for the main surgery.
It does feel as though you're being put through hoops, I'm afraid, and for a time you will probably be going for sveral tests and then waiting for results. At least it gets the treatment as right as possible. The meeting of specialists is usually called a MDT meeting and the idea is to make sure all the different types of doctors give their expertise to each case. It's part of the national good practice guidelines so should be part of every diagnosis. Maybe one of the experts suggested the MRI that the original doctor hadnt thought necessary. An MRI is quite expensive and in some areas women have to fight for them to improve their diagnosis.
I hope this helps in some way, its a very scary time and you're probably similar to me and suspicious about why things are being done. In my case it seems to have worked out well and been for th best so I hope it's the case for you too. The trouble with DCIs is that no one knows which cases are going to develop further and so it's better safe than sorry in treatment.
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I also received quite vague instructions! From experience and questioning, you need a bra with no underwire, but with full cups that cover the whole breast..this is to help it keep shape while things are settling down. The BCNs also said the top edge needs to be very firm and supportve.I got a couple of the tesco sports bras, the cups seem to be small tho, so I had to size up. Make sure you get one with separate cups and not the uni boob style.
The spanx pants are really hard to get into initially, but the purpose is compression, ie squeezing your tummy. This helps to stop fluid building up and squeezes out what fluid does collect under the skin. The support pants also support your tummy and back which are weakened in the surgery. I didn't wear the spanx or bra until I left hospital, but was then told 24/7 for the bra, and all day everyday for the spanx, both for three months. The hospital will put you in surgical stockings, so try to save a few pairs ...they told me to wear them 24/7 for six weeks, except for when I showered. You can also get a tummy binder which wraps around with Velcro fastenings and compresses/supports your tummy...if you search on amazon you'll find them.some hospitals provide them and in the USA they are commonly used after a DIEP.
It helped a bit to wear soft pants under the spanx..and if you can find support pants with a gusset that opens, going to the loo will be easier. I actually got my most comfy pair from tesco online.I didn't have any problem with wound leakage anywhere, but some people do have a bit or even a lot, especially where the drains are removed.
It's a pity there isn't a way to recycle the torture garments (bra and pants) we get for the op...I've got several almost unworn ( especially bras) as I wrongly predicted the size I would be.
Where and when are you having your op?
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I also had a mx in November whilst others who had wle had rads afterwards so "emptying out" the breast does seem to reduce the other treatments needed unless the cancer has spread into nodes in which case it seems to need a full attack. I was pleased they told me I needed a mx, I was worried I might be offered the choice ...
You didn't mention whether you had been offered a recon? They went through all the options at my first dx appointment. I'd probably have settled for the easiest version of an implant but my daughters persuaded me that while I was under the GA I might as well go for the most long-lasting and natural version so I opted for a DIEP. The booklets sounded scarier than it really was, and the op wasn't nearly as long...six hours for the mx and recon.
If it's done at the time of the mx they can usually do a skin sparing mx, which means they just take out the tissue through the aerola, so there's less scarring. It's even possible to have a nipple sparing mx, though I wasn't suitable for that.
This is the time to be finding out as much as you can, so as the others say, do cntact the BCN. Some ladies prefer to go with the mx and leave it ati that, for me, staying as much like my old self as possible was important so I felt lucky I could have the DIEP recon.
Best wishes, it's a very up and down journey especially in the diagnosis phase, I was sent for SO many tests, I was really worried at the time.
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Oh dear, it must feel like a big hurdle!
As far as I know, it's about the BMI, so dress size is only one indicator, it depends on height too. Did they tell you your BMI? I think a BMI of 30 is the max thats recommended for a big op like this. Mine was 29 ( as I'm shortish) but a size 14 so I just got in on this basis and had a DIEP in November. Ooh my tum is nice and flat now, I think I lost about 3llbs there!
It's a balance of having enough tissue to fill a breast if it's a LD, DIEP or TRAM flap, without complications from strain on the heart etc in surgery.
Have you been offered any help with losing weight? I saw you've upped the exercise by getting a treadmill. My WIi fit was quite helpful for me as it gave me daily reminds of progress or not, and I covered lots of different exercise types. I REALLY must start using it again but 4 mile dog walks have taken over recently!
Best of luck, let us know how you're going? Pm me if you'd like to.
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Just spotted this thread. I had similar symptoms after my mx and recon when I had to have big doses of antibiotics. It met the description of tinnitus. It just lasted a few seconds but threw me off balance each time...seemed like a bee in my ear when it hit!
I haven't had to put up with chemo etc but I read that tinnitus can also be a side effect of treatment as well as large antibiotic hits.
I mentioned it to my GP at the time, he said to make sure I didn't have wax as that exacerbates the problem. I used sodium bicarbonate drops to get rid of a bit of wax, and after finishing the antibiotics, it gradually cleared up.
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Once you get the diagnosis of a form of cancer it's hard not to worry about spread into other areas. After my dx of DCIS I was put through MRI, CT and ultra sound scans sorts in case the cells had mutated and spread. Fortunately the other tests were clear, but I was really worried for a time. Maybe the same tests will be suggested to you if there is any cause for concern.
It sounds as though your weight loss might be stress related though.
You could telephone the help desk here as they are very helpful.
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I'm similar age to your mum, our free life is just about to begin when work goes away that is! I like to dance, take holidays, snorkel and wear a bikini. BC and surgery were not things on my agenda. I think there was a tendency by medics to encourage me to go for easy options at first, but my girls helped me see the bigger picture.
Anyway, I've two daughters and I have to say I put them through the mill a bit when I was diagnosed (dx) with BC last summer. I hadn't told them or anyone about my recall letter, but one happened to see it when she was staying with me. They both expected it to be nothing so we were all surprised when I had the Dx of BC. I'm someone who likes to be prepared and I was totally unprepared. But some people prefer to take it as it comes. I'd only say that there are decisions to be made and sometimes you need to speak up and challenge a bit, so it's good for someone to understand and be prepared, maybe your mum would like it to be you. Or maybe she can take this role herself. I'm not alone in saying that ladies need to speak up to get the best or rght treatment.
In my case it was DCIS which is early stage, no lump or anything. Because it was in more than one part of the breast, despite being early stage, a mastectomy and immediate recon was my best case scenario! It didn't seem fair! I was horrified by this and SO upset for a week while I came to terms with it. The girls helped do research with me, so we knew the options and possibilities before my next appointments. Like your mums position I haven't needed chemo. In fact as I had a mastectomy I didn't need rads. I had a really major op but just three months on I was wearing a bikini and had a lovely tum and the navel of a twenty year old as a bonus.
There are several elements to the treatment for a small lump, including a lymph node biopsy, usually a SNB which checks a minimal number of nodes and would probably be done at the same time as the wle to remove the lump. I had my snb separately as I was having a bigger op, but the ladies having surgery on the same day all had wle/snb. Our surgeon's style is to go in under the aerola so that there isn't any scar on the breast. This is something you or your mum could ask about....those ladies we very pleased.
After the op most come out on the same day. We actually met up for coffee in town the day afterwards! The other ladies were around 70, though you'd never know it as they look fiftyish. We couldn't drive and had to be careful not to lift things on that side but otherwise very little trouble. The three weeks of rads started a month later and the ladies travelled by train together each day. The only real problems they encountered was some tiredness and some soreness of the skin afterwards. They weren't gven any advice about applying creams or what to apply, soots worth consulting other ladies here, and of course, asking questions!!
Getting the diagnosis is a total shock to us and most of us fear the worst but there is so much good treatment now, that for most people the fear seems to be worse than the actual treatment. I hope this helps in some way to give you the perspective of several mums who have been in the same position in the last six months but are now out the other side.
Do tell your mum I'd be happy to be in touch if I can support her in any way ...you can Pm me if you'd like.
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I forgot to say I couldn't bear to look at any of my wounds..so I know where you're coming fro there. I had dsssings on myunder arm, breast, bikini line and navel. All the drains were out before I left hospital, but I hadn't looked even when I showered in hospital. My dressings were taken off two days after I came out, so that was day nine. Getting in my home shower without looking was quite hard, but I managed it..I didn't even want to touch the wound areas when I was washing so I used a new sponge...
I still didnt look! In hindsight I wish I had got a nurse to help me look bit by bit in hospital, but I didn't. I was worried it would look bloody and gory, and anyway, I didn't like the idea of having a wound at all.
I'll tell you why it's a good idea to look though, I got a bit of infection in the underside of my boob, but because I hadn't been looking, I hadn't spotted it to start with. My PS picked it up at a check up. So, eventually, I asked my (grown up) daughter to look at little sections of each of my wounds, so she didn't have a big shock of an unveiling and she talked me through inch my inch. None of it sounded too bad so I started to have a look using a hand mirror. Maybe you could get your OH or mum to do this sort of thing with you?
Well, once I had an infection I had to keep an eye on it...in fact it got worse so I needed a change of antibiotics. It was nothing more than pale pinkness to start with, nothing gory at all. All the wound areas were surprisingly tidy in fact (I'd never seen a new wound before). The GP advised me to taken photos so I could tell if it changed for the worst. They have been quite interesting to look back on, cos I can see how my breast and tummy have changed as they settle down.
I've read somewhere that ladies who have an immediate recon are more distressed and less happy with the recon to start with, than ladies who have a mx first who are so delighted to have a boob back. So I used this to tell myself how it could have been a lot worse. Id rather not have any scars etc, but it couldnt be avoided.
I'm four months down the track now and it's still settling bit, but it's all pretty good already and I'm so pleased I had it done.
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I'm so sorry you're going through this bad patch. It's a real shock to the body... the anaesthetic, the helplessness and dependency and the after effects that change day to day. As Rev cat says, a lot of this is very normal and will pass. The first month is the worst though, and if you haven't had good support it must be very scary.
I was lucky to have an immediate recon with my mx, in my case the DIEP/tummy tuck op. I hated having BC so as something had to be done, I looked on it that I was lucky not to wake up without a boob. The shape, size and feeling does settle down over time, in your case it will definitely improve with the top ups. I was told that the GA and the after effects of the stress beforehand make you feel rotten afterwards. My very low points were the third day after surgery and also day ten, both were Saturdays as it happens. If you can, just be easy on yourself right now, be pampered as much as you can, take the painkillers and work at the exercises bit by bit. The more often you move the arm and shoulder, really the soreness does feel better. Try not to worry too much about what you wear, just go for comfy for a short time? Having said that, a mans shirt is easy to get on, roomy and even looks sexy tied at the waist....
I asked my BCN if she could get me some help to overcome my worries and concerns and I was put in touch with a psychologist who is lovely and a great person to help me come to terms with things. It might be worth asking especially as you had a bad hospital experience... this could be your special reason for needing support quickly now. I just felt I'd take as much help as I could to get over the BC.
Go easy on yourself Hobo,and we are here to support you..
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Hi all ladies in waiting!
It's so fab seeing so many come through one by one, get through the tough part and move in so quickly. There's always a fear that "that's fhem, what about me" but seeing so many come through with good results does help.
Anyway, to nitty gritty...Just to say, dont worry about the catheter...I was terrified the idea but honestly, it's no problem and makes life so much easier. The more you drnk the better for your BP and for getting Ga out of your system, and knowing you don't have to worry about getting to the loo is such a relief. It goes in when your under and I really couldn't feel it at all. Slightly undignified when it's taken out, but its moments and nurses are used to it, it didn't hurt at all.
In terms of nghtwear, Hospitals vary but in mine they only drape the gown over you for first few couple of days while you're kept in bed. Then your own is prob better as the back slit is a bt undignified when you get out of bed.front opening essential, so they can check your boob and underarm area...and you need plenty of space to help you manoeuvre into and out of bed otherwise it can feel uncomfortable. Sleeveless or shortsleeve is best as constantly having BP checked, mid length is good to assist dignity, long might get tangled.
Hope this helps and I'm happy to share my list of useful "stuff" if anyone else would like to have a look..Pm me your email...
Really pleased for Shoez after waiting so long!
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Arghhh...I sometimes wonder if we could collate all the conflicting advice from medics that we wrte about here! They can't all be right! Massage immediately, don't massage till all scabs have gone, don't massage for 4 weeks, no mention of massage...same op, so many different medical opinions!!!
My Ps won't recommend anything, but when i asked, told me lots of ladies get great results from bio oil.and that aloe Vera is wonderful in all sorts of ways.
I really can't believe that bio oil is any more greasy than any lubricant. In fact I find it's absorbed really quickly with massage. I've used it pre and post my diep and my tummy and breast are in great condition.
One good piece of advice was, whatever you use, if you notice any pink or redness developing, stop using it immediately, dont use more to try to get rid of redness!! That's good advice!
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I was reading a thread yesterday and 99% aloe vera gel from H and B was highly recommended post rads. My PS also rated it on all scars after a recon. If you search the forum on aloe Vera I think you'll find it's been approved by lots of medics. There's some info that aqueous cream contains something that can be drying.
Hope this helps
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When you're gearing up for something so big, having to wait and wait and wait is just terrible. I had an immediate diep with my mx, so unfortunately someone else was moved down the list to fit me in as the hospital management wouldn't increase the surgery slots. I really hope you get a final date soon.
In the meantime, you could make a complaint to the PCT and or the hospital, or contact your MP....?
It's brilliant that more ladies are being offered recons and are feeling confident enough to go for it, but the resources aren't being increased, in my area anyway. I felt really sorry that someone had to move down the list for me, as it was full for eight months ahead with ladies waiting for delayed recons like you. Even so my op was more than three months after my dx.
If you would like to hear about some people's recent experiences of cancellations and waiting but then actually going through the op, let me have your email address on a pm and I can put you in touch with several ladies who have been in just that position. It Is worth it, despite all the difficulties. The waiting isprobably worse than the actual op. And there is a tough few weeks afterwards but everyone I know feels glad they went for it.
Dont despair, you will get there and hopefully your recovery period will be when the weather is good. Dont forget to PM !
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Hi all and especially Gillian,
I was reluctant to do so, but gave in eventually and I'd really recommend asking your GP for either something to reduce your anxiety or to help you sleep before your op and possibly afterwards. you'll need your stamina so getting to sleep is really important. I was SO anxious and hyped up, but took a low dose of zopiclone just a few times and it did help.
Love to you all preparing for surgery,
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It's awful, I know, when you're waiting for results. Hope all goes well for you today.
I've used Dr Bachs rescue remedy for years and years, I used tI have a job which from time to time needed me to give evidence in really stressful cases and I used it before each sessioin. You put a few drops under your Tongue or in a small glass of water. It's available in almost all High ST chemists.
Let us know how it goes, lots of people here to help you through whatever the results.
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ahhh Tinfish, your mum isn't quite so silly, in a way...I found that for a few weeks after my DIEP I couldn't eat a full meal because the skin was stretched so tightly there was no expansion room! Sadly this hasn't lasted, and it was very inconvenient happening over Christmas!
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I was a bit swollen overall between boobs and my tum seam, but it gradually dispersed, I'm sure yours will go down some more! Four weeks is nothing really, for recovery. I think about this stage I was able to increase my exercises which then increased my flexibility and after another week you'll be even better.
as you might know, I've been reading up on lipo for dog ears and it takes you into diep and other tummy reduction op touch ups. Evidently there's a process of tapering off the amount of fat towards the "seam" so that it lies flatter and if this isn't sufficient to make it flat, I read that it's quite common to lipo the area once it's settled down. If there's another body area that needs a bit of extra fill, then it can be one of the sources for the extra. This was all news to me, but then ive got no reason to know this really, but it seems to make sense!
Hope this helps. Bit more?
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