I am sooo frustrated and would to know if anyone else has experienced similar. I was diagnosed with high grade DCIS on 7th December - official diagnosis on 13th December. I was told that from the biopsies they were 80% sure it wasn’t invasive (which of course leaves 20% that it might be) I was told I would need a mastectomy and to think about reconstruction at the same time and an appointment would be made to discuss this with a PS.
This took place on 12th Jan (nearly a month after official diagnosis). Whilst waiting for this appt I tried to find out what the date would be if I just had MX and what if I had MX and recon but couldn’t find out although I was told by BCN that they were trying to fit me in before 29th Jan, the PS’s secretary last week told me my date would be 2nd Feb but they were trying to bring this forward. PS was lovely and went through options - decided on tummy flap. Today I have finally be given a date of 16th Feb - more than two months after DX.
I feel really mad about this. If I had known at the start that I would have to wait that long I would have opted for just an MX and not had recon at all (I wouldn’t be brave enough to have MX now then recon at a later date as 2 separate ops).
Has anyone else had to wait this long? I am worried that they will change this date as they did say today that it was going to be March but they had managed to bring it forward from then.
I had to wait from November 2010 until February 2011, it was tough as I’m sure you know… but I had a chest infection for January date and had to wait another month for a slot in Feb!
Same diagnosis as you and I had to have a mx.
I think my dates were just within official deadlines but afterwards I realised that our dx wasn’t a death sentence so it helped bring it back into proportion…
However, the trauma of waiting for your surgery and then the impact of mx is utterly horrendous.
I hope you manage to stay calm during this waiting. I just kept thinking I was given another month with my two breasts.
It’s my 2year anniversary next month but I can still remember the fear and hysteria beforehand!
Hi
Thanks for replying. What are the official deadlines? I thought it was within 31 days but obviously not. What date in Nov were you DX and when in Jan was op booked for - I bet you can’t remember now 2yrs on. What grade and how big was your DCIS,I presume non had gone invasive. Mine is 3cm.
Hi Lemoncake
It is frustrating and I am in a similar situation. I was diagnosed 29th Nov and saw my Surgeon 5 th Dec. widespread intermediate grade DCIS so knew from first meeting I would need an mx and was offered immediate recon. US was clear but was booked in for an SLNB on the 22nd Dec to be sure. Tried to get me in for mx and recon early Jan but earliest date was 14th Jan. then got a raging tooth infection start of last week so surgeon postponed the op as he said the was a risk of septicaemia and my body rejecting the implant. New date of 30th Jan and had a root canal last Friday. Had to visit dentist again today as another tooth has flared up and looks like I need yet another root canal. Dentist will talk to my surgeon again tomorrow so petrified the op will be delayed further as I need 2 sessions to deal with it and the last session will only be 4 days before the op. I know the holidays did not help with the initial date and I k ow my surgeon has said that the number of cases in my area has doubled over the last year but it is frustrating having to wait so long, especially when you have so much on your mind and can’t work. Also seem to have been on constant painkillers since the SLNB due to sore rib, sore scar and raging toothache so that makes me feel worse as well.
What I haven’t mentioned yet is that I am being treated privately due to cover through my work so it is not just the NHS that may have delays in some areas.
Although very frustrated, I am sure that they would rush it if i was in immediate danger and all my tests so far have indicated that is not invasive so assume that is why.
Try not to get too upset but I do understand how you are feeling.
Fingers crossed xx
It was Nov 12th dx after two previous lumpectomies and op set for Jan 5th but had it Feb 4th.
After mx analysis my DCIS had upgraded and was 11.5cm in total. High grade. No node involvement so do hope you can speak to your BCN in the very near future…
Your 3cm invasive area must be worrying the hell out of you.
Hi,
Firstly can I say that I think you’re doing really well and have made the right decision to go for DIEP. I’m eight weeks post op now and after the initial tough part, am so glad I went for it.From what I was tod there’s no need to worry, but easier said then done! My surgeon said fro the start that three months ish wouldn’t make any difference in dcis. At the start the tests seemed rushed which panicked me, then everything seemed to slow down!
I had my first biopsy on 24 aug, was diagnosed with high grade multifocal DCIS a week later, sent for all sorts of scans in case it had spread, then when I had the results end of sept, and I said I wanted the DIEP, I had to have a snb. which was done early October.
If I’d had a simple mx instead, they would have done the lymph nodes with the mx and this would have been within the 31 days ie by end of September. With the more complex recons I gather it’s normal for the 31 days target time to be missed as there are so many parts to the process.
instead I had to wait for the snb results which we thankfully clear and have more tests to make sure I was suitable for the DIEP. I then had to wait a month for a slot for the op which I finally had on 23 nov…they gave me just 8days notice of the date. Waiting for the date was horrible as I felt I couldn’t plan anything.
So for me it was 24 august to 23 November, your waiting time seems more reasonable but it’s a worry about what BC is doing to our bodies. Like you i wouldn’t have liked to go back for another big op so am glad i chose this.
If I can help with any info about the op, do let me know.
Hi ladies thanks for the posts.
Jelly61 how frustrating for you not being able to go for the op and what a long wait considering you are private. Does every day seem like a week to you, it certainly does to me. I don’t know how I’m going to get through the next 4wks and 1 day, if anyone has any tips please let me know!! Keep in touch Jelly - let me know how you get on with 30th.
Nonsuch that was a long wait. I haven’t had a SNB because I had my lymph glands out 12/13yrs ago with a previous invasive BC in the same breast aged 38 so the consultant is going to wait until the results of the mx biopsy are back at end of Feb to see if any areas have became invasive.
Its such a big decision to wait longer for mx/recon or to have an earlier mx and hope that none is invasive.
Hi Lemoncake, I was dx at the end of Sept and had a mx and DIEP reconstruction on 10 November. Because they have to schedule a breast team and a plastics team plus a full day theatre slot it does mean that the wait will be longer than if you do go just for the mx. It is frustrating to have to wait but from my point of view it was worth it. I am very pleased with the outcome.
Clare x
Hi Lemoncake (lovely name but makes me feel hungry!)
There are no deadlines as such, there are targets and these are in the NICE guidelines. I do believe that the target is for treatment to start within 31 days of diagnosis. That said those targets aren’t always met.
I had quite a few waits with my treatment, firstly for biopsy results. This meant that I gone to the GP in the first week of January with a very obvious lump and didn’t start treatment until early March. The waiting was horrendous and I feel for you.
I also had a wait for rads due to the sheer volume of people they were seeing in the dept.
If you know whether your tumour is ER+ then perhaps you could start something like tamoxifen? Worth asking although they wouldn’t do it for me.
The other option is to speak to PALs (patient liaison services in the hospital). I did get my biopsy results finally speeded up after their input.
I was told at the time that while a few weeks feels like a lifetime to us that in the scheme of things it’s unlikely to make much difference as most tumours have been there for a couple of years before they’re diagnosed.
Why don’t you give the helpline a ring to get their advice?
Elinda xx
I did everything duering 1 week because my ki( agressivity level of lump) was higher then 20%. I think if your lump is no aggressive you can wait longer.In same cases they are doing wery quick.Sometimes can wait for longer.If you worried you can check up your tumor aggressivity level and speak to doctor.
I was diagnosed with DCIS on 11th Jan, need full mastectomy & opting for immediate reconstruction. Trouble is PS in different hospital so appt there not till 2nd Feb with surgery scheduled for 14th March. 9 week wait going to be a nightmare, so I do empathise with you. My main concern is whether BC can now spread outwith ducts due to biopsies. Hope to get some answers next week.
I agree the wait is a nightmare, it seems like about 6 months since I found out about my DCIS and during that time the only thing I’ve done apart from seeing the PS is have a CT scan to check on the state of the veins for reconstruction due to previous radiotherapy for a different breast cancer 12/13yra ago.
Have they said what grade your DCIS is? Have you any idea which recon you might go for? I’m have a free tram flap (tummy). I doubt that there would be spread caused by the biopsies but it does make you wonder doesn’t it.
Emma 21,
As in my previous post, I was dx end of august, final,y had mx and DIEP end of November. Like you I worried a bit that it might morph and move out of the ducts while waiting.
It might help a bit to know that rather than the biopsy making it worse, when i had the path results afterwards, the biopsy had actually taken all of that piece of DCIS.
The waiting does seem endless and I felt I couldn’t plan anything for so long…but at the end of the day, the result is great and I’m relieved I was able to have the DIEP .
Specialist said he won’t know for sure what grade it is until they’ve done mx & get the results from pathology, which is strange because reading through other ladies comments & stories yesterday it seems they’ve been given grade from biopsies.
I came home numb after i was diagnosed & spent hours going through the info they gave me. I was of the mistaken belief I had a choice of all the procedures, but when I saw specialist again 2 days later & he got to examine me, he said he wasn’t sure what I would be suitable for & therefore wanted the opinion of the PS, which is why he referred me to them. I know he does the LD opp, but he felt there wasn’t enough tissue there to do that alone.
My head is all over the place around the recon, any that use muscle sound very aggressive & longer recovery, so I don’t know how I’ll feel if that’s what they say they can do. I just don’t think the breast free option is for me, but I do keep looking at that too. I’ll just need to wait till wed to se what PS says.
Trying to carry on life as normal for the sake of the kids/partner/work is proving very hard because its always on my mind. Had a bad day yest so came home from work, boss suggested I phone McMillan who were great, they put me on to BCC who were great too & pointed me to the forum. What a relief I have to say! I spent hours reading the threads & what a help they’ve been.
Good news about the biopsy Nonsuch & that the DIEP was the right choice for you.
You’ve done better than I did initially…I couldn’t face the booklets for a few days. Locked them away! When i did go thro them I stuck the pages together with all my tears. My kids urged me to go for the DIEP as they said while I was under ga I wouldn’t know if it was two hours or 8 hours.
In fact, if you have enough in your tum, the diep doesn’t use any muscle, just the fat, a small skin patch and some
Blood vessels. I can hardly tell it’s been done now, and I’m just nine weeks post surgery. I’m having a nipple created in about May. The LD flap does use muscle but I have several friends who are really happy with that choice…one is having lipo to makemup extra size, others had implants too.
I was referred to a PS at a bigger hospital when i opted for a diep because they tend to be the ones able to do the more complex ops…my initial surgeon only does mx and implant ops. The facilities in the bigger hosps are better too. It meant I had to wait three weeks to see the ps, then wait for the op but it was worth it in the end as I would have found it hard to go back for a recon later.
Emma - you said in your first post that you are seeing PS on 2nd Feb which is Thurs and then in the last post you mention going on Wed. Just thought I’d point this out in case you turn up on the wrong day, that would be horrible wouldn’t it?
When you are diagnosed it comsumes your every waking thought to start with doesn’t it? Remembering last time this does get easier as time goes by and you just think about it less and less.
The reconstruction that uses the most muscle is the LD (back flap) but this is about a 5hr op compared to the stomach recon which takes about 8-10hrs, I’m not sure about the difference in recovery for both though. I didn’t fancy having an implant with the LD as the plastic surgeon said it would need changing every 10yrs or so.
Nonsuch - yes thats what people said to me about length of op and you don’t know how long you are under for. I am really worried about being sick afterwards with stitches in my stomach, did this happen to you?
I am having a free tram flap which will involve taking some stomach muscle and putting in 2 layers of mesh to prevent a hernia in the future. I don’t really know (and keep meaning to read about) the difference between a tram and diep. The PS said he would need the blood vessels from the stomach muscle as I’ve got Crohns disease which can make the veins a bit crumbly. If he hasn’t got enough with the stomach ones he will take more from my opposite shoulder or ankle!! Amazing what they can do isn’t it?
What kind of bras did you wear afterwards? My info sheet from PS says high impact sports bras so I’ve been looking for front fastening to make it easier but can’t find any. It also says a corset or stomach binding??
Hey Sandra,
Your complication just underlines how individual our treatments have to be, dont they? But also how clever the surgery is now!
I was lucky in that my single mx and DIEP only took 6 hrs of surgery because all went smoothly and there were two teams so each of the five surgeons did their bit in sequence. Evidently it takes about 45 mins to set everything up once we are knocked out and before the surgeons actually start. So they did me 9-3pm and I was coming round in recovery at about 3.15… I heard one of the PS phoning my daughter as he’d offered to do. Got back up to my room at 5.30.
I was fine initially but I think I was too keen to drink as my teeth stuck to my tongue i was so dry…think i drank too much and had too varied…mint tea, apple juice, squash, water etc and not enough to eat…just ginger cake. I didn’t feel sick but projected a big stream of liquid at 11pm and again at 12… Strangely it didn’t hurt and as it was so liquid, it didn’t smell or anything either. It didn’t worry me and they just added a drug to my drip. Most of the stuff I had worried about wasn’t a problem! I had a rotten headache and bad backache cos pillows weren’t properly arranged but they were my biggest problems, honestly!
Bras, i had read on a forum that one hospital gives patients a particular bra…a triumph sport active I think it’s called. Several ladies recommended them so I’ve bought a couple and they are the best I’ve found. I ordered from hse of Fraser on line in the current sale and they were £18 instead of 23 in the shop. I will wear these after for the gym. I was given one front opening one, but it was hard to do up and I didn’t like it. Reaching behind me hasn’t been a problem tho, anyway. Thereare some specialist online companies which do make a front opener post surgery item…but expensive.
I’ve used spanx type high waisted pants but they were horrid to put on initially over the tum wound.but they helped swelling go down and If I don’t wear them my back still starts to ache I find. I can send a link to some companies which offer surgical binders with Velcro but I didn’t find these till it was too late!! I tried a special surgical corset with front hooks but it was too long in body for me. I had very good service frm a mail order company and can also link you to them. Another good buy was a maternity nightie from M and S, buttons all the way down and generously cut which made it easier to get in and out of bed.
Which hospital are you going to, and have you got a date yet? I was like a scared rabbit beforehand but it ws much better than I imagined. Really glad I had it done!
Well spotted Sandra! Appt 2nd Feb - next thur, not wed. No idea where I got the wed thing from … Must have been having a moment! Following your convs about recommendations, this is invaluable info that I would never have given a 2nd thought to, so helpful x
Just to say I got the name of the bra wrong, it’s the triumph
tri active. One of the good things is that the straps have Velcro and can be adjusted while you’re wearing them.