Recent DCIS diagnosis, mastectomy recommended. Single or double?

[somerset]

Hi Lynne.  I have had bilateral mx (not at the same time) without reconstruction.  Had the week of the op off work for both mx and then worked at home for a week.  After that back at work.  From other posts I have seen it takes longer if you have reconstruction and of course it is a very individual thing and depends how you feel. Obviously if chemo/radiotherapy required after mx that changes things but hope you won't need either.  Best of luck - hope you get a date soon and it all goes well.

[LynneJ]

Hi Janet..I found your email so inspiring..Thank you! I was diagnosed with both invasive and ductal cancer in right breast 2 weeks ago and had an MRI yesterday to ascertain whether I will only need one mascetomy. The initial biopsies were before Christmas so its been a lot of waiting! I just hope I won't have too much more 'hanging around' before the op. I have no idea at this stage whether I want or can have reconstruction at same time...I live with one of my 20 year old twin sons (his brother at Durham uni..miles from East London where we live) and I am worried about how I will cope post op...he isn't the most practical! And no family otherwise in London...mum is 93 next month and lives 80 miles away with her own health concerns. It was so good to hear your positive recovery..I want to believe I can return to work around 2 months max after op..I am being unrealistic?

[Janet1954]

Hi all thought it was about time I gave an update.Mascetomy and Breast reconstruction done on the same day 31st January. So here I am 6weeks down the line and how do I feel..the simple answer is WELL. Had a few problems not with the Breast but with the nurse at the hospital putting a plaster on too tight and end up with a huge blister..and we all know what blisters are like..but the consultant called me back to the hospital and it was redressed and presto it's healed...just tender but Only to be expected. Yes I did have a minimal amount of fluid which was drained off at the same time. Margins and Nodes have come back clear so yes I am a lucky. Went back to see the consultant last week who I might say was impressed with her handiwork. So now the next leg of the journey ...uplift on other side and reducing tissue on back near to back. At this present time I really am not sure about the Nipple reconstruction...and the only reason for this is that at the age of 61 the chances of me going topless on the beach..are slim to say the very least..the consultant is leaving this decision to me...anyone out there been in this quandary ? So what's it been really like....the tiredness has been laughable since I just took myself off to lay down on the bed...but I always made sure that I did a walk of 2miles everyday just to get the fresh air...remember the body will tell you what to do...not you I learnt the hard way thinking I was strong and then ended up back at square 1. I listened to my nursing friends about taking my pain killer (paracetamol /inbrprufen thought I could manage without not realising that they were anti inflammatory so got back on them pretty quick...How do I look...well if you didn't know that I had had the operation then yiu would be nine the wiser...yes one is lower than the other but soon to be fixed..so I joke with my friends that whenI am put in the OAPs home I will have the best boobs in there..no saggies for me. You may think that I am being flippant but this is the only way that I could get through this...I didn't want the hand that had been dealt to me...so I played it.... On another note my mum who is 89 was obviously curious about what it looked like..the look of shock was ...well I wished I had a camera...she thought it was wonderful....you see she lived through the times when it was Breast off,no counselling etc etc a change I am glad so say has happened. Stay positive, you want to have a good cry..go and do it...you want to scream do it.(preferably not in Sainsburys though) and tell people who care your worries..a trouble shared is a troubled halved...Light and Love to all who are just starting this journey

[Fuffs123]

Hi Coleymoo

Just came across your post and wondered how you and your family are. X

[June_BCC]

Hello Coleymoo

Welcome to the forums.  I'm sorry to hear of your diagnosis, the first few weeks are always difficult when coming to terms with your diagnosis and treatment.

As well as the forums we also have a support helpline where the staff can offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes,

June moderator

[Coleymoo]

Hi everyone,

I've been reading this forum for a month now and found this feed this morning and knew it was time to get involved. It was the Angelina Jolie comment that hooked me. I couldn't agree more!

I was diagnosed with high grade DCIS on 8th Jan this year. Quite a shock as a healthy 28 year old, with no family history and a 5 month old gorgeous baby boy. Mine presented as a lump, probably spurred on by pregnancy hormones. Similar to your stories, due to it's extent (whopping 13cm) mastectomy was my only choice. The waiting is unbearable and I also had lots of other tests to determine calcifications on the other boob but thank goodness it was clear in the end. I have too asked for the genetics testing, but wasn't completed before so didn't have to make a decision about a bilateral mastectomy.

I had my mastectomy last Tuesday (within the 31 day suggested guidelines). I think at the time of diagnosis I just wanted it gone, out of my life and didn't really think about the psychological repercussions. I had a permanent expander implant recon as I had DD boobies and my surgeon opted for skin sparring mx so this seemed the best option for me.

Looking down after surgery is definitely something you won't forget, I am very lucky that my surgeon was great and the fake one actually has a good volume already, without any fillings (although my chest muscle is paying for it at the mo!) I would definitely suggest researching or looking at pics of what they will look like, just for reassurance. it's so rubbish that we have had to go through this for a non invasive cancer. The only way I have got through the last month is to think about how much worse it could be and how much I love my husband and baby. Not being able to hold him at the mo is killing me but at least cancer isn't!

It is such a big decision to have a mastectomy and I wish I'd actually stopped trying to appear 'fine' to everyone before the op, as I was a mess with relief after. I was also in a ward with 3 terminal patients so I soon put things into perspective. As for the nipple - it was a good few days after when it actually occurred to me that it was missing! So not I will bother with recon for that - my scar is a upside down T so minimal too.

I am getting the results of the lymph node and tissue biopsy this week, in which I'll know if further treatment is needed. Surgeon has indicated radiotherapy so I'm preparing myself for that.

This forum has helped me so much over the last month. Cancer wasn't a word in our vocabulary so I was completely clueless when diagnosed and it's been so reassuring and comforting to know I'm not alone and this bugger can be beaten. Of course there will be good days and bad days, and I think we have to allow ourselves this - I was actually feeling guilty about getting upset but I think a few tears here and there are much healthier than the mini breakdown I had the day after. Bottling it up doesn't help and as others have said, there really is so much support out there.

Thank you for reading my ramble!

Coleymoo

[Kentstar]

Regarding time scales, I had surgery exactly 3 months from routine screening. There was a delay as the breast surgeon and plastic surgeon had to liaise to organise a mutually convenient date. Those were probably the longest 3 months of my life! X

[Kentstar]

Hi, I know I was absolutely distraught when told I had a pre invasive cancer and I had to have a mastectomy. I couldn't get my head around such a drastic method for something that wasn't going to kill me. I spent ages reading everything I could find on the net about alternative approaches. I considered a wait and watch approach but the fear was although it may never it also could turn invasive at any point. I decided I would have a double and implants. I went along to see the breast surgeon who absolutely did not see the point of putting myself through a double as there were no signs of Dcis in the healthy breast. I was led by him. He then persuaded me that a diep was the gold standard in reconstruction. Again I did lots of research before meeting the plastic surgeon and decided on the diep and a reduction at a later date. He informed me my BMI was too high for DIEP but offered immediate implant and suggested a reduction to my healthy boob at the same time, I was a j cup so would have been incredibly lopsided! I accepted his offer as I personally knew I did not want to be without a cleavage unless I had to. The good thing about DCIS and a mastectomy is that if the lymph nodes are clear and path results show no invasion there is usually no radiotherapy, chemo or medication required. I am now 2 months post surgery and recovering well both mentally and physically. The implant boob looks ok, just need the nipple, and is starting to feel like part of my body. There is a difference in size at the moment but it can take up to a year to settle. Also I am losing weight so the reduced boob should shrink back to closer match the implant. I would give anything for this not to have happened but it has and I am content I have made the right decisions for me guided by the medical profession who know best. I wish you well and you will find support from others on this forum who "get" where you are at any point on the journey. Stella x

[Yvie178]

Hi

I was diagnosed after 1st mamo last January with high grade dcis 5cm - was told mx was only option as small busted - so had mx 13th feb last year with immediate recon with implant and strattice.  Skin sparing - but lost nipple. I had an uplift on good boob to level them up.  The implant looks fine in clothes - scar is across the boob to where the nipple was so quite large.  I was going to have nipple sharing but decided against it following fat transfer from my thighs to a large dent above my implant and an uplift.  But I am going to have a nipple tattoo at end of month, currently using stick on nipple  which are very good - they do not fall off !!!!  Don't expect to feel the same as before the op - I am always aware of my implant - its just different.  Like they say you have a new normal. 

[saffronseed]

Hi  in answer to your question I had a Diep reconstruction (delayed).  At the time of my mastectomy I wasn't in a good place to make such big decisons on what type of reconstruction I wanted so I opted to just get my breast off (get rid of the cancer) and then have time when feeling a bit better and do a bit more research on what is best for me.   I chose a DIEP and had it approx 15 months after my surgery (the downside being that i was with only one breast for a time) the upside having the time to think about what it was I really wanted.   I have had an uplift on my good breast and also a new nipple and tattoo which makes my breast look 'normal'  again the nipple wasn't done until a few months afterwards to ensure that it had all settled and to ensure eveness.  I am so pleased with the end result.    Mine had spread to my lymph nodes and so I had to have all my nodes out and chemo and rads after my mx.    Do you know if you are having rads after your mx?  You need to ask and find out what effect if any this would have on an implant.   Good luck with it all  xxx

[Lablover]

Hi there - i am in the same position as you i'm afraid, we are both members of a gang we made no decision to join!

I am having surgery on Monday next week for a double mx  due to extensive DCIS was not given the option of anything else due to the extensive nateure.  I have opted for no reconstruction, but this is purely a personal choice - this is a very personal dedison and you will have to steer yourself away from everyone who will want to give you their opinion !  this can be rather irritating... I am fed up with comments on Angelina Jolie - good for her! but she is not me and i cannot afford her plastic surgeon.

Google pictures of reconstruction and no reconstruction, i am aware that some people who are not happy with the stick on nipples opt after a healing process for a tattooed nipple (not for me that route!) and i wouldbe worried about the stick on nipples - my luck they would fall out while in the supermarket!

From researching various sites it appears that there are targets for surgeons to meet of around 31 days post diagnosis for surgery (at least in Wales) my date came for day 33 so that should give you a bit of an idea on time.  To be honest the worst part of the whole thing has been the wait for the date, i have adopted the stance that, contrary to everyone i know that i am in denial, i am not in denial but made a decison not to worry until i know the prognosis following surgery as until then i won't know whether or not it is in the lobes...... but my bcn did state that my 'attitude' will change and i will probably be one of those who loses the plot once i go into hospital on Monday (to be honest lack complete stupid comment made me more determind not to lose it!) but we are all different.  I will admit to right now appearing to be a swan - gracefully going through the last 3 weeks, home, family work etc whilst under the surface my feet are flaying around like crazy!!!! i guess the reality of my situation is that i am trying to keep everything together for my husband and two sons (22 & 24) and am more concerned on hiw this is affecting them more than  being concerned with how it is affecting me (but i guess at some point this will change!)

Just try to read everything you can, this forum has been brilliant especially the thread on the stupid things people say to you....i have had almost every comments and reading other peoples thoughts on this has made me smile and rather more comfortingly aware that i am not on my own going through this, saly there are a lot of us.....

I hope you strat to feel a bit better, not happy none of us will feel happy, but if you take on board as much as you can from this site and other reading matter, you will feel a bit more in control - you can't change what is happening to you right now, but you can feel more confident with knowledge and a little less scared, and remember that I and lots and lotsof other cyber friends whether on the same journey at the moment or further down that path are here if you need us

Melanie x

[Cookieznmilk]

I was recently diagnosed with High Grade DCIS. Surgeon is reccommeding Mastectomy because the area affected is too large. I'm very upset with this whole thing, and find myself crying all the time, I'm pre-invasive, so I know I'll live through this, but I'm so mad that I will loose my Breast! I know it's vain, but it's important to me. I'm super glad i've been getting mammograms.

I have two huge questions, and can't seem to make up my mind on the reconstruction. Probably will do the implant, but I'm really worried it will look funny with one real, and one fake. Sad that I'll loose my nipple, but they will spare the skin. Anyone have nipple reconstruction? How did that go? How do they look!

Other question: I have done some research, and a lot of people go ahead and get a double, especially if they turn out to have the gene? My results aren't back yet, but I'm hesitant as that seems really aggressive. How do you decide?

Just a side note. I'm feeling frustrated with how long this all seems to take. It's been almost a month (if you don't coulnt the 2 weeks of testing before diagnosis) and I still don't have surgery scheduled! Argh! I don't know how you make such a life changing decision so quickly!