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