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Diagnosed. With DCIS and need a mastectomy

29 REPLIES 29
Kentstar
Member

Re: Diagnosed. With DCIS and need a mastectomy

Hi, I am 16 days post mastectomy, implant and reduction to other boob. It is surreal. I was so scared and angry that I had to go through the surgery for DCIS that might never have become invasive. However, I know I made the right decision as I would have continued to be scared if I had followed the watch and monitor approach. The surgery wasn't as bad as I anticipated and I am a real wimp. My daughters cannot believe how well I look and how little pain I have encountered. I have discomfort and and it has been frustrating to have limited mobility but it's only day 16 and I am finding every day I can do a bit more. I could only have an implant because of my BMI being too high. I am relatively pleased with it so far. I feel like a teenager again with two pert breasts. The reduction is lovely but is different to the implant boob but looks fine in a bra. I am sure once swelling and bruising go down they will look even better. I am now approx a 40dd which should become smaller, I was 42j.
keepmumsane
Member

Re: Diagnosed. With DCIS and need a mastectomy

Hi ladies,  im a week past a single mastectomy and agree it Still seems surreal. 

I have a district nurse visits and empties my drains...got them removed yesterday. I feel sure someone needs a nurse more than me, but they assure me I have had major sugery and need them just as much as everyone else on their list.

The pain under my arm and occassionally across my chest, if it was my leg I'd just limp around a lot, but instead I find myself tired and slightly frustrated by things that are oddly tricky....filling the kettle -heavy,  washing my hair, dressing in clothes! 

Its much easier now this stage is done though.  I know I've a lot of healing to do and Im also in line for chemo,but waiting is so very hard. Xxxx

People have said 'you're so brave and calm' but personally Im going with stoic and leaning on these boards and all of you to help carry me over this... it would be dreadful without you.

 

Mastectomy is surprisingly not the hideous disaster I expected, my children told me I have a swapped a chest for a breast and didnt run away screaming. My partner is much the same. I was given a softee which I experimented with under a camisole yesterday and it looked frighteningly normal... far more surreal than the t shirt without the softee ..lol 

Hugs lovelies, this is a random thing in our lives but I am grateful every day you're here to talk too. Xxx

Sandie

 

Shortbread2
Member

Re: Diagnosed. With DCIS and need a mastectomy

Thanks .
Lucyq
Member

Re: Diagnosed. With DCIS and need a mastectomy

Hi shortbread

Glad to hear things are on a positive trend for you, and that you were able to reach a decision on your reconstruction, been investigating this myself and it seems very confusing, hopefully all will get clearer as I get closer to my op.

I completely relate to you changing emotion, I too keep swinging between feeling lucky that the prognosis is so good, to then burst into tears at other times when it seems such a lot to take in.

Sending you good and positive vibes for 13th.
Shortbread2
Member

Re: Diagnosed. With DCIS and need a mastectomy

Ladies

I started this post almost 5wks ago, it's seems like a life time ago. There was lots of discussions and research over type of reconstruction and whether to have a bi-lateral . I made the decision . I am booked in for a DLEP on one side only on the 13th of December. I find the whole thought of procedure daunting and also worried what will be the final pathology report following mastectomy. So far it's very positive following lumptemomy and a sentol node biopsy it's been non invasive cancer with nodes clear.

I am trying to keep very positive , I keep telling myself I am very lucky- caught early could be a lot worst but On my darker moments I find it hard to reconcile with the next steps in the process . Mastectomy feels such a massive outcome. Its the reality setting. I am desperate to move on to next stage , the waiting is the worst. At least I will be ready for Xmas in 4 days time as whatever is left to be sorted before I go in for procedure will be left.
A,random streams of thoughts I know.


Helenbythesea
Member

Re: Diagnosed. With DCIS and need a mastectomy

Enjoy the skiing, we went to Harrogate for the weekend before my op. Fabulous time....but the surreal ness goes with you!
just fab to have couple time and no family
Lucyq
Member

Re: Diagnosed. With DCIS and need a mastectomy

Thank you Yvie for sharing your recovery, I am one of those people who like to know in advance what I am facing and this has really helped

It's good to know that this surreal out of body experience is natural,

Val it looks like you and I will be having our ops about the same time, I am also booked for jan, although have a lymph node biopsy this week. Talked with my husband about Xmas we have decided to go skiing last minute to take our minds off things, now I know what to expect from recovery really glad we have decided to do this
Nelliealice
Member

Re: Diagnosed. With DCIS and need a mastectomy

Hi Lucy

I feel exactly the same I was diagnosed 28/11, but feel as if I am talking about a stranger. My surgery is after christmas . its surreal.

 

Val  

Helenbythesea
Member

Re: Diagnosed. With DCIS and need a mastectomy

Yes absolutely normal
Yvie178
Member

Re: Diagnosed. With DCIS and need a mastectomy

Hi Lucyq
Mx with immediate implant and mesh recon feb 14, went back to work 7 weeks later full time, worked from home 4 weeks post op. Driving at first quite painful as left sided mx so changing gear utilised pec muscles so sore and just plain weird sensation. Initially it felt like a bowling ball was strapped to my chest and was very tight and swollen. Was painful for the first 6 weeks and was on max painkillers which did not touch the sides the first few weeks, ibuprofen, paracetimol tramodal and acupan. Sleeping on side was painful, felt like I had to prop up the implant, it is even now not completely comfortable to sleep on slide. Implant boob would swell up if did too much and was very tight, hard and uncomfortable. There was massive bruising the whole boob was black and blue. However it did get better, and though now 10 months on I am still aware of it, and certain movements still feel weird it's fine, the fat transfer I had to fill the dent above the implant feels strange almost as if it is sitting on top of the implant making it heavier. The wounds healed quickly - the mx scar was glued and there were internal stitches some on which did make their way out of my skin. The nipple was removed but this healed up quickly. I was told not to drive for 6 weeks, not to carry or pull washing from machine for 6 weeks and not to hoover for 12 weeks. I found it difficult to push a shopping trolley, or carry anything too heavy. But it is doable! Anything else you want to know just let me know.
Lucyq
Member

Re: Diagnosed. With DCIS and need a mastectomy

Hi Yvie it is good to know I am not loosing my sanity. I wondered would you share what the recovery time in terms of pain and discomfort were after your mastectomy?
Yvie178
Member

Re: Diagnosed. With DCIS and need a mastectomy

Hi Lucyq, what you are feeling is perfectly normal, 10 months on it still feels surreal at times!
Yvie178
Member

Re: Diagnosed. With DCIS and need a mastectomy

Nipple sharing is where they cut your good nipple in half and attach it to your fake boob.
Lucyq
Member

Re: Diagnosed. With DCIS and need a mastectomy

Hi I am new to the forum.just diagnosed with dcis in 3 places on my left breast. Recommended for a mastectomy in January. I cannot tell you how encouraging it is to here one year on and you are doing all the activities you want.

One question this feel like an out of body experience I hear them telling me I have bc and need a mastectomy but it feels like it's happening to someone else. Is that normal?
riversidedawn
Member

Re: Diagnosed. With DCIS and need a mastectomy

Oh the things we discuss with ladies we've never met !!! I hate tattoos but a nipple is a bit different, is that the height of vanity, and how much does it hurt? What's nipple sharing? I'm quite happy without nipples, they're such a pain in t-shirts!!
Helenbythesea
Member

Re: Diagnosed. With DCIS and need a mastectomy

Yes i have been lucky, i was quite small, not too droopy, and was very symmetrical. Also fortunate to have wound down side of boob cos of where bc was, so was able to keep a nipple, lifeless but mine
Yvie178
Member

Re: Diagnosed. With DCIS and need a mastectomy

Riversidedawn

I lost my nipple also but I have recently purchased a stick on nipple to make me feel more normal and these are surprisingly good.  Got them on line and am wearing everyday.  Hopefully when you have your uplift op in April they will sort out a nipple tattoo or sharing for you.  Have a look at the stick on nipples though it may help make you feel more normal.

 

Yvie

riversidedawn
Member

Re: Diagnosed. With DCIS and need a mastectomy

Spoke to my surgeon today and she said we'd have to wait post radio which is April time. Hopefully new boob will drop a bit. She talked about implant in good boob or the sort of thing you've said. Don't think I can be bothered about nipple positioning as I've lost the other through masectomy.

Helen by the sea, I could never go topless again even walking from bathroom to bedroom! Too much of a wonky donkey and nipple less !!
Yvie178
Member

Re: Diagnosed. With DCIS and need a mastectomy

Hi Riversidedawn

I had my mastectomy and implant recon with mesh in Feb 14 and the surgeon said it was best to wait until all settled down before she did the uplift.  So that was done end August 14 - alongside a fat transfer to the implant to fill in a massive dent above the implant.  The uplift was a complete doddle - hardly any pain at all - though this may have been masked by the horrendous pain in my thighs where the fat was taken!  The scar is a lollipop scar - so there is a line up to the nipple and around the nipple aroala area which was cut off and resited higher on the breast - she also reduced the breast slightly as after all the swelling had finally gone done on my fake boob it was slightly smaller.  The scar is not that bad and the difference in the boob is amazing!  I have opted to leave my nipple alone now and not use it for the nipple sharing that my surgeon had previously planned as I could not face any more surgery - and the nipple does seem to have some sensation - not masses but I know its there so I am happy with that.  I had two weeks off work post op and went back full time after that.  Have not had any problems with the lifted boob and am really pleased that I decided not to live with the different levels - it really does make all the difference.  Now as for fat transfer - am not sure I could hand on heart recommend that procedure to anyone as it is very painful and the results are unknown.  I still have most of the fat transferred but I also have permanent nerve damage in one of my thighs and a totally numb area which they do not think will improve now.  I had my uplift privately so I could have the op at any time so it will depend on waiting lists if NHS, so I would get your name on that list and go for it as it will make you feel so much better!

Helenbythesea
Member

Re: Diagnosed. With DCIS and need a mastectomy

One year on scar pale brown, still being oiled, down side of boob. I was symmetrical before op nd quite perky, with nipole sparing surgery looks ok now. Took four months for swelling to go down, skin swollen. Could go topless ob
n beach, but nipple lifeless.

Helen by the sea
riversidedawn
Member

Re: Diagnosed. With DCIS and need a mastectomy

Yvie I'm interested to hear about your good boob uplift. I had mastectomy with implant and mesh in September. Still waiting for swelling to go completely but looks too perky to me and my other boob very droopy but comparison! My surgeon said she can sort if out later if I want to. How was that op, how long did you wait, what's the scar like etc???
Helenbythesea
Member

Re: Diagnosed. With DCIS and need a mastectomy

One year ago had implant and mesh. Really pleased. Only one scar to heal, and post operative swelling was bad for me so pleased only one body part affected.
just got back from school camp and did all activities including climbing and archery, which could not do if back or tummy cut. Fab time
Yvie178
Member

Re: Diagnosed. With DCIS and need a mastectomy

I was diagnosed following my first mammogram which was end December 13, so I am due a mamo in January next year - though during my uplift op they reduced the size of the boob and the tissue was sent to the lab for testing but that is the only time anyone has even mentioned the other boob!  I have got to go back to see the consultant every 6 mnths for her to check the recon for recurrance and have a mammo  every 12  months for 5 years.  I take comfort from the fact that they have a mammo to refer against now for the good boob so any changes will be more obvious (I hope!) But apart from that I don't think that there is much else you can do but trust that you are in good hands! 

Shortbread2
Member

Re: Diagnosed. With DCIS and need a mastectomy

Hi
Thanks so much for your response . I am definitely more in favour of the implants just so much less surgery however the idea of a nice flat stomach has crossed my mind- every cloud has sliver lining or Something like that . Shirleyj and your feedback has definitely giving me a spring in my step this morning.
Just wondering if you have any advice for getting some reAssurance that their is nothing awaiting to erupt in other breast ? Did you guys rely on mammogram or something else ? Had you a pet or MRI scan of good breast ?

Yvie178
Member

Re: Diagnosed. With DCIS and need a mastectomy

Hi I was diagnosed with 5cm of high grade dcis and was told only option for me on nhs was LD with implant, I had read about the mesh but had to go private to get this in my area. Luckily had insurance so that was my choice. 8 months on and 2 months post uplift to good boob and fat transfer to dent in false boob, doing ok. It still feels alien at times a constant awareness that it is there but the constricting tightness post op has eased, the swelling took a long time to go so it takes a good few months before yo can see how it will finally look. I had to have my nipple removed and will be having a tattoo in February as cannot face any more surgery - I found that swelling increased if did too much in the first 6 weeks and was told by surgeon not to hoover for 12 weeks or to do any upper body exercise that engaged the muscle. I worked from home 4 weeks in and went back full time 7 weeks after op. I am pleased with the results especially since my symmetry uplift and though the fat transfer was very painful I am pleased that most of the massive dent has been filled in and I look less like a shark has bitten me! It is definitely a quicker op to recover from but you are still losing a breast, and the replacement is a breast shape not a breast. On the upside it is incredibly perky!
Shortbread2
Member

Re: Diagnosed. With DCIS and need a mastectomy

Thank you so much Shirleyj for your advise . I have another appt with my breast surgeon on Tuesday . I have so many question . The list is growing ! I meet someone today who had a breast reconstruction done using her tummy skin and tissue to make a new breast . It was amazing looked so good . It has helped to take away the fear. I am going to ask my BC nurse if she can put me in touch with someone who has implants . I am worried about my other breast , going to see what test they can do to check nothing in it. One of the doctors said I probably had the dcis for 3 yrs. nothing had been picked up on my previous mammogram . Feel like I am time bomb waiting to go off!
June_BCC
Member

Re: Diagnosed. With DCIS and need a mastectomy

Hello Shirleyj

 

Welcome to the forums.

As well as the forums we also have a 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

Shirleyj
Member

Re: Diagnosed. With DCIS and need a mastectomy

Hello, I was diagnosed with DCIS 3 weeks ago and had my mastectomy to right breast with immediate reconstruction using an implant on 13 October. Two weeks on I am able to do most things e.g. Cook, load dish washer, wash myself, carry light objects. I have to say I still have one drainage bottle in which will hopefully be removed this week. Even though I am able to do most things, I am doing them much more slowly and carefully due to the drainage bottle and still being a bit sore. Hope to go back to works in two or three weeks. I did not have the choice of using fat from another part of my body to create a new breast. All in all I am pleased with my implant and in fact feel it is less likely to be affected by me losing or putting on weight. Of course the advantage of using a part of your own body to reconstruct is that it is more natural and you are less likely to have your body reject it. I would say, keep researching and get as much advice from your consultant and this forum as you can. The very best of luck to you and whichever option you choose. Lastly, post-mastectomy, please, please, please listen to your body - if you need pain relief ask for it, if you start to do something like lift something or you try and make a cup of tea and find you're still too sore, then say so and get help. If you need help at home, ask for it from family, friends, neighbours etc. I have found everyone is really happy to help. Take care and I hope you are given the time to recover in your own time.
Janet_BCC
Member

Re: Diagnosed. With DCIS and need a mastectomy

Hi Shortbread2

 

Welcome to the forum.  I'm sure other members will soon be along to offer you some support.

 

I thought you might also be interested in our "Someone like me"  service.  They could put you in touch with specially trained volunteers who have had each procedure and would be happy to share their experience.  I've attached a link for more information:

 

http://www.breastcancercare.org.uk/breast-cancer-services/someone-talk/someone-me-phone

 

I hope this helps.

 

Very best wishes

 

Janet

BCC Moderator

Shortbread2
Member

Diagnosed. With DCIS and need a mastectomy

Nearly 4 weeks ago my life was turned upsize down. Since I turned 40 (I am 46) I have annual mammogram due to a slight increased risk of BC as mum had BC at 49 (34 years ago). Last year them found a cyst but all was ok. So this time when I got a call from my gp telling me them found areas of calcifications on my right breast I didn't worry too much it would be something of nothing I thought. After more mammograms, ultra sounds,stereo static core biopsy , lumpectomy , I have been diagnosed with high grade DCIS. Unfortunately it is extensive and cannot get clear margins from the lumpectomy so my only option now is to have a mastectomy . I have opted to have immediate reconstruction . I am a candidate for either reconstructions with
1. Implants with mesh
2. Tissue from stomach as implant .

Really looking for some advice of anyone out there has either type of reconstruction . I just want to make a decision and move it with it. Which reconstruction did you opt , what was your outcome?

Any comments or advice would be great