DCIS - Happiness beyond

[kathrynb]

Hi CC yes my date is 1st may. Will pm you.
Hi Daisymoo well done on getting through Thor mastectomy. I am awaiting my surgery on 1st may diep immediate reconstruction. Conorchloe and Ezzie have both already been through it and have both have positive experiences of the surgery and recovery so that is good to know. I wish you all the luck in the world for your results. Let us know how get on please. Kathryn xx

[Daisiemoo]

Pleased to read this thread, just home after masectomy and have delayed reconstruction until my results in 10days time and then see what is what. Good to know time scales for the DIEP / TRAM flap not sure which one yet I will have but one of them and good to read about recovery etc.xx

[Conorchloe]

Hi kathryn
How are you feeling? Have they given you a date yet? X

[Ezzie1698]

Hi Kathryn,

Your family sounds very like mine.  We have had numerous family celebrations in rented cottages around the country.  Just remember to let other people lift your bags, groceries, bottles of champers, etc. for you.  Then sit back and enjoy the party!

Re clothes fitting or not.  For the first week, my abdomen was a bit swollen so I wore tracksuit trousers.  When everything had settled, my trousers were then too big around the waist/hip line and slipped down a bit.  I needed belts with everything.  I was only borderline for a Diep/Tram for not having enough spare fat, so the extent to which your trousers, etc. no longer fit will be dependent on how much of a ‘tummy tuck’ you end up with.  I hope this makes sense!

Ezzie. X

[kathrynb]

Sorry Ezzie another question - you say some clothes may not fit - is that because of swelling in tummy area? Keep reading your message over - really quite inspirational in terms of all you have managed to do. Xx

[kathrynb]

So sorry predictive text meant to say Ezzie- should have read back! X

[kathrynb]

Hi Eddie thank you so much for this. I read it just before bed and it really reassured me and helped me sleep. It is so good to hear of your positive experience in a bad situation. My Op is scheduled for 1st may latest and funnily enough (bearing in mind your comments about your mum's 90th) it is my dad's 80th and also my parents diamond wedding celebrations on 12th may. I had hoped my Op would be sooner as I am worried about being well enough. We have hired a house by the sea in Norfolk for all the family. Fortunately all the catering is in hand but I absolutely HAVE to be there with a smile on my face so knowing how well you did really heartens me. Equally your comments about getting back to normality with work etc. I am scheduled for 2 months off but I wouldn't want it to be longer. Good idea to fill the freezer as a distraction. My husband and I are quite traditional over roles at home. He is more than capable and very supportive but he is also self employed so I am conscious of him having too much on his plate. Have two grown up daughters. Neither live at home. My eldest is in Dubai but will be back anyway for the family celebration on the coast and my younger daughter lives locally. I know they will do anything for me but I don't want to put on them too much. Would love to think I will be well enough mentally to just enjoy their coming. Very best wishes to you for your continued progress. You sound like a lovely positive person xxx

[Ezzie1698]

Hi Kathryn,

Another vote for Diep from me too and I would also endorse what the other ladies have already said.

I am five months post Diep (except it was a Tram because my blood vessels were not good enough when it came to the crunch) following a delayed reconstruction.  I was diagnosed with a large high grade DCIS in May 2017 for which I had a skin sparing mastectomy.  I wasn’t a good candidate for immediate reconstruction due to another minor medical condition so I had a temporary implant (ghastly shape and solid) which was later exchanged for my abdominal flap (lovely, soft and squidgy) five months ago.  My mastectomy was my choice so I think this has impacted on how well I have recovered - with a huge amount of positivity and normality.  Surgery has been my only treatment.

One week post Diep op, I had already resumed my social life (my drain went too) and I had also started to do a bit of work, albeit from home and certainly not a full day.  By 4 weeks post-op, I had made and iced 3 large birthday cakes for my Mum’s 90th birthday - don’t ask how many parties she had!  After 10 weeks, I resumed going to the gym but I did find it hard getting changed in public with the extent of my scars.  That did make me cry.  Four weeks ago, I went skiing with family and friends for a week and this felt like my personal Olympics!  This week, I have picked up my tennis racquet again and I even managed to get changed in public.  If Victoria Derbyshire can display her war wounds, so can I!

I wore my normal clothes very soon after my op.  I wore Spanx type pants for about 10 weeks which provided protection against any zips, etc.  You may find however, that some clothes no longer fit well!

I need another couple of ops for symmetry, a new nipple and filling in a divot at the top of my reconstructed boob but I am not giving it too much thought.  I am determined that BC is not going to rule my life.  I can’t mash potatoes easily yet due to missing that bit of muscle in my stomach but that is as far as BC is going to impact on my life!

I hope you get a date for your op soon as you can then plan.  The uncertainty will not be helping at present.  Do you do the cooking in your house?  How about some distraction activities like filling the freezer?  If I can help any further with questions, please do ask away.  I will be very happy to respond.

Ezzie. X

[kathrynb]

Hi nicolad817 thank you for message. Kind of you to take the trouble. Delighted to hear that despite difficulties you have no regrets. I am sure it is very difficult and frustrating to take time with recovery when all you want is normality. Regarding the brain fog can I ask if you have needed any further treatment which is contributing to fatigue? Also how soon after surgery were you able to wear normal clothes - in particular jeans after the diep? Also was wondering how you are emotionally? Probably sound like such trivial questions. I am anxiously awaiting my surgery date. Have been told def by 1st may. I desperately long for normality. My husband thinks I should be making the most of my time before the Op but at the moment this wretched thing has totally taken over my mind! Best wishes and thanks again Kathryn

[nicolad817]

Kathryn,

I'm 4 months post DIEP and despite having some complications, I would do the surgery again in a heartbeat.

I'm pleased with my breast shape and despite not being able to feel it, when I do touch it, it feels like a natural part of me. Hospital was the shortest and I have to say, the most difficult part but there are so many people looking after you, keep a postive mental attitude and you will be just fine 🙂 
Getting home, it helped to have my husband shower me and redo dressings and pull me out of the car, but I found ways around everything else to regain strength and confidence. 

I'm still recovering, I still have brain fog, I still get fatigue, I get massive headaches BUT I have returned to work, phased at the minute and working up to getting there full time, and I have a social life and have picked up hobbies BUT again, this is a phased approach too and I only do what I feel up to at the minute. 

What surprised me is how much this has affected me. I thought I could just bounce back into everything and it has not been the case. I've had to learn to be patient and this is what I've struggled with most as I was always on the go before I was admitted for surgery. It's frustrating not being able to do things, not being able to concentrate and not having the same attention to detail I once had, but I've accepted it and I'm getting on with what I can do 🙂 

Allow yourself time  x 

[aqua]

Hi Kathryn, you are very welcome. They added extra skin to my nipple area at time of mastectomy/reconstruction to make me a new nipple later but it died and fell off. My big op was nine hours long, and the new nipple was made with the extra layers of skin that they rolled over and over until it was big enough - that was after my breast started healing.

I basically had enough of ops etc and hence decided not to have the nipple reconstructed. I also had the areola tattoed but that also gradually faded - I chose not to have that done again either.

I am happy with my reconstructed breast, my plastic surgeon did a very good job - still get nice comments to his handywork when I go my yearly mammo on my other breast 🙂

Yes, I am happy that it is all behind me and that the breast is still as they made it - whether I would the same op again, I dont know. Simply because I was quite poorly but the breast itself feels so natural x

[kathrynb]

Hi Aqua thank you for your kind reply. Glad to know your reconstructed breast is lovely. What happened with the nipple? I assume it was an artificial one which feel off? . Did you ever have it reconstructed again afterwards?Would you be able to say that the whole experience is behind you now and you are happy? I certainly hope so xx

[aqua]

Hi Kathrynb

I had a Tram Flap reconstruction in 2010. My reconstruction is still lovely and soft but heavier than my natural breast. My nipple fell off few weeks after it was made. The reconstruction is a little bigger than my natural breast. If you any questions then please ask away. All the best and I hope your op goes well. 

[kathrynb]

Thank you both for your helpful replies x

[sammycc]

Hi Kathryn, have you used the someone like me service breast cancer care run? I spoke to 2 lovely ladies when I was first diagnosed. It was so helpful hearing from 2 ladies, who were in a very similar situation and stage of life and who had come out the other side.

I am now 3 months post mastectomy (with immediate implant recon) and just had surgery to give some symmetry on my right side. I feel I’ve a long way to go coming to terms with it all, but I can say I feel physically I recovered quickly from the mastectomy and was back doing things with my young daughter much quicker than I’d anticipated. Before this second surgery I’d also gone back out running and have started finding my new normal x

[Conorchloe]

Hi kathryn
If you type in diep in the search line there may be more ladies on that thread been or going through the similar feelings and experiences. Although ive had a look and the page looks slightly different than coming on this thread. I dont know if its the correct way to access it.

You sound like you are past the major hurdle of making the decision of which op is best for you personally. Well done! You have a plan and will be well taken care of from hereonin xxx

[kathrynb]

Hi ladies. I have been a member a few weeks and started thread called 'desperate newly diagnosed with DCIS '. I received many helpful and kind replies including a couple of ladies who replied personally to which I am eternally grateful. At the moment i am awaiting date for mastectomy with DIEP flap reconstruction. Mortified about hospital stay and all surgery but from replies I have received know that I CAN AND WILL get through it. What I would be really really grateful for is for stories not necessarily about the immediate experience but hopefully happily beyond that. Is there anyone out there with similar treatment who is now feeling happy and positive and really enjoying life again? Happy with the way they look, back at work, socialising, good personal relationship etc etc. It would help me (and perhaps others) so much to hear positivity beyond what we are presently going through. Thank you in advance. Xxx