DCIS

DCIS

DCIS I have started this topic on behalf of new user LindaH

Kind Regards
Forum Host
Breast Cancer Care

Hi,

I go into hospital next Thursday to have a mastectomy of my left breast.
I have high grade calcifications so my only real option is to have the breast removed.
To date, I am doing ok …in-so-much …as coming to terms with having the mastectomy. I am 53.
I am calling it my ‘breast reduction’ . People pay good money to have a breast reduction, mine is free…

When the Macmillan nurse came to tell me the results of my byopsi; last Monday, it was like an out of body experience. She was talking to someone else, not me.
In fact, I laughed when she said it wasn’t good news, then it hit me what she’d said.
I cried, of course I cried. I sat there asking why me? After a few days of talking to people who have and are having, the same problems as me, it helped incredibly.
I rang the breast care helpline and spoke out my fears, my anger and they listened and listened and gave me the help I needed.

I’m one of the lucky ladies, this breast removal is to stop me getting invasive cancer.
I realised, I can do one of two things, I can sink…or swim…I’m going to swim.
I have a good husband of 23 years and a beautiful daughter of 15. so for their sakes; and my own, I’m going to pull through this.

I went to see my specialist last week, he didn’t really think I would be needing any further action …ie…Tamoxifen… and he said he will only be taking two lymph nodes away as a precaution, so I’m not too clear on the follow -up procedure…so please could I ask if anyone has had the same operation as me and what is the follow-up ?
At the moment, I’m not going down the path of reconstruction, I thought I would see how I cope…is this wise ? I suppose it’s everyones preference, I just want to get in hospital, have this taken away and start life a new.

Thank you
Linda

Hi Linda

So sorry you have had to join us. You will get a lot of support from everyone here. I know exactly how you felt. The only thing I would say is don’t be rushed into having a mastectomy without giving immediate reconstruction some thought. With DCIS there are not the same pressures to surgically remove it as quickly as possible because it shouldn’t have spread. If you see any of my posts you will read that last June when I was 50 I was dx with high grade DCIS that covered my whole breast and had a small amount of microinvasion but I was given a sentinal lymph node biopsy a week after diagnosis and when that was clear I waited 4 weeks for an immediate reconstruction.
Although you can have a reconstruction at any time the advantages are 1) that you only have one op 2) (the obvious) you are never without a breast mound 3) the most important to me, they can save as much skin as possible. I have only had my nipple removed the rest of the skin is there so in a low top or even in nipple tassels (a friend bought them for me!) no one would know.
Don’t panic, take time to consider your options. Cancerbackup have a long piece on reconstruction although it doesn’t explain well about skin saving ops and the need to find out about the abilities of the hospitals in your area.
Whatever your decision I hope all goes well for you.
Take care of yourself.
Love
Beverley

Thank you Beverley for answering my post.

I know what you mean about getting the reconstruction done at the same time as mastectomy, but I was told my nearest hospital for immediate reconstruction is in Manchester about 50 miles away from where I live.
The mastectomy, would be at my local hospital and all being well, I will be home within 48 hours.
If I went to Manchester, I would be away for…well…I was told two weeks.
I cannot tell you how much I hate going in hospital. I have been through so much surgery of one kind and another over the past couple of years, that I’m up to my hind teeth with hospitals.

I realise all would be under way, so-to-speak and done and dusted within a shorter period of time, but I really just feel I want to get this over and done with then think about my options when I’m feeling better.

I really do thank you for your advice, it is so reassuring to hear about other peoples experiences.

I’m pretty certain after a few months, maybe a year, I will head for reconstruction.

Thanks
Linda

Hi Linda
Im so sorry you have to join us…its a great site here tho and you will get wondeful support. I am 37 and have two small children aged2 and 4.

I too have just had a mastectomy and immediate recon for DCIS (3 weeks ago today)…i was only in hospital for 6 days and am recovering extremely quickly, back driving already…

I just wanted to second Beverleys comments regarding am immediate reconstruction…the ladies who i have met who had straight forward mastectomies in my hosp stayed 4 to 5 days…not an awful difference to mastectomy and recon…I think it is the skin saving part that one me over…

However its not for everyone…but just to reassure you ive been telling the medical profession i had breast cancer for 18 months before the came to the same conclusion…and i still had nicely contained cancer which had not spread anywhere. (see my profile)…so even tho i understand your feeling for wanting it gone…the medical reasons for delaying would not be effected!! One lady i know is waiting 6 months!!

One website i found useful www.optionsforbreastreconstruction.com and www.diepflap.com

Anyway i wish you luck which ever decision you come to.
Love Anna x

DCIS Hi Linda

I had a mastectomy only on 26th April 2007 and I came home on the 28th April. It depends on how long the drains are in for as to when you can get released from hospital.

Everyone is different.

My drains came out at 11.30 and I left just after midday…

I went in on the Thursday morning at 8 am went down to Theatre 9 am was wide again at 11.30. It really was that quick.

I have decided after years of back and for to hospital and numerous lumpectomies not to have a reconstruction. It is an option later if I want it.

I wish you all the best.

Thinking of you.

Hugs

Fee

Thank you Fee,

I sincerely hope my operation will be as quck as yours was.

I go in Thursday 7th at 7.30 am, so fingers crossed I could be ‘under the knife’ so-to-speak later in the morning.

How are you coping with your arm Fee ? Did you have lymph nodes taken out ?

I feel the same as you about recon, though my 15-year-old daughter said…“I wouldn’t go for recon if I were you mum, I would make people accept you for who you are and what has happened as happened, it won’t change who you are”…

Wise head on those young shoulders.

Thanks again Fee

Linda

DCIS

Hi Linda

I had the lymph nodes removed on my 4th DCIS operation.

Irrespective of whether you have lymph nodes out or not at the time of mastectomy from what I can gather from my hospice nurse the maximum you are in hospital for is 4 days.

I really wish you all the best for Thursday.

My partner and I are glad I decided not to have reconstruction. I am lucky. I am still here and am thankful.

I haven’t got my false one yet due to swelling and soreness. This is normal.

Apparently because I have had so many operations on the same site it will take a while longer to recover than someone who is having their first operation.

I am doing ok. My left arm hurts a little but because I had physio (which I have never had before) while in hospital for mastectomy I have gained more use of my left arm than I had following my 4th operation which was done during day surgery.

I am so grateful I am here and can help others.

All the best.

Thinking of you.

Fee

Thank you Fee.

I’m just worried…believe it or not…not really about the mastectomy, but more about my arm, because I already have Bursitis in my left shoulder and I’ve only just regained the use of it, by having cortisone injections.

I have told the specialist about this, so I know he will be careful…fingers crossed…

Thank you for your information, I will let you know how I get on.

Linda

DCIS Hi Linda

I lost most of the use of my left arm when I had my 4th operation. In those days they didn’t have physiottherapists coming round on the day surgery unit to give physio. Now things have changed and they do.

Physios usually visit you on the ward the day after surgery and let you know what you are meant to be doing and how to do it. If you are unsure of anything make sure they stay with you while you do your exercises to make sure you are happy.

On the day of my discharge I insisted on seeing the physiotherapist on duty to make sure what I was doing was correct and to progress on to the other exercises.

Even if they are busy insist you get your time with them. Don’t think of others think of yourself.

I am thinking of you.

Hugs

Fee

Good Luck … for Thursday. Hope all goes well for you.
Take care of yourself.
Love
Beverley