DCIS - Mastectomy or Lumpectomy

MelMac

Hi everyone, - well here I am.... joining this amazing group of supportive women and wishing I wasn't here!!

I have just been diagnosed with DCIS (2) in one breast.  My mum and her mum both had BC, so there is a history.
I am seeing my doctor tomorrow to get a referral for MRI and to a breast surgeon.

At this stage, it appears (advice from the breast surgeon at Breast Screen) is for either a lumpectomy with radiotherapy or a mastectomy.  The tests so far indicate that it is contained... I can only hope that it the case and there is nothing else lurking that has not yet been identified.  (deep down though, I kinda feel like there may be more to it!).

I am researching as much as I can to help make this decision.

I feel like going down the mastectomy road, but of course that has its own implications.  Also, do I go flat or have reconstruction.  Do i bite the bullet and have a double??

I so totally don't understand the ramifications, side effects and both physical and mental emotions!  So much to absorb and take in.

I worry about how to choose a breast surgeon who will be able to guide me.  How soon do I need to get the surgery and how long will it take for me to recover???

I am frantically reading through all your posts and getting inspiration from everyone who has walked this road before me!

I know that no-one can provide me with answers, but I guess just getting it out into this forum will help me to choose the path forward.

Thanks in advance to everyone who has already shared their stories.  Compared to many, my issues are rather insignificant!

Cheers
MelMac

Afraser

Dear @MelMac

Commiserations! You don’t want to be here but welcome nevertheless. One of the many things to hit you when first diagnosed is the bewildering range of options and what ifs.  Most of us have found benefits in taking one day at a time.

First find your surgeon. Your GP’s referral may be spot on. The new GP at my clinic (she turned out to be excellent) googled for someone ‘who knows more about breasts than I do’. Her first hit couldn’t see me for a month, her second could see me in two days. Nearly ten years later, I still see him annually, a terrific surgeon and exactly the right temperament for me (factual and funny!). If you really don’t feel comfortable, it’s worth getting a second referral.

Your surgeon is well placed to advise on options (you don’t have to make every decision immediately) and may make a referral to an oncologist. Same principle applies - you will spend even more time with your oncologist so it matters that you are comfortable with each other. Trust counts for a lot. 

BC can be a bit of an an arduous journey but chances are there’ll be a day when it all seems a long time ago. 
Best wishes.

TonyaM

Hi @MelMac,
I’m so sorry you find yourself here. You are at the scary,anxious start of this crap journey.I will say that every decision you have to make is an awful one and neither right or wrong.Also it will be difficult to predict how you are going to react/feel along the way.The odd meltdown here n there is normal.
In a nutshell- In my 40’s I had a lumpectomy and full node clearance for a 2cm invasive cancer, followed by radiation.(no family history)I was a mess-didn’t want to lose a breast and wanted cancer out of me real quick.My breast was never the same-rock hard,don’t touch it!! I was left with lung scarring from radiation.So 7yrs later(in my 50’s) cancer comes back in the same spot-had to have mastectomy and chemo. Can’t have implant cos of previous radiation. Don’t want recon anyway because now I’m paranoid and watch my scarline like a hawk! It’s now 12yrs on (in my 60’s) and I’ve just had the other breast removed to be flat.My remaining breast kept growing and I was sick of being so lopsided and the worry. I’m not sorry but I’m not glad I did it- it’s just different.The recovery for a lumpectomy or a mastectomy is very similar and really not too bad. You’ll possibly be in hospital for 2 or 3 days and have a drain. Pain is managed with drugs for a few days and then Panadol helps after that. I was pretty good after 2wks and allowed to drive after 3wks. I doubt that I’ll do recon at my age- boobs don’t seem quite as important as they did in my 40’s. I’m still adjusting to being flat and am wearing smaller soft forms in Best n Less bras which I’m really happy with for now. Ultimately, go with your gut after you’ve done your research and asked all your questions.Best wishes to you hun xx

Julez1958

Hi there
yes the first few weeks following a BC diagnosis are overwhelming .
I found it helped to take my husband to all my medical appointments as I only remembered at most half of what was said.
I had a large (5.5cm) lobular camcer and when the full size became apparent my very experienced breast cancer surgeon said that a lumpectomy was not a realistic option , a mastectomy was the recommended course.
I took his advice and ended up having a double mastectomy ( that’s another story)  with DIEP flap reconstruction.
It wasn’t in my lymph nodes so I was not recommended chemo only radiotherapy followed by at least 5 years of hormone therapy.
I took all the advice and am now 2 years down the track and feeling more like the “old me “ every day ( although it f course the old me will never really come back fully).
You will find lots of good resources on this website including this forum.
I found the emotional impacts of the diagnosis just as challenging as the physical ones and had a couple of sessions with a psychologist who specialised in cancer related stress which helped.
Take care.🌺

MelMac

Thank you so much @Afraser, @TonyaM and @Julez1958.

It is very daunting, but hearing your stories is certainly helping me.

I see my doc today for the next steps......

I have looked up the DIEP Flap reconstruction - another thing to consider!

Hopefully after today I may have a better idea as to timeframes... but I will wait and see.

Hope you all have a lovely day - and thank you for taking the time to respond