Back In Shock Again.

Hi , I am new here. I am 53 fit and healthy, lap swimmer, rock singer. I was supposed to be getting married this year and will be welcoming my first Grandchild in July. There are so many reasons why this shouldn't be happening. I guess we all have those.

I was diagnosed with High Grade DCIS in two small calcified areas spanning 30mm in my right breast, on 12th January. I had already waited all over xmas to return to breastscreen for that first fateful follow up appointment. My original regular mammogram where this was picked up was back in November, 3 months ago. It has seemed like a lifetime and so many appointments to wait to meet the surgeon and plan treatment. Finally, I was booked to have lumpectomy and sentinel node followed by radiation. I would have been having that op tomorrow, 1st March, after 6 weeks of sleepness nights, manic activity and tears. I have had 12 appointments; pre-eadmission check up, met anaesthetist, right now I would have been on my way to hospital to have a radioactive injection for the sentinel node. I was as psychologically prepared as I could be. They had said it could be done quite neatly and I wouldn't notice much difference afterwards. I wasn't looking forward to it, but had come to terms with the need for surgery.

But............... I had preoperative planning MRI last week, and Monday morning (yesterday) I was given the bad news. The area of DCIS is actually up to 90mm (very large) so my surgery is off, I am back on the waiting list to go to a Brisbane hospital, it has gone from a lumpectomy to a mastectomy. No Choice, lumpectomy is no longer possible. I am siting by the phone waiting for a call to tell me when I can get first appointment to see new surgeons in Brisbane. I'm back in shock again like I was after the first diagnosis, the original surgery plan was hard enough to accept but this is just horrific. I've had regular mammograms since i was 40, but apparently I have occult cells that can't be seen on mammography or ultrasound so it hasn't been picked up. 2 specialists have examined me since diagnosis and there is no lump, discharge, dimpling, my breasts are symmetrical. No clue at all except these 2 tiny areas that looked like grains of sand on my mammogram. And the whole quadrant of my breast is full of this . I am planning for immediate reconstruction and I'm really scared. This seems such an extreme treatment for a stage 0 condition, and of course I wont know what other treatment I need till it is removed so I'll be waiting again for a treatment plan. From what I am reading, the initial surgery is only the beginning. The waiting is so hard, I'm scared this has been growing while I've waited all this time for treatment anxiety is kicking in again.
I'm fully aware this could be a lot worse, and I keep reminding myself of all the positives, but I'm still devastated. Thanks for reading I don't have much more to say at the moment.
Cheers
Vicki

14 Replies

Vallerina
Member
9 years ago
Thanks everyone. I am feeling a lot calmer today, and almost looking forward to the appointment on Monday. The breast surgeon has a fabulous cv and looks very knowledgable and it will be good to get his opinion and get a treatment plan started. But apparently I will have to wait again to meet plastic surgeon, hopefully it wont be too long. Yes there are quite a few silver linings here, its crap but here are quite a few reasons to be thankful too. Im going to try to focus on them. Thanks again xx Vicki
Brenda5
Member
9 years ago
Hey possibility of no chemo or radiation after mastectomy could be a little bit of a silver lining. Hugz<3
socoda
Member
9 years ago
Hi Vicki, Devastating to have to get your head around a different surgery than initially planned. The good thing however is that this has been picked up prior to surgery rather than after it and while it is like a form of mental torture you will come to terms with this change, it is doable. I was initially told I was 100% having chemo, aggressive tumor, possibly radiotherapy. I did have a mastectomy with immediate reconstruction using implant, pathology came back completely different than was expected. No chemo, no radiotherapy, tamoxifen. I felt that I was being setup for a recurrence, but I wasn't. It was explained treatments would do far more damage to me at this stage than just being monitored and I now am completely greatful to my excellent team for giving me the best treatment designed for me and my needs, and my new boob is sensational. Wishing you all the very best, and if you want to ask questions I'm sure we will be able to answer them and hopefully help you calm your fears and settle your mind (at least a little bit). Xx Cath
mum2jj
Member
9 years ago
Hi Vallerina, such a shock twice over. I had a recurrence and kind of get where you are coming from. At my first diagnosis I was in no way ready for a mastectomy (who really is?). I can see you are a member of choosing breast reconstruction and have indicated you would like an immediate reconstruction. If you go to the choosing breast reconstruction page and look in the announcements there is one called photo stories and resources. If you click on that and scroll t the bottom you will see links to some information sheets. One in particular is questions to ask. You might like to take that along to your appointment or have a look through it first.
Big breath, we know it's crap and we are all here to hold your hand.
Paula xxx
Alpal
Member
9 years ago
Hi Vicky. So sorry that you've had this 2nd shock - it may take time to come to terms with as you just go through the motions at the moment of what's to be done.
If you'd like more information about breast reconstruction options, there is a group on here called Choosing Breast Reconstruction. You will also find a lot of info on the Reclaim Your Curves website - and they also have a Peer Support volunteer in Brisbane that you can contact if that helps.
It really helps to be as informed as you can be, but I also know how it feels to be in this crazy, messy head-space time.
Sending lots of love to you xx
Share
Member
9 years ago
Hi Vicki, the most normal thing with a bc diagnosis is that things are no longer "normal", Your parameters, outlook on life, plans you had made have been upturned. That alone is so confronting and frightening.

This whole disease changes you immeasurably. However, you are still the lap swimmer and rock singer, mother & grandmother in waiting.

So, with your initial shock you had made alternative plans for a lumpectomy and now that has taken a totally different tangent. Meanwhile, being on a waiting list conjurs up all sorts of crazy thoughts & brings about it's own stresses.

Yes, it is easier said than done but try & not focus on the fact that your anxiety is rising and the fear that it is "growing" whilst nothing is happening. This in itself is one of the hardest parts.

Finally, welcome to the online forum - a site of like-minded people who have experienced your fears, frustrations and anxiety. We totally understand where you are coming from.

Best wishes to you.

Sheryl xx
misty-n-me
Member
9 years ago
Hi Vicki. I resonated with your fear. I remember my first appointment with my surgeon, at how devastated I felt that I had to have a mastectomy rather than a lumpectomy. I only had a three week wait, from diagnosis to surgery. It all happened so quickly! I wanted to have some proof that I had a beautiful left breast so a girlfriend who dabbled in photography took some beautiful photos for me, and another friend, an artist, offered to make a plaster cast of my breasts. I am so glad that I have those keepsakes. It took me quite a while to come to terms with my chest wall...it's a journey that is different for each of us. You will reach a point of acceptance when you are ready...it's ok to grieve. That was nearly five years ago. I was recently diagnosed with a completely different type of BC in my right breast. They suggested a lumpectomy so they could get the pathology (FN biopsy was inconclusive) but I asked for a mastectomy straight up. My attitude this time around was completely different to the first. I wanted it gone, I didn't want the risk. The surgical team seemed to breathe a sigh of relief...and it turned out to be worse than they initially thought so the mastectomy was the best thing I could have done. I will be thinking of you as you begin your journey. It is what it is. Acceptance sometimes seems impossible when you're just starting, but it will come and life will be somewhat easier then.
Zoffiel
Member
9 years ago
Oh crap, Vicki. There is such a lot to learn so don't beat yourself up if you don't have the language down pat and a total understanding of the system in the next couple of weeks. BC is a long haul, regardless of what stage your disease is once you realize your world has turned upside down.
The wait for things to start happening may seem interminable, but juggling theatre lists, getting the right specialists all lined up and, most importantly, making sure you have the basic information needed for you to make informed consent can take time. You only get one crack at some things and it's so in your best interests for everyone concerned to dot I's and cross T's. Even though you will find there have been things that are overlooked or stuff that hasn't been done in what feels to you like a wretched lifetime of staring at the phone, there is a process to be followed and as @Afraser says, 'It is what it is.'
Good luck. Marg
primek
Member
9 years ago
Just keep saying "it's stage 0" all will be well. Glad your appointment is not far ahead. Tead about reconstruction options as it really helps to understand about the choices before the appointment. Best of luck. Kath x
Vallerina
Member
9 years ago
Thanks ladies. The hospital has rung and I have an appointment next Monday so Im going to keep myself busy till then, and educate myself more. It seems a long time to wait considering how long this has already been going on, but in terms of a totally new referral, it is probably quite fast and Im grateful for that. And for your encouragement.
Thank you.