Second time around
Christine_66
Member Posts: 9 ✭
Hello....
I was diagnosed with DCIS Invasive grade 2 breast cancer in my left breast in Nov 2009 when I was 43yo after been sent for a mammogram because I had never had one before. I had a lumpectomy and a sentinel nobe biopsy. A dot of inconvenience was found in one of the lymph nodes which led to a second surgery and an ancillary clearance removing a further 24 lymph nodes. This surgery had an ‘all clear’ result but I needed 4 rounds of chemo as a precaution and then 6 weeks of radiation. I then took Tamoxifen for 5 years as the cancer was hormone receptor positive.
I was diagnosed with DCIS Invasive grade 2 breast cancer in my left breast in Nov 2009 when I was 43yo after been sent for a mammogram because I had never had one before. I had a lumpectomy and a sentinel nobe biopsy. A dot of inconvenience was found in one of the lymph nodes which led to a second surgery and an ancillary clearance removing a further 24 lymph nodes. This surgery had an ‘all clear’ result but I needed 4 rounds of chemo as a precaution and then 6 weeks of radiation. I then took Tamoxifen for 5 years as the cancer was hormone receptor positive.
I have continued with my annual mammograms and ultrasound, have needed a couple of fine needle biopsies but generally had a pretty good run the past 11 years.
Until Nov 2020 😢 my routine checkup resulted in a vacuum assisted core biopsy of my right breast and the diagnosis DCIS. F@@k her we go again! Abnormal cells were located as they had calcified so could be seen on imaging! How lucky was I? If the cells didn’t die, would have been a whole lot different in 12 months time as My surgeon requested that I have a MRI to check for anything else. An area of 3-4cms was located which meant the surgical margins were increased to get a ‘clear result’.
I am now going through the motions of deciding what to do next? Can opt to just do radiation again and then roll the dice a third time and see what the future brings? But I am 99.9% decided to have a bilateral mastectomy.. I took the genetic test for BRCA 1/2 mutation...results were negative, so it’s just me 😜 I also found out from my surgeon that once you have had radiation on your breast, you can’t have it again so if it was in my left beast, I would have had it take off anyway. With radiation alone, the risk of breast cancer coming back would be 20% versus just 1% after having a mastectomy..
In my head it’s a no brainer but I am really starting to grieve about my decision and they haven’t even gone yet!
In my head it’s a no brainer but I am really starting to grieve about my decision and they haven’t even gone yet!
I have spoken to a private reconstructive plastic surgeon and I would be eligible for a ‘Tram Flap’ recon which seemed quite appealing in the start as I would be getting a tummy tuck too (had to be a silver lining there somewhere) but the length of the operation and the out of pocket cost was a lot more that I expected and I have decided not to weigh myself down with that for the moment. The breast cancer support centre ‘Choices’ advised me to just put my name down on the public waiting list, so I think that is what I will do and decide that in a couple of years... I just need to get my head around what I am going to look like on the other side of the mastectomy surgery?
I know I am stronger to cope with this having been diagnosed for a second time. The first diagnosis definitely made me stronger and more resilient in my life. I am not backward in coming forward, never hesitate to eliminate things in my life that cause me grief. That’s why I don’t feel any loyalty to my breasts as they definitely are not my BFF’s. I have breast fed 3 beautiful kids (now all adults) so I really don’t need them anymore and the thought of never wearing bras around the house is starting to feel pretty good! I am currently a DD size so I am quiet envious of my daughter coming home and the first thing she does is take her bra off!!
In all seriousness though....I just need to get my head around this choice as it’s not like going to the hairdresser and having a bad hair cut and saying ‘it will grow back’. Once they are gone, there is no coming back. But I just don’t want to roll the dice again 🤔
thanks for reading my story, any advise would be greatly appreciated ❤️
thanks for reading my story, any advise would be greatly appreciated ❤️
Christine x
Tagged:
6
Comments
-
I am So sorry to see you 'back in the club that no-one wants to join' @Christine_66 ...... bugger bugger bum & a few other choice words are in order, methinks! And a rum or two.
I like that you are feeling 'stronger' this time round and won't put up with any bullshit - having been thru the shock of it all the first time .....
I think you've already happy with the decision re having both puppies 'gone' as they are not doing you any favours right now - so it is mainly the decision on waiting for the reconstruction & having it done 'public'? Personally, I reckon that may be the way to go - no point putting yourself in big debt at this point in time (just increasing pressure on yourself.)
We have quite a few 'flat but awesome' ladies here who will jump on with their reasons why they went with that option ...... one that I would do myself, if it came to the crunch. My 3 year surgery anniversary is next week.
Have you had a Breast Care Nurse assigned to you yet? You could chat with her as well as your family - tho ultimately, only you can make the decision. xx
Take care & all the best with your decision making xx
4 -
Hey @Christine_66
I'm a two time winner of the booby prize too--first in 2006 and then in 2016.
I ditched both tits in the first shitfight and had implant recons. Not something I'd do again knowing what I know now, bt that is a different story altogether.
BCV2 I had a wide excision that excavated my armpit in a way nature had never intended, more bloody poisoning and then the rads I couldn't afford in BCV1
My advice? Get rid of the traitorous fat bubbles; you can live without them but possible wont live with them. I think our first responses are often the truest so if that was your initial reaction, go with it. Mxx9 -
Hi @Christine_66 I am sorry you are going through this again, but you seem to have a good handle on it. I totally agree with what has been said, but I thought I would chime in with a couple of things. I had a BMX, I knew I was going to lose one, but given I had the densest bloody breasts, I decided they were both going. (I also had DD size) I spoke with a psychologist about my decision just to get clarity about it - that really helped. Turned out to be a good decision as the pathology showed some ‘unusual’ cells in the ‘good’ breast which would have needed monitoring - if and when they showed up on screening 😯 I agree, it sounds like you have made a decision after considering what you have been through.
Of course I was anxious before the surgery, but when I woke up, I can honestly say I felt relief and very comfortable with my choice. I also used the BRECONDA app to help me work through my decision on whether I wanted a reconstruction.
I had expanders put in at the time of the BMX. I have health cover and my out of pocket expense for both the surgeon and the PS for the BMX and expanders (which were switched to implants 4 weeks ago) is $3000. Both of my surgeons take part in ‘Gapcover’ - I had no out of pocket for the surgeon so the $3000 was for my PS. I should add that I was not a candidate for DIEP.
As you know, you can have reconstruction at any stage in the future and as time passes, you may decide you don’t want it. It is a very individual decision. Take care Mx6 -
In 2016 I was diagnosed with Grade 3, Stage 3, multifocal, and in at least one node, Triple Positive Her 2 pos breast cancer on the left. They found (on the scans) so called "abnormal geography" in the right breast. I had chemo before surgery and when discussing my upcoming surgery, their plan was to remove the entire breast and all the nodes on the left, then take further biopsies and whatnot from the right breast. I was 57 at the time and I wanted both gone. I got the whole palaver about "unnecessary" surgery and "overkill" regarding the right breast. I was told that after doing the biopsies from the right side and removing the left, they would "closely monitor" and "carefully observe" the remaining "healthy" breast. I told my (female) surgeon that I felt as if I'd been advised that a registered sex offender lived in the house next door. I was afraid he may get into my home and assault or kill me and the police have said...."Nooo don't worry, we'll keep a close eye on him. He has strict bail conditions and has to report to his parole officer each week. He is also being fitted with an ankle bracelet, so we know he is at all times". I asked her if she and any daughters she may have would be happy with that? No??? Well me too. I want this breast gone...I feel threatened by it, and I don't care how carefully you watch it...it needs to go....like the pervert". She saw my thought process and agreed. The post surgery pathology showed a 100% response to the chemo on the left breast and nodes, and abnormal cells in the right breast, which have a very strong history of "going bad". The sentinel node on that side was negative. I'm still flat (and I think a tad fabulous) and will remain that way. I have other serious health conditions which did not allow for radiotherapy in the beginning, or reconstruction then or ever. From an 18DD to flat took some getting used to, but now I can turn around suddenly in Woolies without the risk of my boobs knocking over the person next to me. One regret...I have nowhere to keep my crotchet hook.9
-
Sending best wishes to you
6 -
Hi @Christine_66
Thinking of you.2 -
Hi @Christine_66,
I'm sorry you are facing this again. These are confronting choices. I'm wondering about the delay between your surgery (with clear margins, thankfully) and either radiotherapy or mastectomy. I don't want to add to your anxiety, it's just that when I had surgery with clear margins there was concern about the delay between surgery and commencement of radiotherapy or chemo. I was told they had to commence one or the other within twelve weeks, ideally. Mine was invasive stage 2, not DCIS. Maybe the issue is not applicable to DCIS. All the best, Lx2 -
Hi Dory65,
thankyou for your reply.As I don’t need Chemo this time round my surgeon has told me there is no rush for my decision... can take up to 3 months. I will be going back to see her next Thursday 14th Jan to discuss my treatment options. I will be asking her what I would like to do but if surgery is recommended to be earlier than the end of March, I will go ahead with her recommendations.I have been on a medically monitored weight loss program since the start of March 2020 and I really want to finish my 12 month program so that I can lose my last few kilos and go into this surgery feeling really healthy!! I have lost 23 kgs already and who knows the mastectomy may help me to lose the last couple of kilos to get to my goal! 🤞🏼🤞🏼Christine x7 -
That sounds like a good plan. Great work on the weight loss @Christine_66. Impressive. It's bizarre, but despite improving my diet and exercising more, I simply cannot seem to shift my weight! I realise I may have lost a bit of fat and gained a bit of muscle, but the stubborn lack of movement on the scales frustrating.
2 -
Ha @allyJay I also went from an 18 DD top with a 12 waist and a 14 arse --those were the days-- to a situation where I could buy a shirt off the rack that was not SM (small marquee) and actually button it up.
A fit of midnight senses saw me enter a local radio competition to win $2k to pay off my credit card. My application? I needed the money to replace my melon managing lingerie with apple enhancing versions. The money came in very handy and my exes horror that I would share such a story was icing on the cake.
Sometimes you have to see the humour in this stuff, black as it is. Mxx10 -
1
-
Hi @Christine_66 . I was adamant I was only going 'under the knife' once, so took a whole ten seconds to decide on a double mastectomy without reconstruction (after being diagnosed with early Her-2 positive last year). The surgeon considered it over the top, but my decision was found sound when a tumour was found in the tissue of the other breast post-surgery.
I now have a very tidy thin pink line across my chest. I'm happy.Some people have called me brave, but it isn't that. It's simply the only course of action that made sense to me.Good luck with whatever you decide!
4 -
Only you know what you can live with - inconvenient, but true. So, the question is, are you always going to be anxious about what's going on in the remaining breast or are you going to be able to put it to the back of your mind? I wouldn't worry too much about the recon as that can be done at the time or later if you want it (although obviously another surgery) so maybe keep that thought process separate. Whatever your decision is, it has to sit right with you so that you are satisfied that you have done the right thing, now and 10 years down the track.2
