Forum Discussion
Newly Diagnosed Locally Advanced Breast Cancer
Hello Everyone
I recently got diagnosed with what they thought was DCIS but after all the ultrasounds, MRI, CT, PET scan, and biopsies, the diagnosed me with stage 3, Locally Advanced Breast Cancer. I am 37 years old (hopefully reach level 38 in January), and in June 2023, I found a lump in my left armpit. Not very big. About the size of a grain of rice. I didn't think much of it until a month later, I found a lump under the areola of my left breast. I had found those kind of lumps before in my right breast and got them checked straight away but they all came back as benign cysts. But I did the right thing and went to my GP. Rather than telling her about the breast lump, I mentioned about the lump in my armpit instead. She had a feel and thought it was just a gland until she asked if I had found one in the breast as well. I said yes. Straight away she gave me referrals for a mammogram and ultrasound. But I was so convinced that it would just say it was a benign cyst again, that I put the referrals up on the fridge and left them there....until November. By the beginning of November, the lump in my armpit was big. But the one in my breast didn't feel like it had grown. But I went and got the mammogram and ultrasound done and a few days later my doctor called me back in. I still remember, very clearly, my doctor starting to cry and apologising to me. I should say, my doctor is a strong woman and I have never seen anything phase her but she was crying and I knew straight away the results. Fast forward to now and I am currently waiting to meet my surgeon and oncologist. I'm not expecting to see them until the new year, despite being a priority 1 with the hospital.
My official diagnosis is Stage 3, locally advanced Invasive Ductal Carcinoma. It is ER+, PR- and HER2- (as far as im aware unless i read it wrong). The weird thing is, every female on my mother's side that has had breast cancer (my nanna/mum's mum, nanna's 2 sisters, my aunt/mum's sister) have all had it in their left breast but none of them have had it spread to the left armpit lymph nodes like i have. They were all stage 2. I'm currently trying to get my mum to go and see the doctor because when I got my diagnosis, my stepdad quietly told me that mum hasn't had a mammogram done in 16 years and 18 months ago she noticed the nipple in the left breast has become inverted.
Sorry for the long introduction to my story. I still haven't fully acknowledged what is happening. I hear everything they say and I have read all the reports, looked at the imaging. But I feel like I am numb right now. Nothing is fully registering and I have had some people ask me why its taking me so long to feel something. I honestly don't know.
I recently got diagnosed with what they thought was DCIS but after all the ultrasounds, MRI, CT, PET scan, and biopsies, the diagnosed me with stage 3, Locally Advanced Breast Cancer. I am 37 years old (hopefully reach level 38 in January), and in June 2023, I found a lump in my left armpit. Not very big. About the size of a grain of rice. I didn't think much of it until a month later, I found a lump under the areola of my left breast. I had found those kind of lumps before in my right breast and got them checked straight away but they all came back as benign cysts. But I did the right thing and went to my GP. Rather than telling her about the breast lump, I mentioned about the lump in my armpit instead. She had a feel and thought it was just a gland until she asked if I had found one in the breast as well. I said yes. Straight away she gave me referrals for a mammogram and ultrasound. But I was so convinced that it would just say it was a benign cyst again, that I put the referrals up on the fridge and left them there....until November. By the beginning of November, the lump in my armpit was big. But the one in my breast didn't feel like it had grown. But I went and got the mammogram and ultrasound done and a few days later my doctor called me back in. I still remember, very clearly, my doctor starting to cry and apologising to me. I should say, my doctor is a strong woman and I have never seen anything phase her but she was crying and I knew straight away the results. Fast forward to now and I am currently waiting to meet my surgeon and oncologist. I'm not expecting to see them until the new year, despite being a priority 1 with the hospital.
My official diagnosis is Stage 3, locally advanced Invasive Ductal Carcinoma. It is ER+, PR- and HER2- (as far as im aware unless i read it wrong). The weird thing is, every female on my mother's side that has had breast cancer (my nanna/mum's mum, nanna's 2 sisters, my aunt/mum's sister) have all had it in their left breast but none of them have had it spread to the left armpit lymph nodes like i have. They were all stage 2. I'm currently trying to get my mum to go and see the doctor because when I got my diagnosis, my stepdad quietly told me that mum hasn't had a mammogram done in 16 years and 18 months ago she noticed the nipple in the left breast has become inverted.
Sorry for the long introduction to my story. I still haven't fully acknowledged what is happening. I hear everything they say and I have read all the reports, looked at the imaging. But I feel like I am numb right now. Nothing is fully registering and I have had some people ask me why its taking me so long to feel something. I honestly don't know.
33 Replies
- I have another update for you all
On the 6th February, I had to go to the hospital for my pre-admissions check with the nurse and the anesthetist which went well. They are going to put in nerve blockers which will last about 12 to 24 hours after surgery. They are just unsure as the whether i will have oral pain medication or the self administered injection. The last time i had one of those self administered ones, I ended up with migraines and they are worried about that again. I will know more once I come out of surgery. BUT, on the way home from the hospital I got a call from my breast care nursing team and she asked me if they pre-admissions nurse had given me a surgery date. I said no but I already knew the date, which was the 27th February. She then told me that my surgery had been changed to the 13th February. So 5 days from now, I will be in surgery. Don't' know why it got changed and I'm definitely not complaining. Just have a lot of things to organize before then. - @kirstiekoala welcome to our exclusive club! I had a bilateral mastectomy on the 17th Jan with a DIEP flap reconstruction. I had my first BC in 2007, had lumpectomy, radiotherapy and AIs for 8/yrs. Last year I was diagnosed with another BC in the same breast. Initially I had a lumpectomy but eventually decided to have the mastectomy. I have a family history and I don’t want to be going through this again in 10 yrs! I had 4 nights in hospital and have been slowly mobilising at home. My surgeon directed my to be very careful about moving my arms, shoulders etc to ensure the grafts take - I guess implants are similar in that way. On the BCNA there’s a great resource about preparing for reconstruction that I’ve found very useful. Also the info on Reclaim your Curves website. Wishing you well with your surgery. I found once I’d made the decision and it was all booked I became much calmer. But take it one step at a time.
- That's terrific that both your Mums are helping you @kirstiekoala xx.
Yep, don't even CONSIDER getting stuff out of low or high cupboards, either or picking up pets & young kids - it uses all the muscles that may be affected wth your surgery & you sure don't want any setbacks xx
I can recommend iView & Netflix for binge watching!! ;)
take care - Im thankful that my husband can work from home and his mum is coming over from Qld to help out for 2 weeks plus my mum put in her long service leave so lots and lots of help. Not allowed to lift anything more than 2kg for the 6 weeks so definitely no housework. If im up to it, i will be cross stitching or doing diamond painting but otherwise sleeping and binge watching tv
- Wishing you a belated happy birthday @kirstiekoala. xxx. I hope you WERE able to celebrate it appropriately xx
Oh dear - that's a shocker about the lost file and definitely needs to be investigated! :( It happened to me between my surgery & my Rads .... it was SO upsetting!
I am glad that you & your surgeon agree on the game plan and that she can see that the end in sight within the year!! Woohoo - more celebrations then xx
Try & keep busy in the meantime, doing stuff you love doing - or even being constructive for the next 2-3 months as you recover from your surgery. Maybe even start freezing some precooked meals so that you have stuff you 'like' at hand for when you are home again.
Do you have family living with you that can support you in the bed rest period? As you'll probably not be able to use your arms for a little while, either, lifting stuff etc - and DEFINITELY no house cleaning!!! Delegate that to someone else! ;)
take care xx - Hey everyone. Update for you
The clinic lost my file somehow and took almost 2 months from when the referral to the surgeon was sent and when i actually saw her. She apologised and was excellent. Didnt make excuses and said she was making sure it was being investigated as to how a file went missing. Even she said, i should have been seen weeks ago. My appointment to see her was on the 23rd January, which was also my 38th birthday, lol.
I was fully prepared to fight her on what i wanted, which was a double mastectomy with implants. She then said to me "because of the tumours, where they are, how big they are, etc, i have no other option but to do a mastectomy on your left breast"....my response "can you do both" and she agreed with implants. Sadly the nipple and areola cant be spared in the left so she is gonna take the right as well so they look identical. I am booked in for the surgery and she is going to do the implants at the same time as well as a lymph node clearance on the 27th February. The surgery is 4 hours. I will be in hospital for 5 days and then bed rest for 6 weeks. Ive had a few people who have had mastectomies, question why the long bed rest but then i realised they didnt get the implants. The 6 weeks is to make sure everything settles and my body doesnt reject the implants or i get an infection. Precationary measure on behalf of my surgeon.
2 - 3 months after the surgery i will do chemo then radiation but my surgery said by my 39th birthday i should be in remission, barring any complications. Finally my path is laid out and i know whats coming. Woot woot!!! - Hi @kristiekoala. I was diagnosed with high grade DCIS (Ductal Carcinoma in Situ) in my left breast back in April 23 and had a skin sparing double mastectomy (ie: they couldn't keep the nipple/aerola which is otherwise called Nipple sparing) and lymph nodes removed. My pathology was ER+ and PR+. This type of diagnosis was non-invasive cancer as hadn't spread to the lymph nodes but they were removed as part of the process to check in having the double mastectomy. I went privately for the surgery through Pindara Hospital on the Gold Coast and there was a 1 week time frame between diagnosis, consulting with a surgeon and then the actual surgery and 4 day hospital stay. I didn't need chemo etc. I took very evasive action in having the double mastectomy. This is what was ultimately recommended and was the best result due to the high grade, close margins to the nipple and the possibility of re-occurrence in the right breast. I have no regrets. Whilst not a specialist Im not sure why you have only been recommended a lumpectomy. Maybe it is the public system. I had tissue expanders inserted at the time of mastectomy and then reconstruction 5 months later with silicon implants but haven't had any further cosmetic nipple reconstruction surgery or nipple/aereola tattoos. In my case I see that it came down to a "trade off" in having the major surgery as a means for a better future prognosis. I feel for you as there are so many questions and decisions and it is very much a case that you only get snippets of information at a time. I wish you the best in your journey to a healthy future.
- That is good news to hear you have it under control and that there is a reasonable explanation for it. For some reason, I am always relieved if I can find a cause for a symptom...even if I still have the symptom..
- Yes, the doctor made a house call. One thing I love about Dial A Doctor is having them come to the house, especially on holidays and stuff. They are amazing. Truthfully, i have seen my husband with haematoma's before and he has never mentioned having pain and considering the size of it, I didnt even consider that it could be that. But the doctor checked that it wasnt an infection, and thankfully no. But I have developed an abcess, in a very uncomfortable spot on the body. I cant catch a break right now lol. Right now, all i can do is laugh because, as they say, it doesnt rain, it pours
- Well done @kirstiekoala for getting onto the Dr .... did he make a house call??? WOW!
HOpefully the haematoma will break down on its own, with the heat pack & maybe soft massage? I am so glad the pain/discomfort has reduced & hope it doesn't happen again!
take care, enjoy the rest of the Festive Season xx
