Stage 3 Invasive Lobular Cancer diagnosis
Hi everyone, this is my first time on here and I've been reading everyone's stories and comments. What an amazing bunch of people that are here. Having read so many stories has encouraged me to post...
Forum Discussion
Hi @KezzaG - thanks for tagging me @kmakm - I'm sorry it's taken me so long to respond!
I also had regular mammograms and ultrasounds and even when I noticed a change in my left breast (described as 'architectural distortion'), the mammogram, ultrasound and MRI all gave me the all clear, putting it down to 'scar tissue' from the breast reduction that I had more than 30 years ago. It was only when my left nipple inverted several months later and I went back to have it checked again that the changes finally showed up on the scans - though NEVER on MRI - and I was booked in for biopsy. It was only due to an incredibly astute radiographer, who noticed 'something suspicious' on my right breast when I went for that last ultrasound, that my right breast was biopsied also. At that point, there was never any question that there was something going on in the left side but I never had any visible changes to my right breast. Nothing ever showed up on any other scan on my right side and even at the biopsy it was incredibly difficulty for the radiographer to find the suspicious area on the right.
The biopsies diagnosed bilateral invasive lobular carcinoma - no lymph node involvement. I was told then, that it was probably breast cancer all along, even when it was put down to scar tissue. With lobular found in both sides I was booked in for a double mastectomy from the start. For me, this was not an issue. I always really loved my boobs but by that stage my left side looked so weird that I was only too happy for it be lopped off - and I just wanted the cancer gone from my body. All the staging scans that I had, indicated that my cancer hadn't metastasised. That was the biggest relief for me, especially knowing that I'd probably had the breast cancer for well over a year. Having said that though, the diagnosis was in January and with my Drs blessing I delayed surgery until April as having it in the school holidays was a better option for me.
My surgeon told me that during the operation, he would do a sentinel node biopsy on both sides and if there was any sign of cancer in even one sentinal node, he would do a full axillary clearance on that side. As it turned out, I ended up with a full clearance on my left side.
Given that if there was node involvement discovered during surgery and therefore there was always a possibility that I would need radiation, my plastic surgeon was not keen to do an immediate reconstruction at the time of mastectomy. Radiation plays a huge role in the success of reconstruction. I was therefore given air expanders during surgery, and will have a reconstruction sometime during 2019.
It really is the biggest shock when you're told that your cancer is a particular size, only to find out that it's much bigger. The 16.8 cms of tumour in my right breast was a huge surprise to everyone - even my breast surgeon - and that was in the breast that hadn't shown any sign of cancer. All I could imaging was a 30cm ruler and thinking - wow, that's more than half a ruler!
Fast forward to October - I've now finished AC-T chemo and have started radiation. Even though my body was officially cancer free after surgery, with a few nodes coming up positive, my cancer was also stage 3. There is discussion over whether chemo actually has any effect on lobular cancer, but my medical oncologist recommended it and really, all I want to do is to throw absolutely everything at this disease to minimise a recurrence (no guarantees, I know).
You didn't mention which chemo you're doing? I'm guessing it's 4 x AC (either two or three weeks apart) and then 12 x weekly taxol? I did have a range of side effects - from a chronic dry mouth, nose bleeds, fatigue etc but I was incredibly fortunate throughout chemo and was able to function normally and didn't need to take any time off work. You'll find a ton of different chemo experiences on this forum and each and every one of them is 100% normal so it's really important to know that whatever you experience is absolutely OK. If you find that you need to stay in bed for a few days then listen to your body and do just that. Eat and drink what you crave, rest when you need to, exercise if you can - just do whatever gets you through. It's such an individual journey for everyone and never feel the pressure to be 'amazing'. Whatever you can do is fine, and if you're feeling crappy, that's fine too. You have to give yourself permission to feel crap sometimes :)
It was really confronting for me to lose my hair - and then my eyelashes and most of my eyebrows - but they will all grow back. Actually, my head is already starting to grow 'peach fuzz' just three weeks after my last chemo. I choose to wear a wig because that's what gives me self confidence, and there are many people at work who don't even know I had cancer.
I'm 2 days into my 6 weeks of radiation and so far, it's absolutely fine although I know it's very very early days. My cancer was really close to the skin margin so my radiation oncologist has said that she 'wants to see a skin reaction' - Yay! (LOL).
My cancer was 100% ER and PR positive so I'll be on years of hormone therapy after radiation. If it truly further reduces my chances of a recurrence I'll do whatever I need to.
Emotions are like a roller coaster. I'm a really pragmatic person so from the outset I've been like 'OK this is what's happened, what do I have to do' - and I guess I haven't really given myself a chance to process it all emotionally yet. I find though that it gets to me when I'm least expecting it. I'll suddenly have a weeping or teary moment for seemingly no reason at all. I consider myself one of the luckiest people on earth to have an excellent prognosis when I know that so many people don't. I feel so fortunate to have something treatable (even curable I guess), with no apparent metastasis; to have decades of medical research and tens of thousands of warrior women that have paved the way, and to live in a country where we have the highest rate of breast cancer survival in the world.
Like you, I am blessed with a wonderfully supportive family and amazing friends, and I also have an incredibly supportive employer and easy access to medical resources. I don't take ANY of that for granted because I know that there are so many men and women (many of them on this forum) who do not have that.
This forum has been the most incredible support for me. I've taken a bit of a break from being active on here for a while as I've had so much going on (and after a full day of work and coming home to make dinner etc for the fam, I've been collapsing into bed and fast asleep much earlier than I used to!) but I'm looking forward to giving back a lot more soon, as it's been so wonderful for me. There's always someone on here night and day to chat to, or if you just want to download about how you're feeling.
Wishing you only everything of the best with your treatment going forward. There is always a light at the end of the tunnel, just keep moving towards it and you'll see that step by step you'll get through.
Lots of love,
Yvette xx
I also had regular mammograms and ultrasounds and even when I noticed a change in my left breast (described as 'architectural distortion'), the mammogram, ultrasound and MRI all gave me the all clear, putting it down to 'scar tissue' from the breast reduction that I had more than 30 years ago. It was only when my left nipple inverted several months later and I went back to have it checked again that the changes finally showed up on the scans - though NEVER on MRI - and I was booked in for biopsy. It was only due to an incredibly astute radiographer, who noticed 'something suspicious' on my right breast when I went for that last ultrasound, that my right breast was biopsied also. At that point, there was never any question that there was something going on in the left side but I never had any visible changes to my right breast. Nothing ever showed up on any other scan on my right side and even at the biopsy it was incredibly difficulty for the radiographer to find the suspicious area on the right.
The biopsies diagnosed bilateral invasive lobular carcinoma - no lymph node involvement. I was told then, that it was probably breast cancer all along, even when it was put down to scar tissue. With lobular found in both sides I was booked in for a double mastectomy from the start. For me, this was not an issue. I always really loved my boobs but by that stage my left side looked so weird that I was only too happy for it be lopped off - and I just wanted the cancer gone from my body. All the staging scans that I had, indicated that my cancer hadn't metastasised. That was the biggest relief for me, especially knowing that I'd probably had the breast cancer for well over a year. Having said that though, the diagnosis was in January and with my Drs blessing I delayed surgery until April as having it in the school holidays was a better option for me.
My surgeon told me that during the operation, he would do a sentinel node biopsy on both sides and if there was any sign of cancer in even one sentinal node, he would do a full axillary clearance on that side. As it turned out, I ended up with a full clearance on my left side.
Given that if there was node involvement discovered during surgery and therefore there was always a possibility that I would need radiation, my plastic surgeon was not keen to do an immediate reconstruction at the time of mastectomy. Radiation plays a huge role in the success of reconstruction. I was therefore given air expanders during surgery, and will have a reconstruction sometime during 2019.
It really is the biggest shock when you're told that your cancer is a particular size, only to find out that it's much bigger. The 16.8 cms of tumour in my right breast was a huge surprise to everyone - even my breast surgeon - and that was in the breast that hadn't shown any sign of cancer. All I could imaging was a 30cm ruler and thinking - wow, that's more than half a ruler!
Fast forward to October - I've now finished AC-T chemo and have started radiation. Even though my body was officially cancer free after surgery, with a few nodes coming up positive, my cancer was also stage 3. There is discussion over whether chemo actually has any effect on lobular cancer, but my medical oncologist recommended it and really, all I want to do is to throw absolutely everything at this disease to minimise a recurrence (no guarantees, I know).
You didn't mention which chemo you're doing? I'm guessing it's 4 x AC (either two or three weeks apart) and then 12 x weekly taxol? I did have a range of side effects - from a chronic dry mouth, nose bleeds, fatigue etc but I was incredibly fortunate throughout chemo and was able to function normally and didn't need to take any time off work. You'll find a ton of different chemo experiences on this forum and each and every one of them is 100% normal so it's really important to know that whatever you experience is absolutely OK. If you find that you need to stay in bed for a few days then listen to your body and do just that. Eat and drink what you crave, rest when you need to, exercise if you can - just do whatever gets you through. It's such an individual journey for everyone and never feel the pressure to be 'amazing'. Whatever you can do is fine, and if you're feeling crappy, that's fine too. You have to give yourself permission to feel crap sometimes :)
It was really confronting for me to lose my hair - and then my eyelashes and most of my eyebrows - but they will all grow back. Actually, my head is already starting to grow 'peach fuzz' just three weeks after my last chemo. I choose to wear a wig because that's what gives me self confidence, and there are many people at work who don't even know I had cancer.
I'm 2 days into my 6 weeks of radiation and so far, it's absolutely fine although I know it's very very early days. My cancer was really close to the skin margin so my radiation oncologist has said that she 'wants to see a skin reaction' - Yay! (LOL).
My cancer was 100% ER and PR positive so I'll be on years of hormone therapy after radiation. If it truly further reduces my chances of a recurrence I'll do whatever I need to.
Emotions are like a roller coaster. I'm a really pragmatic person so from the outset I've been like 'OK this is what's happened, what do I have to do' - and I guess I haven't really given myself a chance to process it all emotionally yet. I find though that it gets to me when I'm least expecting it. I'll suddenly have a weeping or teary moment for seemingly no reason at all. I consider myself one of the luckiest people on earth to have an excellent prognosis when I know that so many people don't. I feel so fortunate to have something treatable (even curable I guess), with no apparent metastasis; to have decades of medical research and tens of thousands of warrior women that have paved the way, and to live in a country where we have the highest rate of breast cancer survival in the world.
Like you, I am blessed with a wonderfully supportive family and amazing friends, and I also have an incredibly supportive employer and easy access to medical resources. I don't take ANY of that for granted because I know that there are so many men and women (many of them on this forum) who do not have that.
This forum has been the most incredible support for me. I've taken a bit of a break from being active on here for a while as I've had so much going on (and after a full day of work and coming home to make dinner etc for the fam, I've been collapsing into bed and fast asleep much earlier than I used to!) but I'm looking forward to giving back a lot more soon, as it's been so wonderful for me. There's always someone on here night and day to chat to, or if you just want to download about how you're feeling.
Wishing you only everything of the best with your treatment going forward. There is always a light at the end of the tunnel, just keep moving towards it and you'll see that step by step you'll get through.
Lots of love,
Yvette xx