Hi There,I'm posting my story on here as I am feeling lost - my family and friends are really supportive but I just don't feel understood.In 2015 I was diagnosed with low grade DCIS - my treatment was mastectomy, SNB with reconstruction in February 2016, followed by a prophylactic mastectomy of my remaining breast in November the same year. Based on my pathology and treatment, recurrence was a low risk. However last month, when I had my annual appointment I had a FNA on a lump which I was told last year was a cyst. Pathology suggested malignant cells so I was rushed in for scans - fortunately, there were no metastisis but I had surgery to further excise the tumors and another SNB. 3 days after my surgery I was readmitted for a second operation as there were 2 tumors identified (8 and 5 mm respectively). The second operation removed all of my skin (first mastectomy was skin sparing) and revealed a 3rd tumor, 4mm.Pathology was ER/PR+, Her-, micro mets to one lymph node. I will undergo radiotherapy but no chemo. I also found out yesterday that my bone scan revealed a benign hyperostosis on my skull and my surgeon has told me she isn't worried but wants a CT scan in a few months to check. After 3 weeks of scans, testing and surguries, and the additional worry now that the benign hyperostosis is actually a metastasis I am just at a low - for a disease that I thought I had treated 3 years ago I'm now left wondering (obsessing) about another recurrence. I just feel like I'm being denied a life but really I should be out there enjoying every minute of it. I have 2 gorgeous boys and a wonderful husband and it is so hard to see them deal with the events of the past 3 weeks. My surgeon has said that she hasn't seen a case like mine before so I feel quite isolated and scared. I've always been so healthy and now I feel like this will never end.

Dear @Mandermartini The thought of recurrence is what we all dread. Even if you manage to push it out of day to day thinking, the worry of recurrence lurks. When you were first diagnosed, you were probably advised to take things one step at a time. That’s still good advice. Your surgeon isn’t alarmed and that’s a good sign. We all know the ‘oh but.......’ thoughts that come, even when you really trust your medical team. But if worry cured all, none of us would be on this site. Unfortunately you have to take an emotional step back, regroup and then step toward again. It’s an utter pain, but fingers crossed all will be well. Best wishes.

Hi @Mandermartini I had a recurrence after 10 years--I can't say I was overly surprised, but I was monstrously disappointed and distressed. It's really hard when you have done everything that was recommended--and a bit more. I had a very large tumour in my armpit, that I'd had tested multiple times but which was only recognised for what it was once it started coming through my skin. I've got invasive lobular which is really hard to identify until it's got a fair gallop on. It's a horrible disease. That was three years ago and after surgery (wide excision that revealed the sneaky shitting thing was in 5 nodes) chemo (again) rads and now AI, I'm sort of getting my head around it. My excellent GP has bluntly stated that we are probably just buying time with the AIs, which is challenging, but it's encourages me to keep swallowing the bloody pills, even when I'm so over the side effects. You've just got to do the best you can. I've stopped freaking out at every new ache and pain and am trying to get back to 'normal' but it's never far from my mind. The key is to push it back so it's not the only thing you think about. Easier said than done. Keeping looking forward and try not to let this define you. Which really, really is easier said than done--there are quite a few of us here who know that. MXX

Very scary but well done on catching it early for the second time. It concerns me that after already being treated for breast cancer you were told a lump was a cyst, presumably without any biopsy testing? It again proves that we need to be our own advocates and press for tests and scans on everything. I wish you a speedy recovery x

@sillysam83 had a recurrence after her first surgery and had to go on and had further surgeries. @mum2jj also had a recurrence. Both well since but I'm sure they could share their wisdom. I totally get the fear. Whilst I haven't had a local recurrence, I have had lots of health issues that I was terrified was metastases but sll turned out not to be.They certainly don't give stats but i guess with all of if us there would have to be tiny breast cells still left behind which of course can still mutate.I'm hoping for you this time it's successful and you start to feel happiness in your life again.

@Mandermartini What a rough time you have had. After all you have been through surgery/treatment wise, I can only imagine how devastated & scared you were to hear the cancer had returned.Its something we all dread & no matter how many stats, percentages & studies we read about, it is a game of chance & we all play the odds! You have been dealt a bad hand but try to focus on what you do know & try not to think ahead of what may happen. Easier said than done but stress will fuel cancer so you need to try to not worry about what may not even happen. Deep breaths & we are all here for you. Love & strength xx

Recurrence | Online Network

Elvena
Member
6 years ago
feeling you Dodg113
jennyss
Member
6 years ago
Dear @dodg113

and best wishes
from jennyss in Western NSW
dodg113
Member
6 years ago
HI ,so sorry to hear of your recurrence - an can relate to how you feeling.I have just been diagnosed with new breast ca in opposite breast at 5yr check up.
Had high grade dcis rx with lumpectomy and radiation ,now have grade 1 er+pr+ her2 - in opposite breast.
Am feeling so betrayed by my body and petrified of thsi happening a 3rd time.
still deciding on treatment but thinking of skin,nipple sparing mastectomy for new cancer, not sure what to do for old as more difficult as had radiation.
I also have a son doing his HSC so decided not to tell my kids till he has finished.
Have told 2 friends but sadly they have not been v supportive,my hubbie is great but doesnt really understand how scared I am feeling
mum2jj
Member
6 years ago
Hi @Mandermartini,
yes I too had a recurrence. My first diagnosis triple neg and I had a lumpectomy, chemo and rads. At the time had one positive lymph node (10mm). 18mths after that diagnosis had a recurrance in same breast, also triple neg. it was devastating. I went on and had a single mastectomy and more chemo. Later when I decided to reconstruct I had my healthy breast off (both my diagnosis were 8 mths and 6 mths after clear mammograms). It is now 10 years since first diagnosis and 8 1/2 since the recurrance. It sucks big time, but I try and take each day as it comes and as a blessing. Sending you much love and what I hope is a sense of hope too.
Hugs.
Pau,a xxx
jennyss
Member
6 years ago
Dear @Mandermartini,

from jennyss in Western NSW
iserbrown
Member
6 years ago
Excellent advice from @zoffiel - can't emphasise enough her statement "...the key is to push it back so it's not the only thing you think about. Easier said than done. Keeping looking forward and try not to let this define you. Which really, really is easier said than done.."

It's a heightened awareness we have of ourselves now that we have the badge, been there done that!

Take care and hopefully the treatment suggested will rid your body of it for good!
Zoffiel
Member
6 years ago
Hi @Mandermartini
I had a recurrence after 10 years--I can't say I was overly surprised, but I was monstrously disappointed and distressed. It's really hard when you have done everything that was recommended--and a bit more. I had a very large tumour in my armpit, that I'd had tested multiple times but which was only recognised for what it was once it started coming through my skin. I've got invasive lobular which is really hard to identify until it's got a fair gallop on. It's a horrible disease.

That was three years ago and after surgery (wide excision that revealed the sneaky shitting thing was in 5 nodes) chemo (again) rads and now AI, I'm sort of getting my head around it. My excellent GP has bluntly stated that we are probably just buying time with the AIs, which is challenging, but it's encourages me to keep swallowing the bloody pills, even when I'm so over the side effects. You've just got to do the best you can.

I've stopped freaking out at every new ache and pain and am trying to get back to 'normal' but it's never far from my mind. The key is to push it back so it's not the only thing you think about. Easier said than done. Keeping looking forward and try not to let this define you. Which really, really is easier said than done--there are quite a few of us here who know that. MXX
lrb_03
Member
6 years ago
Hi @Mandermartini. Sorry you're going through all this... again.

I, too, have been diagnosed with hyperostosis, on a bone scan that was otherwise normal. I will admit to having been concerned, like you. Over the couple of years since, I have come to the conclusion that it's something that is going to show up more as imaging methods improve, but that at this stage, noone really knows what the significance is.

I am a nurse, and it's still taken every bit of those couple of years for it to sit semi comfortably with me.

Thinking of you
Take care
Di1965
Member
6 years ago
Mandermartini. Gee you poor darling. I am sending you love and hugs. Try and get some counseling i always feel better after talking with professionals. We are all here for you too. You need lots of TLC. So look after you. :)
Michele_B
Member
6 years ago
@Mandermartini, thinking of you, and wishing you the very best going ahead. Im currently waiting results from my annual checkup. No matter how positve we are, the niggle that it might not be great news, is always there.
As others have said, try to make ypurself busy enjoying t8me with your family. We are all lucky to have med8cal teams that will be doing their very best for us.
Love and hugs to you xxx