Metastasis

[pinkwarrior76]

Hi Marie,

I'm sorry to hear that your sister has had such a hard battle. I’m so glad that she hasn’t had any metastasis.  I too am having some fertility issues, my husband and I were actively trying when I found out the news and I suffered a terrible miscarriage a few months prior to my diagnosis. This year has been one for the books.

My sister has been a great support system for me and is planning on being a surrogate for me as I can’t try again for 5 years due to tamoxifen. 💗 it is so important to have supportive friends and family and I’m sure you mean the world to her as my sister does to me.

love, Dana

[pinkwarrior76]

Hi Nikki,

thank you so much for the reassurance. I’m glad that you are doing well!! Best of luck to you 💕

[Mindy63]

My sister had breast cancer 21 years ago. Diagnosed when she was 33. 4 nodes had cancer in them. She has gone on to have further DCIS And a new primary, 2 mastectomies and 2 lots of chemo BUT She has not had any metastases. She also went on to have another daughter several years after her first round of chemo. She is happy and healthy. I hope that gives you a real boost of hope.

[Nikki49]

Hi pink warrior,

Great name by the way wish I’d been more creative when I first joined, way back in the summer of 2013!!

i had triple negative cancer with macromets in one lymph node.  I had mastectomy, axillary clearance and 6 rounds of Fec-t

I didn’t have any scans after treatment finished.

i still have annual mammograms on my remaining breast.

The first few years every ache & pain I thought it’s back.  I longed for the days that I could wake in the morning with an ache and my first thought would be ‘i must have slept funny’.  I can say that at last I am back to that place. 😊

I do also have the 2 week rule that someone else mentioned, whereby I contact the gp if ive still got symptoms (Of anything) after 2 weeks.

i don’t feel the need to come here anymore for myself but I do pop in a few times a year to help those just starting this hell of a rollercoaster ride.

take care and best of luck x

[Kip]

Hi,  no I had no scans after treatment ended. I have a 6 monthly appt with oncology nurse which is more for a chat and chance to voice concerns.  I am also participating in Add Aspirin trial so I get some bloods done 6 monthly which gives me a little more reassurance.  As Mai said the use of unrequired scans can be bad too.  Some days I wish I had a scanner at home I could walk through every morning.  But as time goes on it does get easier.  Mai's 2 week rule is a great idea. 

[Mai7]

Hi Pinkwarrior, I understand how you feel, the reassurance keeps you going maybe a few days then you need a boost again.  It can be a bit of a challenge but the important thing is never stop trying to push past the bad thoughts towards the good thoughts.  Cancer has taken enough already so don’t let it steal your joy. 💖

[pinkwarrior76]

Hi Mai,

I am so glad to hear that you are doing well! It gives me some reassurance to hear stories of it not moving past lymph nodes. I feel like I need constant reassurance to be honest!

That is true about the scans. I can see that there would be positives and negatives to it. I am getting better with time with my anxiety..it’s definitely challenging. 

[Mai7]

Hi Pink warrior,  glad to hear you’re now NED.  I had stage 3 ER+/PR+ HER2- breast cancer in 2017 with 9/12 lymph nodes having cancer in them.  That was in 2017 and I’m still here and doing well with no signs of recurrence.  It’s really hard at first to regain trust in your body as it’s let you down.  I felt the same, like I wanted scans to know what’s going on in there.  Scans have their own collateral damage and exposure to them isn’t good either.  That’s why they usually wait for symptoms to avoid overexposure.  I had a bone scan as part of a clinical trial (non-standard for patient aftercare) and my bones were clear even after locally advanced bc!

Anxiety levels can be quite high for the first 2 years after treatment as you’re almost waiting for it to return.  I mean why not, it was a surprise in the first place.  I had a 2 week rule to observe any minor concerns before considering visiting my GP and that really helped.  Of course, act sooner if it feels more urgent.  I know nothing I say will totally convince you as it’s easy to say these things once you’re further down the road but maybe try the 2 week rule and slowly grow in confidence.  

[pinkwarrior76]

Hi Kip,

Thank you so much for your reply and words of advice. I am curious if they did any scans on you-PET, bone,etc?  My oncologist says that I don’t need to do that unless i have symptoms of metastasis and that it causes unnecessary anxiety.

i am scared to death to have one done but I feel like I’ll continue to have anxiety unless I know I’m clear. I was curious what other clinics do as protocol.

[Kip]

Hi PinkWarrier76,

Just had to reply to you.  I was diagnosed with the same as you back in 2018.  I had a mastectomy and they found small amounts in 3 lymph nodes. I underwent chemo, radio etc and have just had a clear 2nd year mammogram so I fully understand the fear you have, it still hits me from time to time and from reading other ladies experiences its very common to panic when anything hurts.  You are still very early on in the whole process and I can assure you that with time the fear and panic does subside and doesn't become the all encompassing thought.  I still panic and always will but we have to believe in the experts and trust that they are looking after us.   I'm sure others will be along shortly to give you more positive stories.  I always take comfort from others dropping in to let me know they are ok.  And as they always tell me... remember that there are many many many other women who were once on this site who are living normal healthy lives and no longer feel the need to be on this forum, quite often its only those in a panic or in need of advice who post.  The other good piece of advice I was given after treatment ended... "Thoughts are NOT facts, they are just thoughts"...  

Big hug.

Kip

x

[pinkwarrior76]

Hi everyone,

I was diagnosed in feb at 28 years old with estrogen positive IDC. During my mastectomy, they found that it had spread to one lymph node (out of 17 tested). 

I worry constantly about it spreading further to my bones, etc and think every ache and pain could be bad news. I am driving myself crazy. My oncologist is confident that my chemo and radiation will prevent it from recurring and that it is gone now.

 Does anyone have any stories about lymph node positive cancer survivors to make me feel less anxious? Or words of advice in dealing with my anxiety?