SELF CHECKING AFTER A DOUBLE MASTECTOMY AND LOBULAR CANCER

Mazbeth said:

Hi @roylej I am sorry you haven’t been well supported in your recovery and ongoing monitoring. I had lobular BC and I decided on a BMX with expanders which were switched to under muscles implants 6 months later. My lymph nodes were clear and my surgeon was able to get clear margins. My surgeon fully supported my decision to remove the ‘good’ breast. You will definitely need to be strong and advocate for yourself. My mass was not picked up on the mammogram, it looked suspicious in the ultrasound. A I had neoadjuvent chemo and now take an AI. I have an annual ultrasound to monitor my chest wall and lymph nodes. I definitely have achy/stiff joints from the AI. I had a bone density scan before I started the AI and I am yet to have another one to monitor my bone density - I have been on the AI for over a year. Take care 🌸

Mazbeth said:

Hi @roylej I am sorry you haven’t been well supported in your recovery and ongoing monitoring. I had lobular BC and I decided on a BMX with expanders which were switched to under muscles implants 6 months later. My lymph nodes were clear and my surgeon was able to get clear margins. My surgeon fully supported my decision to remove the ‘good’ breast. You will definitely need to be strong and advocate for yourself. My mass was not picked up on the mammogram, it looked suspicious in the ultrasound. A I had neoadjuvent chemo and now take an AI. I have an annual ultrasound to monitor my chest wall and lymph nodes. I definitely have achy/stiff joints from the AI. I had a bone density scan before I started the AI and I am yet to have another one to monitor my bone density - I have been on the AI for over a year. Take care 🌸

hi Mazbeth,
Sound similar to mine, mine wasn't picked up on a mammogram either.. but interesting you have an ultrasound as again I have not been offered this, just the self check...  thanks for your reply as I am seeing my oncologist and will be very adament that in want an ultrasound at the very least.. Did you have nipple sparing too? xxx

 



 

arpie said:

OMG @roylej  - I am so sorry to hear this - it is NOT the standard of care that any of us would expect or necessarily accept :(  

The Hormone therapy DEFINITELY gives you aches & pains - I went on to Medicinal Cannabis Oil for mine (as it was severe) but I have recently gone off the oil, to see how I would go without it - and so far, so good!  I have the occasional ache but not as devastating as before .... but they usually say that if it goes to your bones (ie metastasises) - the ache is 'different' - sort of more 'deep seated' - just 'different'.   I had 'similar' aches (particularly at night) last year & my Onc sent me to the Nuclear Medicine dept for in-depth full body scans. .... all on Medicare .... 

How long have you been on AIs?  Some find that the aches & pains subside after 'time' - it's just that everyone's 'time' ... varies!  :(  

Where abouts are you? State/town?  We may have members nearby who can point you to specific services available to you there?  You can add it in your 'profile' .....  And you ARE able to change Oncs as well, (I did!) particularly if you find that yours isn't as supportive of you as they should be - and members may be able to point you to a different centre for support if they know what area you are in. xx

Also, jump onto this thread for some links on the blog that you might like to check out ....
https://onlinenetwork.bcna.org.au/discussion/23961/welcome-new-members#latest

take care & if you start feeling REALLY down & sad about what's happening - please ring the Helpline (number at the top of the page) tomorrow and chat with someone - or contact your Cancer centre who should be able to put you onto someone to help you work thru your concerns.  You DON'T have to do this on your own xx