Forum Discussion
SELF CHECKING AFTER A DOUBLE MASTECTOMY AND LOBULAR CANCER
Hi all,
I have just had my reconstruction which hasn't been successful..(that's another long story) but I am wanting to know if any one had Lobular Cancer , double mastectomy and breast implants?
I was booked in for an MRI and my surgeon canceled this due to me having my tissue removed in both breasts, she then told me I have to self check my boobs as there is no screening etc.
Again I left the hospital appointment with no clue how to do this self checking, and my anxiety has hit the roof thinking...
I had no lumps in my breast that I felt and the mammogram picked up calcifctions not my cancer, and I was then told I have the 'Sneaky Cancer'
So how do I know if the cancer returns? if technology did not pick this up, how do I do this to 'prevent' this going to my lymph.(The breast Care nurse stated that I will feel a lump in my lymph)
But I don't want to get to the stage of it returning in my lymph.. Also I have the Zoledex injections every 28 days as I was high risk as near my chest wall.... how do I check the chest wall etc?
My breast care nurse said to speak to my oncologist at my next appointment, to show me how to test myself, but im wondering if anyone else had a double mastectomy with lobular and how is the after care with testing?
Thanks and hope you are all keeping well xx
I have just had my reconstruction which hasn't been successful..(that's another long story) but I am wanting to know if any one had Lobular Cancer , double mastectomy and breast implants?
I was booked in for an MRI and my surgeon canceled this due to me having my tissue removed in both breasts, she then told me I have to self check my boobs as there is no screening etc.
Again I left the hospital appointment with no clue how to do this self checking, and my anxiety has hit the roof thinking...
I had no lumps in my breast that I felt and the mammogram picked up calcifctions not my cancer, and I was then told I have the 'Sneaky Cancer'
So how do I know if the cancer returns? if technology did not pick this up, how do I do this to 'prevent' this going to my lymph.(The breast Care nurse stated that I will feel a lump in my lymph)
But I don't want to get to the stage of it returning in my lymph.. Also I have the Zoledex injections every 28 days as I was high risk as near my chest wall.... how do I check the chest wall etc?
My breast care nurse said to speak to my oncologist at my next appointment, to show me how to test myself, but im wondering if anyone else had a double mastectomy with lobular and how is the after care with testing?
Thanks and hope you are all keeping well xx
15 Replies
- with the lipografting is this taken from your legs or tummy? and this sounds like a great plastic surgeon too.. my team have nothing for me right now, not even a timeline for an appointment to see a plastic surgeon, just in limbo with really awful/deformed boobs. When they say its a long journey they aren't wrong lol. xxx
- No problem at all @roylej, we are all happy to help and offer support. Everyone here was so good to me when I really struggled with understanding everything going on. I guess one thing I have come to understand is just keep looking forward, you can have whatever you want to have now. My plastic surgeon really emphasised this to me. He said, ‘You haven’t had much control over things, but now you do and you get to have what you want. You tell us what you want/need.’ I use this to guide me. I have since had some lipografting around my implants - purely my decision as I felt my implants needed some ‘softening’ - and I am so happy I did it. You will need to advocate for yourself and make sure you have a very understanding team around you who ‘hear’ you. My team have always told me to make sure I am happy with the reconstruction as I will be looking at them for years to come. I am in the south of Brisbane. Feel free to message me. Take care 🌻
- its funny but if I would have know what I know now I would have had my nipples removed, the cancer side is so pale now with radiation and the non cancer nipple is pointing to the floor.... but I found out at Christmas and the breast care nurses both had Christmas off and told me not to google etc so I was probably not to educated, then again we are always learning hey! lol...
thank you for the chats and your time to help, means a lot to have support! take lots of care xxxx - Hi @roylej I didn’t have nipple sparing, but I have since had 3D nipple tattoos done - brilliant. I decided, that for me personally, I didn’t want the post surgery angst of trying to save one nipple as I knew it wasn’t recommended for the side that had ILC. After surgery, the pathology showed ‘abnormal cells’ in my good breast, not cancer, but they would have needed monitoring. This confirmed I had made the right choice to have the BMX. I spoke with my plastic surgeon quite early - half way through chemo - so I had a bit of time to think through my options. The tattooist I saw has developed a type of 3D tattooing which is really effective.
Thanks, and good tom know about the aches and full body scans, as I mentioned my hips, knees and ankle and they said they weren't worried and see me in 6 months! but I will request one soon as you are right I have to put myself forward as I feel you are just a number.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,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 🌸
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
I have been on excemastane for 18 months now, and thrown into menopause..
Im in North Brisbane area, near North Lakes.
Actually the lady I spoke to was from this site yesterday and she was amazing! best so far so that was refreshing..
Arpie, I honestly can't thank you for alll you advice and caring! I have took a good few things away with me..- 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 🌸
- Good on you @roylej - we've all been there ..... so just passing on knowledge xx
I went off exemestane & onto Anastrozole and doing much better - maybe just ask your onc if you can try a different AI! It took a while, but is much better (for me) than Letrozole or exemestane!
Yep - Ring the helpline here (phone number at the top of the page) anytime Mon-Fri .....
take care xx
Thanks, and good tom know about the aches and full body scans, as I mentioned my hips, knees and ankle and they said they weren't worried and see me in 6 months! but I will request one soon as you are right I have to put myself forward as I feel you are just a number.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
I have been on excemastane for 18 months now, and thrown into menopause..
Im in North Brisbane area, near North Lakes.
Actually the lady I spoke to was from this site yesterday and she was amazing! best so far so that was refreshing..
Arpie, I honestly can't thank you for alll you advice and caring! I have took a good few things away with me..xxxxx- thank you for the hugs Jenny.. so lovely.. and me too, did speak to someone yesterday who was just so helpful and lovely, its just finding the compassionate ones hey xxx
- 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
