SELF CHECKING AFTER A DOUBLE MASTECTOMY AND LOBULAR CANCER

@roylej

I hope someone else can assist you (my cancer was quite different) but I would be making a list of questions for your oncologist, as early as possible, as this seems to be remarkably vague and unhelpful advice. I assume the reference to lymph nodes are around the armpit (they are found in many places in the body!) but even though I had a lot of nodes removed (many were enlarged, but only one malignant) I could not feel them at all prior to surgery. I hope you get some clearer advice very soon. Best wishes. 

@roylej - welcome to the club that no-one ever wanted to join!  :( 

OMG!  It sounds like your surgeon (and possibly breast care nurse) are not very sympathetic to your plight .... I am sure they could/should be able to give you more information!

Feel free to tell us some more of your story so far - we have a few who've not had successful recons (was your recon/implants removed?) .... they may be able to advise you better with a bit more info ..... I know that those with implants don't usually have mammograms due to the chance of them bursting - even if there IS still flesh left behind ..... 

I am lobular (and mine was totally missed on the Mammogram & it was 'only just' picked up on the Ultrasound) - but I did not have a mastectomy .... and yes it is the sneaky one. Sadly, Lobular can also have a higher recurrence rate than other types of BC, even after a mastectomy (unfortunately) as not ALL flesh is necessarily removed from the chest wall.   

Re knowing if it has recurred .... Definitely keep an eye out for odd lumps & bumps - You would also need to remain vigilant of any persistent aches & pains in your body that last longer than a few weeks - and if you DO notice anything untoward - ring your Onc and get bone density scans & MRI/CT etc, and get checked over by them as well.

Check out this post from 2019 (so relatively 'current') ...... when you are on the Discussion Page, you can put in the 'search bar' the words you want searched - I put in "Yearly Scan Double Mastectomy"
https://onlinenetwork.bcna.org.au/discussion/20422/looking-for-information-re-scans-or-ultrasounds-after-having-double-mastectomy

take care & all the best .... xx

Afraser said:

@roylej

I hope someone else can assist you (my cancer was quite different) but I would be making a list of questions for your oncologist, as early as possible, as this seems to be remarkably vague and unhelpful advice. I assume the reference to lymph nodes are around the armpit (they are found in many places in the body!) but even though I had a lot of nodes removed (many were enlarged, but only one malignant) I could not feel them at all prior to surgery. I hope you get some clearer advice very soon. Best wishes. 

thank you I will certainly make a list and I have felt vague all the way through cancer, its certainly been an eye opener how you have to look for things yourself, when its the last thing you want to do..  and as stated earlier I was lucky that the cancer did not travel to my lymph nodes, but now im worried this is the next thing I may face.  thank you again for your reply and much love to you and hope your journey is much clearer for you xx

arpie said:

@roylej - welcome to the club that no-one ever wanted to join!  :( 

OMG!  It sounds like your surgeon (and possibly breast care nurse) are not very sympathetic to your plight .... I am sure they could/should be able to give you more information!

Feel free to tell us some more of your story so far - we have a few who've not had successful recons (was your recon/implants removed?) .... they may be able to advise you better with a bit more info ..... I know that those with implants don't usually have mammograms due to the chance of them bursting - even if there IS still flesh left behind ..... 

I am lobular (and mine was totally missed on the Mammogram & it was 'only just' picked up on the Ultrasound) - but I did not have a mastectomy .... and yes it is the sneaky one. Sadly, Lobular can also have a higher recurrence rate than other types of BC, even after a mastectomy (unfortunately) as not ALL flesh is necessarily removed from the chest wall.   

Re knowing if it has recurred .... Definitely keep an eye out for odd lumps & bumps - You would also need to remain vigilant of any persistent aches & pains in your body that last longer than a few weeks - and if you DO notice anything untoward - ring your Onc and get bone density scans & MRI/CT etc, and get checked over by them as well.

Check out this post from 2019 (so relatively 'current') ...... when you are on the Discussion Page, you can put in the 'search bar' the words you want searched - I put in "Yearly Scan Double Mastectomy"
https://onlinenetwork.bcna.org.au/discussion/20422/looking-for-information-re-scans-or-ultrasounds-after-having-double-mastectomy

take care & all the best .... xx

hi and thank you for your response x

I got told I was to have a masectomy straight away.  I met a girl who had SIX tests and all came back negative and she knew there was something odd, so she paid for the biopsy to find out she did have Lobular Cancer, it had traveled to her shoulders and chemo and mastectomy was done.

With this the fear in me was huge, thinking how on earth did they miss It with all these tests, and thank god she persisted when they told her she was cancer free.

With this, I asked if I would be able to have both breasts removed and was told it was to late, but they would not forget me.

my surgeon was a professor and highly regarded, he took my cancer boob away and then semi retired.  After a few months I asked my new surgeon about removing the non cancer boob to which she said absolutely not as there is nothing wrong, it is a perfectly good breast and they will just monitor it.

I was sinking into the chair and luckily asked her to go back through my notes to which the previous surgeon had recorded the conversation to remove the other breast.  it honestly felt like she was paying for my op, and she knows about my other friend an lobular, but made me feel like I was paranoid.

so two surgeons, two ways of doing it, so now I have a square boob with nipple pointing to the floor in folds of skin and the cancer boob, super high and my skin is so thin you can kinda see the implant.  So 3 months since my recon I look deformed.

so, im being super grateful I am here, and when the surgeon told me she wasn't confident moving my nipple etc, I didn't challenge it as covid and waiting times were delayed already, she told me it could be a year to see a plastic surgeon.  (I seen her last week and she couldn't even tell me if its 6 months to 6 years wait). so I feel let down.

I was a hairdresser in my younger days and I can honestly say, I gave more aftercare info for my clients hair than I received form the hospital.

I am English so don't know the system and not one nurse informed me about Physio, nor booked me in after my surgery, exercise physiologist ... thrown into menopause on top...zero! just come back when your bag drops to 20 for 3 days, that's it!!! so luckily I researched and friends guided me to certain therapies.

I could go on all day, but I honestly found the aftercrare shocking..... 

then this worry... im like... you let me walk out the hospital without showing me how to check myself, knowing my fear of no lumps with lobular and being high risk as was close to my chest wall.  wow!

There is definitely a need for a written programme for each woman with a treatment plan to get healthier and fit again...  mentally and physically... again lots of women may have received great service but I felt so left to fend on my own.

So that's my story, and thank you for the tips on scans as I've had all kinds of aches but put it down to my hormone therapy and menapause.

Have a lovely night and again thank you for taking the time to reply, means a lot xx

Take care..xx

Dear @roylej,

and

I hope you connect with some decent support and information soon!
Best wishes from jennyss in Western NSW

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

  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

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

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.

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

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

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 🌸