Forum Discussion

Beb46's avatar
Beb46
Member
5 years ago

74 and newly diagnosed

Well here I am just turned 74 and diagnosed a week ago with invasive lobular carcinoma. Waiting to see oncology specialists and surgeons and find out what the treatment will be. From what the breast screen doctor and my own doctor have told me it won’t kill me and will just be a bloody nuisance and inconvenience for a while. That I can handle. Telling family and friends was the hardest part this week. Feeling a little anxious and keen to get the ball rolling and get rid of this uninvited guest in my breast.  Interested in hearing from others who have experienced ILC. 

coping
lobular-carcinoma
new-diagnosis
  • arpie's avatar
    arpie
    Member
    5 years ago
    Terrific that you are so physically active already, @Beb46 - it will hold you in good stead - and great that you have such a strong support network!  

    Fantastic that you have a dedicated oncology unit in Townsville & don't have to travel.   Your volunteer work with the Palliative care will give you special insight into that area - one of the hardest things for us is to accept that we've got the cancer in the first place!   Then we want it OUT then & there .... so I hope that you can have your surgery before Xmas - and then just focus on recovery.  Many of us are amazed at how well we recovered from the actual surgery - once it is 'gone' that mental load is lifted.  

    Take care, all the best & hope you get your date soon xx

  • Cath62's avatar
    Cath62
    Member
    5 years ago
    @Beb46 sorry about your diagnosis. This group is great for support and yhe comments from the other ladies are wonderful. Just wanted to say that exercise is wonderful to do as you go through all this. I am a big walker and I continued this through chemo and radium treatment which absolutely saved me in terms of how I felt daybto day  how I bounced back. My oncologist said if she could give everyone a pill called exercise she would. Studies show exercise is incredibly important in assisting during treat and after treatment and reduces the risk of cancer returning. In saying this some days you just need to rest to. You are going through a big thing. Good luck with it 🌷
  • Beb46's avatar
    Beb46
    Member
    5 years ago

    Thanks Argie for the fantastic information . I am in Townsville north Qld and will be going through the general hospital here. Fortunately they have a very new oncology unit with all the latest equipment etc. I have been a volunteer with palliative care for 11 years and have had lots of patients with cancer but never imagined I would be diagnosed myself..... not that in any way I think I will be in a palliative situation. I also am very active with aqua aerobics, Zumba aqua, walking, hula hooping and tai chi so I am hoping these activities will help in my journey. I also have a very strong support network from these activities which is a blessing.
    Thank you for your support and all the best in your journey.
  • Beb46's avatar
    Beb46
    Member
    5 years ago
    arpie said:
    SO Sorry to see you here, @Beb46 ... but Welcome to the club that no-one really wants to join!  
    Here, You can raise ANY issue, and get helpful replies from those who’ve gone before you.  Nothing is off limits.  We have ‘private groups’ for some more personal discussions (including an ILC Group.) .... so feel free to join any of them, if they suit you.

    whereabouts are you?  You can add your state/town in your Profile ... we may have members nearby who can advise of local services available to you xx

    Once you see your surgeon, your ‘plan’ will start to come together, but it is only after the surgery and pathology that the follow up plan will be formulated with the oncologists.  Your surgeon may offer suggestions but they will have the final word.

    We all know the absolute turmoil that comes with the BC diagnosis .... I am in my late 60s and was diagnosed with ILC 3 years ago. I had a lumpectomy, radiation and now on hormone reduction TABs. 

    If you can, take someone with you to your appointments for support - as it can be daunting sitting there alone and even record the meetings on your phone for future reference. 

    Your whole world is turned upside down in a millisecond, as you have to navigate unknown areas of our health system! It is almost a conveyor belt! First you do this, then this, then go there and do that, then come back here and do this ....

    It is also totally 100% ok to skip between anger, denial, sadness - but if your find the sadness is overwhelming you, please seek professional help! Your GP may be able to refer you ... or your local Breast Cancer Centre May have help there too.

    I found that it mucked with my BRAIN more than anything else!  And sometimes that is very hard to control, as it has a mind of its own! Keeping BUSY doing things is the secret .... get back into your hobbies or take up a new one - even more so now with Covid as we can’t get together with buddies as readily as before.  

    Wishing you all all the best .... this isn’t the Xmas you were planning, I know ... mine was found in Nov and not confirmed til Jan, so know that special feeling of anxiety!  Grrr 

    Try & keep your sense of humour 'up there' - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!)  Just click on the link to add pics and posts ... 
    https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest
    If you are into arts & crafts, we have a 'Creative Corner' 
    https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest
     and if into your garden, a Gardening post as well!! 
    https://onlinenetwork.bcna.org.au/discussion/comment/186078#Comment_186078

    All the best with your ongoing appointments.   We have some posts here on what to take with you too, to make it 'easier' on you.  
    https://onlinenetwork.bcna.org.au/discussion/16442/prep-for-surgery/p1

    and for your annual checkups/follow ups, here are some ‘tick sheets’ to help you put your questions together for your medical team.
    https://onlinenetwork.bcna.org.au/discussion/21973/questions-to-ask-post-surgery-of-yourself-to-your-specialists-tick-sheets-self-assessment#latest

  • Ecup2020's avatar
    Ecup2020
    Member
    5 years ago
    Hi there,
    you have lots of good advice in the comments above.
    I was diagnosed with lobular breast cancer in left breast  at the end of August and had a mastectomy beginning of October with insertion of tissue expander as stage 1 reconstruction to be completed in a few months time.
    I didn’t need chemo but am currently half way through 5 weeks of radiotherapy.
    i now know a lot more about breast cancer than I ever wanted to, including that lobular is only 10 to 15% of breast cancers, the great majority is ductal.
    i understand lobular is more likely to be strongly hormone receptor positive which is good and bad.
    Good because they have tablets to help prevent the cancer recurring, but bad because lots of people seem to experience side effects.
    If you are having breast conserving surgery rather than a mastectomy usually they will want to do radiotherapy.
    My number one tip is take someone with you to all important medical appointments as you probably won’t take everything in.
    All the best and there are some great people on her to help with questions.
  • Sister's avatar
    Sister
    Member
    5 years ago
    What they said!  Welcome.  i am nearly 3 years from diagnosis of ILC and i remember very well the feeling of wanting to get it out.
  • Afraser's avatar
    Afraser
    Member
    5 years ago
    Dear @Beb46

    Welcome to the network, even though you’d really rather be somewhere else. Well done on working out very quickly that yes, it will be a bloody nuisance and inconvenience, but you’ll get through it! I’ll leave it for others with ILC to discuss your diagnosis, just wanted to wish you well. Getting the ball rolling - even if it all gets a bit unpleasant on the way - is the only way forward! Best wishes. 
  • arpie's avatar
    arpie
    Member
    5 years ago
    SO Sorry to see you here, @Beb46 ... but Welcome to the club that no-one really wants to join!  
    Here, You can raise ANY issue, and get helpful replies from those who’ve gone before you.  Nothing is off limits.  We have ‘private groups’ for some more personal discussions (including an ILC Group.) .... so feel free to join any of them, if they suit you.

    whereabouts are you?  You can add your state/town in your Profile ... we may have members nearby who can advise of local services available to you xx

    Once you see your surgeon, your ‘plan’ will start to come together, but it is only after the surgery and pathology that the follow up plan will be formulated with the oncologists.  Your surgeon may offer suggestions but they will have the final word.

    We all know the absolute turmoil that comes with the BC diagnosis .... I am in my late 60s and was diagnosed with ILC 3 years ago. I had a lumpectomy, radiation and now on hormone reduction TABs. 

    If you can, take someone with you to your appointments for support - as it can be daunting sitting there alone and even record the meetings on your phone for future reference. 

    Your whole world is turned upside down in a millisecond, as you have to navigate unknown areas of our health system! It is almost a conveyor belt! First you do this, then this, then go there and do that, then come back here and do this ....

    It is also totally 100% ok to skip between anger, denial, sadness - but if your find the sadness is overwhelming you, please seek professional help! Your GP may be able to refer you ... or your local Breast Cancer Centre May have help there too.

    I found that it mucked with my BRAIN more than anything else!  And sometimes that is very hard to control, as it has a mind of its own! Keeping BUSY doing things is the secret .... get back into your hobbies or take up a new one - even more so now with Covid as we can’t get together with buddies as readily as before.  

    Wishing you all all the best .... this isn’t the Xmas you were planning, I know ... mine was found in Nov and not confirmed til Jan, so know that special feeling of anxiety!  Grrr 

    Try & keep your sense of humour 'up there' - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!)  Just click on the link to add pics and posts ... 
    https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest
    If you are into arts & crafts, we have a 'Creative Corner' 
    https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest
     and if into your garden, a Gardening post as well!! 
    https://onlinenetwork.bcna.org.au/discussion/comment/186078#Comment_186078

    All the best with your ongoing appointments.   We have some posts here on what to take with you too, to make it 'easier' on you.  
    https://onlinenetwork.bcna.org.au/discussion/16442/prep-for-surgery/p1

    and for your annual checkups/follow ups, here are some ‘tick sheets’ to help you put your questions together for your medical team.
    https://onlinenetwork.bcna.org.au/discussion/21973/questions-to-ask-post-surgery-of-yourself-to-your-specialists-tick-sheets-self-assessment#latest