74 and newly diagnosed

Beb46
Beb46 Member Posts: 17 ✭
edited January 2021 in 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. 

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Comments

  • arpie
    arpie Member Posts: 8,122 ✭
    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
  • Afraser
    Afraser Member Posts: 4,441 ✭
    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. 
  • Sister
    Sister Member Posts: 4,961 ✭
    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.
  • Ecup2020
    Ecup2020 Member Posts: 15 ✭
    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.
  • Beb46
    Beb46 Member Posts: 17 ✭

    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

  • Cath62
    Cath62 Member Posts: 1,459 ✭
    @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 🌷
  • arpie
    arpie Member Posts: 8,122 ✭
    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

  • MicheleR
    MicheleR Member Posts: 352 ✭
    Hi @Beb46,

    Sorry to hear of your unwanted birthday experience. 

    I was diagnosed with ILC in late June and still going through treatment. I had quite a large cancer though. I remember well some of the things you speak of. Telling family was difficult and emotional. In the beginning you want to protect them and yourself. Your head is still spinning and you are trying to get to grips with it.

    I remember how long getting to action seems to take, endless googling and the uncertainty. It sort of unravels as you go along.

    I had a single mastectomy and i was under the impression that i would recover in about 2 weeks  where i got this from i dont know. I didnt fully grasp that the solution might be more.  It is a short operation in many cases but it takes time to recover from as do your emotions.

    I have really now only fully accepted the diagnosis and what it means. Like you i have a good prognosis following treatment. Treatment can be long and less than glamorous but  a positive attitude will buoy you along as you go. You may also experience other emotions like annoyance, questioning, crying, ranting. All normal. There is a kind of grief that i experienced for the loss of my pre-cancer life and my carefreeness. This wasnt on my radar.

    There are so many more experienced people than me to gleen info from and so many resources here, cancer council, breast care nurses, doctors, cancer service groups and patients themselves are brilliant sources to hold you up when you need it.  But if you need please feel free to ask any questions you may have. 

    I wish you well
    Michele



  • Beb46
    Beb46 Member Posts: 17 ✭
    Thank you all so much for the advise, suggestions , encouragement etc. I really appreciate it. It’s amazing how something so awful can bring strangers together to support and care for each other. We are so fortunate to live in this modern world of technology . So different to the experience women in earlier generations had when diagnosed with breast cancer. Biggest hugs to you all 🤗
  • Dory65
    Dory65 Member Posts: 323 ✭
    Big hug to you @Beb46 :)
  • Beb46
    Beb46 Member Posts: 17 ✭
    Thanks Dory65 and same back to you.🤗
  • Locksley
    Locksley Member Posts: 974 ✭
    Hi and welcome.  Sorry to see you here.   Forum is a great place to vent, ask questions. feel safe. 
  • Beb46
    Beb46 Member Posts: 17 ✭
    thanks Locksley🤗

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