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Spirit-Harmony's avatar
Spirit-Harmony
Member
7 years ago

are you classed as having Breast cancer

Hi everyone, my name is Sue and 6 weeks ago now I was diagnosed with Invasive Lobular Cancer... Everything happened so quickly diagnosis, tests, more tests, then surgery. 
I had a lumpectomy and my tumour was 11.6 mm, The Dr took the sentinal node, and found no cancer cells in it, and say he got it all and is happy and to see him in 6 months.. :)
I see the Medical oncologist next Thursday for the next phase, Radio therapy, and medication
my Question is.. Am i still classed as having Breast cancer? if so for how long is the 5 years? 
Any advice would be appreciated 
much love everyone 

anxiety
diagnosis
emotions
hormone-therapy
lumpectomy

9 Replies

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  • kmakm's avatar
    kmakm
    Member
    7 years ago
    DCIS is Ductal Carcinoma In Situ. It gets called pre-cancerous cells sometimes, and sometimes Stage 0. You would have had LCIS. These cells can sit in your breast for decades and do nothing, but when they move outside the duct or lobe, that is when you have invasive cancer, a tumour.

    I am doing OK-ish. I'm having some healing issues with my mastectomy & reconstruction incisions which are slowing me down a bit. You put your finger on it when you say the emotional and mental side is more difficult. Word sista!

    My mum had BC in 1986 and survived. She's still going strong at 83. My sister unfortunately didn't survive it. She died two years ago this month, at 47. It puts a different spin on having this disease when you've watched a family member die from it. You have my sympathy. Hang in there, we're here for you. K xox
  • Spirit-Harmony's avatar
    Spirit-Harmony
    Member
    7 years ago
    arpie said:
    Hi Sue @Spirit-Harmony

    I was also diagnosed with invasive lobular cancer (caught early, so similar size to you), in Jan. I had good clearance and no node involvement.  After surgery I had radiation and am now 1 month into Letrozole for 5 years. 

    Same me as being pregnant, I reckon ... you have the baby and you are no longer pregnant ...  

    The mopping up exercise is to try and ensure that it doesn’t return .... tho there can be no iron clad guarantees, unfortunately.  :( 

    I hope you are recovering well from the surgery .... ask away any questions you may think of!
    Hi arpie, thank you for that... I am doing good a bit sore but nothing in comparrison to some women on this page.. This is an aweome place to come with questions, as when you are att he Dr you forget everything and think of it after.. hope you are doing well xx 

  • Spirit-Harmony's avatar
    Spirit-Harmony
    Member
    7 years ago
    Eastmum said:
    Hi @Spirit-Harmony - I was diagnosed with invasive lobular carcinoma in January and had a double mastectomy in April. 

    It sounds like they found your breast cancer really early which is very lucky with lobular, as it's so incredibly hard to detect.

    I was told that I had probably had it for over a year and by the time of my surgery, it was very extensive throughout my breast - in fact, I had it bilaterally.

    I'm now going through chemo, will have radiation and then hormone therapy in the future. 

    Having said that though, the side that had the largest amount of cancer (a whopping 16cms) had clear sentinal nodes, and on the other side, although there was sentinal and axillary node involvement, it was very minimal. All my staging scans - chest, abdomen, pelvis, bone - have come back clear - so no metastasis.

    So I agree with @kezmusc - I consider myself as having HAD breast cancer. And when I tell people what I'm going through, I like to say that I had surgery for breast cancer in April. The surgery was successful in removing all the cancer, and I'm now going through treatment for insurance purposes and to 'mop up' anything that could potentially rear its ugly head in the future.   

    All the best of luck with your treatment! xxx
    Eastmum said:
    Hi @Spirit-Harmony - I was diagnosed with invasive lobular carcinoma in January and had a double mastectomy in April. 

    It sounds like they found your breast cancer really early which is very lucky with lobular, as it's so incredibly hard to detect.

    I was told that I had probably had it for over a year and by the time of my surgery, it was very extensive throughout my breast - in fact, I had it bilaterally.

    I'm now going through chemo, will have radiation and then hormone therapy in the future. 

    Having said that though, the side that had the largest amount of cancer (a whopping 16cms) had clear sentinal nodes, and on the other side, although there was sentinal and axillary node involvement, it was very minimal. All my staging scans - chest, abdomen, pelvis, bone - have come back clear - so no metastasis.

    So I agree with @kezmusc - I consider myself as having HAD breast cancer. And when I tell people what I'm going through, I like to say that I had surgery for breast cancer in April. The surgery was successful in removing all the cancer, and I'm now going through treatment for insurance purposes and to 'mop up' anything that could potentially rear its ugly head in the future.   

    All the best of luck with your treatment! xxx
    hi @Eastmum Im so sorry you had to have a double mastectomy, yes I know how luck I was, and it was all because my hushand is in the Navy and for some reason I thought I must change my address with Breast screen... she said to me " you are not due for you mammogram until december, but did you want to have it now? so it would have been another 7 months down the track.. The Dr expained how hard it is to detect and even after I knew where it was I still couldnt find it... wishing you all the very best xx
  • Spirit-Harmony's avatar
    Spirit-Harmony
    Member
    7 years ago
    kmakm said:
    Hi Sue. Sorry to see you here, but welcome. I hope you find it as helpful and supportive a place as I have.

    Strictly speaking with your tumour removed and no spread, you are officially NED - no evidence of disease. From here it's 'mopping up'.

    My tumour was 16mm, with no lymph node involvement, and was whipped out the day after diagnosis. I have gone with "I'm being treated for breast cancer" rather than "I have breast cancer".

    I asked my surgeon a similar question, when am I classed as a 'survivor'. His view was from the moment the tumour was removed.

    I had a re-excision for margins, which found a lot of DCIS. For a variety of reasons I ended up having a double mastectomy and the pathology found more DCIS. So for me, I'm choosing to start my five years, with the 90% survival rate, from the date of that last surgery. Roll on 27th April 2023!

    How are you doing Sue? K xox
    Hi kmakm Im doing ok its more the emotional and mental side I think, the questions you think of after you leave the Dr lol, I'm sorry to hear you had to have a double mastectomy.. what is DCIS? I like the 'I AM BEING TREATED FOR bREAST CANCER " better than the I have Breast Cancer..   My Mum and Grandmother passed away with this bitch of a disease, I looked after my Mum, she had a mastectomy but this was 9 years ago, so much has changed since then.. I remember the last time we went to her oncologist and she said to Mum " we don't need to see you again, all is good" until about a year later when she tripped getting out of my car and broke her hip, we were all very surprised that a trip could do this... until the tests. metastisised... so yeah getting the recall totally freaked me out then all the tests and trying to get my head around saying I have Breast cancer" 
    But so happy for this online support.. I hope you are doing good xx
     
  • arpie's avatar
    arpie
    Member
    7 years ago
    Hi Sue @Spirit-Harmony

    I was also diagnosed with invasive lobular cancer (caught early, so similar size to you), in Jan. I had good clearance and no node involvement.  After surgery I had radiation and am now 1 month into Letrozole for 5 years. 

    Same me as being pregnant, I reckon ... you have the baby and you are no longer pregnant ...  

    The mopping up exercise is to try and ensure that it doesn’t return .... tho there can be no iron clad guarantees, unfortunately.  :( 

    I hope you are recovering well from the surgery .... ask away any questions you may think of!
  • Blondy's avatar
    Blondy
    Member
    7 years ago
    Spirit -Harmony, am a very similar story. Lobular, clear margins and lymphs. Grade 3 lump and was recommended the chemo plus radiation. Radiation would have been all,l if lump smaller. I see myself as having had breast cancer and view the cgemo and radiotherapy as insurance, l had a tooth abcess once, pulled the tooth out, zip, gone. Had breast cancer once, cut it out, zip gone. That's how I'm coping. The price to pay is dealing with the effects of the treatment, and the mental fight. Considering the situations of a lot of people on this forum I wouldnt dare complain and am beyond eternally grateful. I wish I had the power to make their lives better.  I noticed at my local cancer therapy centre they are looking for volunteers to mind the small children of sufferers whilst they get a chance to rest. I really feel for  people with dependent families who may not  have the luxury of a lie down. So if  I  can help make it happen I will cert sinky be offering my services.

  • kmakm's avatar
    kmakm
    Member
    7 years ago
    Hi Sue. Sorry to see you here, but welcome. I hope you find it as helpful and supportive a place as I have.

    Strictly speaking with your tumour removed and no spread, you are officially NED - no evidence of disease. From here it's 'mopping up'.

    My tumour was 16mm, with no lymph node involvement, and was whipped out the day after diagnosis. I have gone with "I'm being treated for breast cancer" rather than "I have breast cancer".

    I asked my surgeon a similar question, when am I classed as a 'survivor'. His view was from the moment the tumour was removed.

    I had a re-excision for margins, which found a lot of DCIS. For a variety of reasons I ended up having a double mastectomy and the pathology found more DCIS. So for me, I'm choosing to start my five years, with the 90% survival rate, from the date of that last surgery. Roll on 27th April 2023!

    How are you doing Sue? K xox
  • Eastmum's avatar
    Eastmum
    Member
    7 years ago
    Hi @Spirit-Harmony - I was diagnosed with invasive lobular carcinoma in January and had a double mastectomy in April. 

    It sounds like they found your breast cancer really early which is very lucky with lobular, as it's so incredibly hard to detect.

    I was told that I had probably had it for over a year and by the time of my surgery, it was very extensive throughout my breast - in fact, I had it bilaterally.

    I'm now going through chemo, will have radiation and then hormone therapy in the future. 

    Having said that though, the side that had the largest amount of cancer (a whopping 16cms) had clear sentinal nodes, and on the other side, although there was sentinal and axillary node involvement, it was very minimal. All my staging scans - chest, abdomen, pelvis, bone - have come back clear - so no metastasis.

    So I agree with @kezmusc - I consider myself as having HAD breast cancer. And when I tell people what I'm going through, I like to say that I had surgery for breast cancer in April. The surgery was successful in removing all the cancer, and I'm now going through treatment for insurance purposes and to 'mop up' anything that could potentially rear its ugly head in the future.   

    All the best of luck with your treatment! xxx
  • kezmusc's avatar
    kezmusc
    Member
    7 years ago
    Hi @Spirit-Harmony,

    Welcome to the forum. I would say "had" breast cancer.  I counted it as gone once it was removed.  The rest of the treatment is precautionary I think. 

    xoxoxo