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KezzaG's avatar
KezzaG
Member
7 years ago

Stage 3 Invasive Lobular Cancer diagnosis

Hi everyone, this is my first time on here and I've been reading everyone's stories and comments.  What an amazing bunch of people that are here.  Having read so many stories has encouraged me to post my on story and questions that I hope some of you  may have an answer on or even just an opinion on.
I'd been having regular mammograms for a few years as my Mum had breast cancer a number of years ago.  She had an optional mastectomy and is still going strong today, 15 years later.
My last mammogram was in March this year and I was given the all clear and advised I didn't need to come back for 2 years. In early August whilst showering though I found a small lump in my breast.  I wasn't overly concerned but went to the doctor and he sent me for an US.  The results of the US showed a small lump but also a swollen lymph node.  I was then sent for biopsies and an MRI. The biopsies returned showing cancer in the lump and the lymph node. The MRI also showed a small lump. I was booked into the surgeon 3 days later and was advised that I could have a lumpectomy but was offered a mastectomy if I wanted.  I absolutely didn't want a mastectomy. One week later I had the surgery and was thinking that I was glad that was over and done with.  The removal of the lymph nodes and my right arm was definitely far more painful and difficult to manage than the actual lumpectomy.  But I was glad it was all over and done with.
5 days later I returned to the surgeon only to be told that 9 out of 21 lymph nodes removed were cancerous along with the surrounding tissue from the lump.  She advised I had Stage 3 Invasive Lobular cancer and had to have a mastectomy on my right breast and needed to consider having my left breast removed as well. Talk about totally shell shocked..... I couldn't understand or stop crying. 
After as much research that I could fit into a few days and many discussions with family and friends I opted to have both breasts removed. It's been the hardest thing to come to terms with.  I know everyone is different and some women make this choice willingly but it was one of the hardest things I've had to do for me personally.  I was very large busted (Double F) so my boobs were definitely a big part of me! 
When I returned to the surgeon after my double mastectomy she advised me that on examination of my right breast after the surgery that the cancer growth in total was over 12cm. I was absolutely blown away.  How could this be missed on all of my mammograms and the MRI???  I was told that the Lobular cancer grows like a spiderweb and is very hard to detect, where as Ductal cancers are more common and grow into lumps which are much more visible in scans and easier to feel.  The surgeon told me I was lucky at all to feel a lump myself as most women with this cancer don't feel anything.  I can't even explain what was going through my head at this time. 
My Oncologist has since advised my that 90% of breast cancer is Ductal and only 10% is Lobular. 
I've just undergone my second chemo treatment and have 14 to go followed by 6 weeks of radiation. 
I'm still shell shocked everyday and emotions are just all over the place.  I am truly blessed to have an amazing partner who has been more supportive than I could ever have imagined and the most beautiful family and friends that support me everyday.  
I'm really interested to hear from anyone that has been diagnosed with this same cancer or from anyone that has and advice or feedback on moving forward. I'm inspired by the stories I've read on here and the beautiful messages of support.
Thank you for taking the time to read my long winded story :smile:
KezzaG