No Idea what to do
Hi, I'm only newly diagnosed and not sure which way to go. I have a second meeting with my breast surgeon today and I'll see the oncologist for the first time tomorrow. I have a 6cm Invasive Lob...
Forum Discussion
Hi @TKS
I was diagnosed with bilateral invasive lobular carcinoma in January this year - by the time it was discovered, I had probably had it for at least 12 months but more likely even longer. Generally, lobular is incredibly hard to detect and can be slow growing - please don't take my word for the non-aggressiveness however, that was my situation but it may not be yours - you'll get that info from your Breast Surgeon and Oncologist.
I told my breast surgeon that if it was a matter of life or death I would jump up on the operating table immediately however, I was fortunate to get the OK to delay my surgery until the end of Term 1 school holidays, which meant that I had no surgery or treatment until April 2018 and at that time, I had a double mastectomy - sentinal node clearance on both sides and a full axillary clearance in the left side. He said that in my case, it would make no difference to wait.
My post surgery pathology showed 16.5 cms of tumour in my right breast - with NO node involvement whatsoever, and 10.5 cm of tumour in my left breast with 2/4 sentinal nodes and 2/5 axillary nodes involved. Everyone agreed that there was absolutely no way that these carcinomas would have grown so big in 3 months - they had steadily been growing for well over a year and therefore I was lucky to have the time to delay my treatment to give me chance to really prepare for it, and research everything. And also during that time I did a weekend cruise :smile:
I'm also based in Sydney - happy to chat to you in private message if you're wanting advice on a particular hospital system.
Your Breast Surgeon and medical Oncologist will work together to sort out a plan for you and they'll let you know whether you are likely to be recommended to have chemo or radiation and also what type of surgery. Not everyone with lobular has a mastectomy - some have lumpectomy - your doctors will give you their recommendation. I was really happy with my medical team and was happy to take their advice.
I had all the staging scans and was very fortunate that there was no metastasis found, but I am going through Chemo treatment now to mop up anything that may have escaped detection and to give me insurance due to the node involvement and size of the cancer. After that, I'll have radiation on both sides and then hormone treatment because my tumours were both 100% receptive to ER and PR.
If you go down the mastectomy path, your reconstruction options will be largely determined by whether or not you have radiation, and your body type etc. That will be in the hands of a plastic surgeon - and if you do go down that path it would be a good idea to chat to a plastic surgeon before you have any breast surgery, so that you know what your options are likely to be.
Most major hospitals work with a multidisciplinary team that will usually involve your Breast Surgeon, your Oncologist, your Plastic Surgeon and often a Radiation Oncologist - often there will be more than one of each doctor there as well, to all give their opinions to ensure that you get the best treatment for your individual scenario.
Please ask any questions - these days before you have a concrete plan in your vision are so difficult! Once you really know what's happening, you'll feel much more in control and that makes a huge difference.
Good luck with your scan results for this afternoon - and definitely go on your family cruise!
xxxxxx
I was diagnosed with bilateral invasive lobular carcinoma in January this year - by the time it was discovered, I had probably had it for at least 12 months but more likely even longer. Generally, lobular is incredibly hard to detect and can be slow growing - please don't take my word for the non-aggressiveness however, that was my situation but it may not be yours - you'll get that info from your Breast Surgeon and Oncologist.
I told my breast surgeon that if it was a matter of life or death I would jump up on the operating table immediately however, I was fortunate to get the OK to delay my surgery until the end of Term 1 school holidays, which meant that I had no surgery or treatment until April 2018 and at that time, I had a double mastectomy - sentinal node clearance on both sides and a full axillary clearance in the left side. He said that in my case, it would make no difference to wait.
My post surgery pathology showed 16.5 cms of tumour in my right breast - with NO node involvement whatsoever, and 10.5 cm of tumour in my left breast with 2/4 sentinal nodes and 2/5 axillary nodes involved. Everyone agreed that there was absolutely no way that these carcinomas would have grown so big in 3 months - they had steadily been growing for well over a year and therefore I was lucky to have the time to delay my treatment to give me chance to really prepare for it, and research everything. And also during that time I did a weekend cruise :smile:
I'm also based in Sydney - happy to chat to you in private message if you're wanting advice on a particular hospital system.
Your Breast Surgeon and medical Oncologist will work together to sort out a plan for you and they'll let you know whether you are likely to be recommended to have chemo or radiation and also what type of surgery. Not everyone with lobular has a mastectomy - some have lumpectomy - your doctors will give you their recommendation. I was really happy with my medical team and was happy to take their advice.
I had all the staging scans and was very fortunate that there was no metastasis found, but I am going through Chemo treatment now to mop up anything that may have escaped detection and to give me insurance due to the node involvement and size of the cancer. After that, I'll have radiation on both sides and then hormone treatment because my tumours were both 100% receptive to ER and PR.
If you go down the mastectomy path, your reconstruction options will be largely determined by whether or not you have radiation, and your body type etc. That will be in the hands of a plastic surgeon - and if you do go down that path it would be a good idea to chat to a plastic surgeon before you have any breast surgery, so that you know what your options are likely to be.
Most major hospitals work with a multidisciplinary team that will usually involve your Breast Surgeon, your Oncologist, your Plastic Surgeon and often a Radiation Oncologist - often there will be more than one of each doctor there as well, to all give their opinions to ensure that you get the best treatment for your individual scenario.
Please ask any questions - these days before you have a concrete plan in your vision are so difficult! Once you really know what's happening, you'll feel much more in control and that makes a huge difference.
Good luck with your scan results for this afternoon - and definitely go on your family cruise!
xxxxxx