Hi everyone
I was diagnosed with a large invasive lobular cancer in mid December . I had a breast MRI just after Christmas and then was told I would need a mastectomy with a plan for an implant at the same time . The plan was for surgery , radiotherapy after 2 months but with chemo also being suggested that it might be needed. I was given a date for surgery. When I saw my consultant the following week she suggested a mastectomy and diep reconstruction might be a better option for me long term instead - I went to a different hospital to see their team and I now have a date for this surgery in 2 weeks time depending on a staging ct scan which I have not yet had . I really hope this doesn't throw anything else up which would delay things again . My biggest worry is that it has spread and surgery won't be an option at all . My lymph nodes looked clear beginning of December when I had an ultrasound but , apart from physical exams from the doctors ( who say they can't feel anything in my armpit ) I've not had a whole body check .
It's been a roller coaster with different plans and different dates being suggested and agreed and then changing again and the anxiety of what will happen in the future is difficult to cope with at times - it's hard going isnt it ?
Got routine mammogram recall letter with hospital on Christmas Eve with hospital appointment for January 4th. Had scans and biopsy and nurse chat.
Biopsy found invasive lobular. Told 10mm but Im expecting it to be larger. Preparing for larger so I won’t be shocked. Have had MRI and going for results on Thursday. Its the waiting that gets to you. I just want to get on with it what ever it is !!! I like to be in control and organised but I’m not at the moment.
I’ve frozen my gym membership and got refund on jive dance classes. Doubt I’ll be up to that for awhile even if lumpectomy. Trying not to catch covid incase that delays things. A little bit of control and organising if only in my diary.
Hi
I have lobular cancer diagnosed in October, mastectomy November and starting chemo tomorrow.
It is frustrating when dates change and you are right to expect things to change.However I wouldn't;t worry that surgery won't be an option , that is the biggest part of getting rid if the cancer and I don't think they would have suggested a mastectomy if its not possible.
I have been given three different sizes for mine on ultrasound, MRI and mammogram , initially not seen in lymph nodes but one was positive and I am now having chemo, but this is why they check the lymph nodes in surgery ,to catch it so they will be doing all they can to prevent a spread.
I haven't had a whole body check either despite asking surgeon and oncologist which is hard to accept , but they assure me any stray cells would be too small to be seen on any scans so I'm holding on to that.
My mastectomy has healed well and not painful.
Good luck x
I too had a large lobular tumour, no obvious lymph nodes on scans but after mastectomy (without reconstruction) the 2 sentinel nodes was found to contain cancer so had auxiliary clearance last month. Luckily the other 26 nodes were all clear.
I did have several scans of body and bones . Due to various pains so they wanted to check for spread elsewhere (luckily all clear) but like your doctor explained, they cannot pick up stray cells so maybe this is why they haven’t scanned .
the mastectomy itself is a lot less painful than I was expecting but would imagine is more painful if you are having a reconstruction at the same time.
I was told if the tumour is over 5cm they offer chemo and as I also had 2 positive nodes will be starting 1st chemo on Friday.
Its very difficult especially when our minds begin to run away with us . We can all fully relate to how anxious and worried you are . It does help to know there’s people on here always willing to give support and advice .
I do hope you get a definite date sorted and wish you all the best with your surgery and recovery.
Dear Missi k
Thank you for your reply and good luck with your chemo - I have been told mine is 80-90 mm so if the same pathway is in place at our hospital I am guessing I will have to brace myself for chem too
Keep me posted how you get on x
Thankyou Chickencoop,
My tumour was 9.5cm , pretty scary size so I was expecting more lymph node involvement, although as I understand lobular is a bit of a lazier cancer . My mammogram 19months previously never detected it so I’m guessing it had been growing for quite some time undetected until I noticed some pain and pulling in of the nipple area and the suspicious area picked up on ultrasound and biopsies .
Im nervous of the chemo but trying my best to be brave . Had lots of good advice from the ladies on this forum and following their journeys is helping loads.
Dear Missi k
Your story is so similar to mine - i had a mammogram about 22 months prior which didn't show anything and it was discomfort and a slight pull to the left of my nipple which prompted me to go to my GP
You are right in the fact that talking to others can be really helpful - take care and I wish you all the best for Friday x
Dear Gracie 69
Thank you for your reply and positive thoughts :) I wish you all the very best for your chemo starting tomorrow
Keep in touch x
Thanks had Picc line put in but chemo is delayed due to blood test showing low immunity, try again Thursday, like I say things are always changing.
Hope you are Ok , let us know how you are getting on x
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