Hi,
Im 4 weeks post bilateral mastectomy. My surgery results show pleomorphic lobular type cancer er+pr+ her2-. The cancerous area was 12cm in left breast and 4mm in right. I had 10 lymph nodes removed and all positive for cancer with invasion into tissue around them. I am just wondering if anyone has had Surgery followed by Radiotherapy and chemo last? I was waiting on an appointment for chemo but have recieved one for radiotherapy. I havn’t really heard of anyone having radio before chemo so I was hoping to find more info on this.
1 Like
Hi @want2beme I hope you’re recovering well? I too was diagnosed with pleomorphic lobular - had a mastectomy and 2 lymph nodes positive 3.7cm tumour - ER/PR + HER2-. It’s pretty rare so I hardly see any posts about it. I am in the middle of chemo to be followed by radiotherapy, letrazole, biophosphonates and Ribociclib. Not sure about radiotherapy before chemo though as mine is after.
How are you feeling about everything? Chemo has not been as bad as I envisaged so that is a positive.
Hope you get some answers Sxx
1 Like
Hi sharync,
Thanks for your reply. I am recovering well thanks, I stayed flat to make it easier but have some swelling and cording still. Im staying mostly positive. I think I was just so relieved I had a clear CT scan in Feb. Although now in the back of my mind I think sneaky lobular hiding on the scan!
Good to hear the chemo is not as bad as u thought. How many cycles of chemo are u having?
Thats alot of medication after. Do u mind me asking your age? Im 44 and was told I would be on something beginning with A (cant rem) after treatment for 2 years. I was put on tamoxifen on the day i was given my diagnosis. No side effects thankfully.
Hi @want2beme
Good to hear you are recovering well. That’s good. I am flat too as the surgery had to be done as soon after diagnosis because of the lymph node involvement and there was no plastic team available at short notice. But I’m happy enough as pleomorphic has a higher risk of early reoccurrence and hopefully I’d spot this more easily with no reconstruction.
I’m mostly positive now - I wasn’t until I spoke to my oncologist and she had my plan. As pleomorphic is an aggressive subtype and higher risk of reoccurrence I’m getting everything thrown at it. Which I’m ok with so far and feel this will be the best way to beat this. I too had clear CT scans and bone scans thank god. But yes I agree about lobular and the sneakiness - it is very concerning. All the waiting for scans and results is so scary.
I am 54 and post menopausal so will have letrozole after radiotherapy for 10 years instead of tamoxifen and then biophosphonates for bone strengthening and preventing bone cancer for at least 3 yrs. The Ribociclib is a newer drug for high risk early stage hormone positive her2 negative breast cancer and taken for 3 years. I think the one you may mean is Abemaciclib which is similar to Ribociclib but taken for 2 years.
Do you know why you are having tamoxifen already? Are you definitely having chemo? I was meant to have 4 rounds of dose dense EC and then the same of Paclitaxol. I ended up having 2 full doses of EC 2 weeks apart but then had very low neutrophils and had to have reduced doses and delays for last 2. Then I switched to weekly Paclitaxol for 12 weeks to prevent the low neutrophils happening. I’ve had 5 - no 6 this week. It’s much easier than EC - just tired really. EC was exhausting and I felt sick etc. But still not as bad as expected.
I’ll have a break after chemo then 3 weeks radiotherapy before the other meds
When was your diagnosis? Did they tell you much about pleomorphic? They didn’t tell Me much so I researched it myself which was scary at times but feel ok about it as best that I can now. Try not to think about the pleomorphic aspects And concentrate on fighting the cancer. What was the reasoning for bilateral mastectomies? I was not offered this.
Sxx
1 Like
Hi @sharync,
I was diagnoised with stage 2/3 grade 2 lobular on 4th Feb (World Cancer Day 
). I was told that I would have surgery first then radiotherapy, and given tamoxifen that day, not sure why it was given straight away, i just guessed it was to slow it down as there would be a few weeks until surgery and the tumor was a minimum 5cm already.
I had CT scan, neck to pelvis , with contrast on 15th Feb. Once this came back clear I was booked for mastectomy and lymph nodes on left breast. The surgeon actually agreed to take the right breast too, which I was surprised about as I had read they usually wont take good ones. However he sent me for a breast MRI on 2nd March and that showed a 4mm area of cancer in the right breast, that hadnt shown up on any mammogram or CT, so that ment bilateral for sure. I had come to that decision in my head anyway so I was ok about it in one way but disappointed there was another tumor in my body.
The surgeon was on hols then for a bit so I came off tamoxifen for 2 weeks and had my surgery on March 26th. Got surgery results 3 weeks later and all 10 lymph nodes that were removed were positive with an 8mm spread into the surrounding tissue. So im guessing theres some left cancer behind in there still. I asked the surgeon twice would he go back in and take more lymph nodes but he said radiotherapy will look after them. Thats why im thinking is there a possibilty they will do radio first. He said I could go back on tamoxifen if I wanted while recovering from surgery. So I did.
I wasnt actually told in the meeting that it is Pleomorphic, but he gave me a copy of the lab results from surgery to bring home to read, and its confirmed on that !!! Told me not to worry if i read the report and not to be on google basically 
.
I tend to prepare myself for the worse and anything less is a bonus then. I did read that pleomorphic might respond better to chemo than classic lobular so im holding on to that thought. I am alot more positive than I ever thought I would be in this situation. I wonder how many lobular ladies just dont get told its Pleomorphic type that they have!
1 Like
Hi @want2beme
Yes sounds like they are taking precautions by giving tamoxifen and radiotherapy first. That’s good. I would like the other breast removed as I’m pretty sure my lobular was missed at a recall to the breast clinic the year before my diagnosis so I want to be sure but not sure how to get around my surgeon.
Yes my oncologist said pleomorphic more reactive to chemo and as it behaves like high grade and more aggressively it should also be targeted by chemo. So like you I’ve been focusing on that. Also as mine is the highest hormone positive you can get hoping the letrazol gets that and the Ribociclib gets the pleomorphic.
I am usually a bit glass empty but have surprised myself on how positive I am so that’s good.
I was told at my meeting it was pleomorphic but told not to think about that or google it either! Haha! I’ve met someone who was told it was lobular and didn’t find out it was pleomorphic until after her active treatment. They should tell us. I am the type of person who likes the details - helps me understand why they are doing things.
I hope you get your oncology appointment soon.
Sxx
1 Like
Hi @Sharync
Thats great with the positivity, long may it continue.
I actually got a phone call this morning to go for medical oncology appointment tomorrow! So now I have both appoinments this week. At least I will know whats happening. Would u have had both of those appointments close together?
I do like to be in the know too, so I can do my own research and find the positives.
Have u had a breast MRI before? Maybe u could push for that for future testing rather than mammogram.
S
1 Like
Good news regarding oncology appt. I was just speaking to my oncologist this morning and she said I would have a 6 week break after chemo before radiotherapy?!? Long time I thought? But she said I’d had an intense chemo regime and needed to recover. So she’s going to get the radiologist to arrange an appointment to discuss the planning etc soon.
I had an MRI on both breasts at the start of this so that was good. I then mentioned to my surgeon about yearly MRIs and she was pretty annoyed to be honest. Said that there is no evidence that this is necessary etc etc. so I may pay for a private one! She was very adamant about that. Lobular is so different though!
Sx
1 Like
Ok panic over. Just putting this here in case anyone reads this thread in the months and years ahead. Ive had 2 meetings this week, Oncolgy and radiotherapy. Im having all my chemo first and then a 4 week break before 3 weeks of radiotherapy.
Thats that sorted. The guessing and not knowing is the worse feeling.
1 Like
That’s all good news. Hope you start the chemo soon
Sxx