Hi I had a lumpectomy & bi lateral breast reduction on the 14th August 2024 as I was diagnosed with grade 2 invasive ductal ER/PR Positive & HER2 negative. I had my post op appointment 3 weeks after surgery & the oncologist & team were really positive as 25mm tumour was removed with good clear margins. No lymph node involvement. & really happy with how I was healing. I felt really positive but then the letter came through my door from this appointment & it said LVI positive. No mention of this before so I googled & felt like I had been diagnosed all over again. I am waiting for my oncotype results to still come back. Wondering if anyone else has had LVI & what their understanding of it or treatment plan was? Thankyou x
there has been a lot of us over the years LVi positive, if you start googling you go , I was told not to worry about it so I didn’t and trusted the chemo to zap stuff, maybe naive but it was how I personally dealt with it. I’m sure others will pop on and also ring the number and speak to a nurse we’ve got you Shi xx
Thankyou for your reply. It’s just scary when you see it on your histology report & it hasn’t been mentioned before. I just wanted to see how common it was & what other people’s understanding regarding prognosis etc was & what treatment plans they had been given. Take care xx
I was tnbc I had operation then 3 fec, 2 docetaxol then 1 more fec then 15 rads +5 boosters. Your treatment plan will be tailored specifically to you. Everyone’s is tailored soto them try and take it a treatment at a time, and reward yourself after each treatment even if it’s a lippy or something little treats along the way helped me, you do it your way Shi xx
At my surgery results appointment they told me I had vascular invasion. It was in any case a high risk cancer (grade 3 TNBC) but I had clear margins and no lymph node involvement. Chemo was recommended but I think that would have been the case anyway given my grade and type. A few months later I discovered I had a secondary lesion in my liver. Still no lymph nodes involved so the assumption was cancer cells in my blood stream. This is my story and won’t necessarily be yours, but I came away from it feeling it’s a risk they don’t focus on and maybe they should offer scans to people with LVI, as they would if you had positive lymph nodes. I was lucky that the spread was discovered early, even if it was found by accident when I was being scanned for something else.
LVI is a tricky thing mostly because they know it matters but not exactly how in each and every person. For example, people with grade 3 tumors? It doesn’t seem to matter prognosis wise and they’re assuming it’s because the vast majority of grade 3 patients get chemo. But they can’t say for sure. So in saying that, just trust the treatment. It’s a great equalizer.
I too was LVI positive. I only really found out when someone rang to say I couldn’t be considered for an upcoming clinical trail Id volunteered for due to being LVI.I looked again and yes the LVI box was ticked.
I was extremely worried and upset that this hadn’t been mentioned at my results appointment. I googled and went down a huge rabbit hole . I eventually got in touch with my BCN who although couldn’t explain everything right away said not to worry as if it had been important the consultant would have mentioned it. What I didn’t say but feel I should have is EVERYTHING is important to us. I eventually had it explained that it was the tumor itself that was involved due to its type , that there were good margins and no Lymph Nodes involvement so nothing to worry about.
I still wonder why if there is nothing to worry about why was I turned down for the trail.
I am however 3 years post op and still cancer free so I’m happy. I hope you can get the answers you need. All the best
Thankyou so much for your reply. Yes I also went into a deep rabbit hole. Like you say everything is important to us. It’s so nice to read that you are still doing well.
What type of cancer was you diagnosed with & what treatment did you have if you don’t mind me asking? I just wondered if having LVI meant different treatment options. Take care x
Hi, so sorry for the delayed reply. I had Invasive Ductal , Hormone positive Her Negative Cancer with a Papillary type tumour. It was caught early so I had a lumpectemy and radiotherapy. No Chemo needed. For which I was very very grateful. I’m on Exemestane for for 2 more year’s. It’s been a rough ride at times but I’m lucky to have wonderful support from my family and a very good friend. I wish you all the best. Take good care ok. .
I can relate to that feeling of uneasiness when I too only inadvertently found out later in a letter that my histopathology indicated LVI in it. Similar to you it wasn’t mentioned during the results appointments; i.e. like the rest of the tumour profile which was Grade 2, ER+, PR+, HER-. I was diagnosed in December 22, and my active treatment, which completed last year consisted of a single mastectomy with clear margins, SLNB (1 of 4 nodes +), followed ChestAbdoThorax CT scan, and then axillary dissection surgery which I opted to have but no further lymph nodes were identified as +. I didn’t have Chemotherapy as it wasn’t deemed beneficial (i.e. risk/reward) based on my OncoType test score. I then opted to have chest wall radiotherapy after weighing the pathology risk factors. As I am detail oriented I reviewed my pathology report with a pathologist and asked my oncologist what the implications of LVI and PI were for my treatment plan (none). I went for a second opinion before making the decision on radiotherapy as I felt I was being under treated at the time because neither chemotherapy or radiotherapy were being recommended and I had an intermediate risk of recurrence based on individual pathology. I gathered the information/understanding I needed about LVI and PI and have put them to rest as much as possible now 20 months on from initial diagnosis. For me it was very much a personal process I needed which not many around me understood. My ongoing monitoring consists of an annual mammogram and a bi-annual chest CT for the first 2 years due to an observation noted in my initial CT.
I’m still working through my ongoing endocrine treatment plan side effects, but other than that still no signs of a recurrence to the present day. As you can probably tell from the experiences on this forum, your treatment plan will be personalised to you, even though it may sound like your pathology is similar to another even with LVI, so try not to compare too much. I think the OncoType test result day will be your next decision point, wishing you well. Take care.
Thankyou for sharing your diagnosis/ treatment plan with me, it’s very overwhelming trying to process all of what is happening. I am so pleased that you have had such positive results from your treatment & are still well & going in the right direction. All the best for your future. Take care x
Thankyou for sharing your diagnosis/treatment plan with me. I’m so glad you have a good support network around you, I am also lucky enough to have a great support network & that makes a big difference to have people to talk to & go to appointments with. All the best for your future x