Hi from the UK

[Mistydeb01]

I’ve recently been diagnosed with Lobular BC in the right side, will be going for lumpectomy & node removal next week.

I’m here to learn more about LBC and what to watch for in the future, plus make sure my cancer team are ‘on the ball’ with up to date lobular treatments etc. They’ve already told me it’s sneaky and not all scans will show everything, yesterday he even admitted that he doesn’t fully trust what a scan is telling him with a dx of lobular…we’ll see how that works out in practice when it comes to treatment down the line. He does seem to be vigilant, he asked about a neck MRI with contrast I had in 2021, which was for a swelling above my left side collarbone near the neck (opposite side to LBC found), he just said mmm, I’ll add it to your clinic notes. Not sure if he thinks it’s related or not, but certainly something worth remembering.

Wishing everyone all the very best.

Debbie

[ba5083]

Something to consider, if available, is to have a FES PET scan. Due to the nature of how lobular hides on scans this can be a very useful scan but is relatively new. Here is a link to a video I recently watched regarding this scan and how it might help, particularly with lobular, to get a more complete picture. It is quite lengthy over an hour long. youtu.be/XdlxZrR1Ph4(Not working as expected?)

Another resource that might help is the LBCA (lobular breast cancer alliance) lobularbreastcancer.org/

[Mistydeb01 in reply to ba5083]

Thank you, I’ll Google it and see how available it is in the UK

[Claireperth]

I have a tumour near my neck on the right shoulder. Unfortunately it’s pressing down on the nerves and nodes and I now have a huge swollen arm with little arm or finger movements! I am on a drug trial that seems to be stopping the tumour from getting larger but the drug isn’t strong enough to reduce the tumour. I am right handed so the last six months have been hell. Luckily I have a husband who makes all my meals etc.. On the bright side I can still vacuum the floors 😵‍💫😊

[Mistydeb01 in reply to Claireperth]

😢 about the tumour and the vacuuming. I hope they can find something to reduce that tumour, so you can get some functionality in the arm. I broke my right collarbone years ago and it was a pain in the butt to not be able to use your dominant arm for weeks, I can’t imagine what it must be like to lose it for months.

Now I know about how sneaky this cancer is, I hope mine was nothing more than a virus

All the best

Debbie

[Ntash01 in reply to Claireperth]

Hi Claireperth

I’ve have a huge swollen right arm… looks like I’ve been lifting weights! Dr immediately ordered ultrasound scan and discovered a blot clot… I’m now on blood thinners - I’m having to inject my stomach everyday for 4 weeks, after that i can be given the pill version of blood thinners. Just thought I’d mention this to you as clots are no good!!!!

I see this post is slightly old(ish) and I hope things are better - but just wanted to highlight my issue. I do hope you have managed to get a little shrinkage and relief!

N

[Nocillo]

I’ve got lobular and ductal. The lobular tends to favor the digestive tract I was told, but apparently can show up anywhere. My initial diagnosis was in 2015 with Mets to the bone. I’m assuming that was the ductal, although no one specifically told me that. In the fall of 2020 I had lost 17 lbs without trying (thought it was a miracle!). In January of 2021, I began vomiting everything I ate. My onc didn’t think anything about it and turned me over to my family doctor. I was so weak I couldn’t get out of bed. Finally I insisted something must be done. Had an endoscopy and my stomach lining was covered in small, red tumors. Lobular. Started on Ibrance and within weeks my stomach looked brand new. I needed 2 blood transfusions because I lost so much blood in my stool. Lost 45 lbs. overall. Which I have now gained back, sadly. Anyway, keep alert to changes in your body, weight, appetite etc. If you think something is strange, INSIST on getting it looked at! We must be our own advocates!!! This is vital. The doctors are busy and they aren’t going through what we are. After 2 years on Ibrance now, I just had an endoscopy and colonoscopy and no sign of trouble. Knock on wood! Good luck with your treatment and decisions.

[Mistydeb01 in reply to Nocillo]

Thank you for replying, from what I’ve read so far, lobular does seem to like to met. Maybe because it’s already been there a while before it’s found. Thankfully, there does seem to be some good treatment options, where people have some success

🤞mine is just in the breast.

Good luck & all the very best

[Eliactida1955]

hey UK !!! That might explain about the scans because they are different all the time with me. I’m going again on April 3 just had a pet scan in January not much change except small foci on the liver and he will do a full body c t and a Neculear bone scan . We will see and please let me know what he tells you. Right now treatment is just fulvesterant but he’s supposed to add a med after visit. Stay strong and I wish you the best🙏✝️🌹

[Mistydeb01 in reply to Eliactida1955]

good luck with your results. If I remember I will let you know 🤣.

All the best 🙂

[Eliactida1955 in reply to Mistydeb01]

thanks

[Music1]

Hey Mistydeb how are you doing?I'm also UK and lobular right side. Was diagnosed maybe a month ago or possibly a little more but they've wanted to do an MRI which took 2 weeks and then the wait was an additional 2 weeks etc. I'm booked for single mastectomy next Friday 23rd June. I haven't been given timings or anything. I was told I would need to travel the day before to get this radiation dye put into my shoulder so hopefully the following day it will show my lymph nodes for a sentinel biopsy? I've been told by others it's a waste of time as it only stays in your system working for 6-7 hours to work for surgery. Mine will be more like 12 hours so I'm not sure I see the point. My LB didn't show on an MRI but as it was physically obviously and big enough to touch at 7cm they did an ultrasound scan and biopsy. How are you doing now. Have you had any surgery? Side effects etc

[Mistydeb01 in reply to Music1]

hi, I replied to your DM, mmm you might be right about the dye, they did mine about 2/3 hours before the op. If they do it at the time of op the surgeon has to massage your boob for 5 mins to get it to move through…obviously they would prefer not to do that. Mine showed at 2.1cms on MRI with contrast, but not on ultrasound and the mammogram picked up the calcification and they were able to biopsy it from there under mammogram conditions…. that was weird. Although everyone said it looked like a cyst on mammo, but consultant said it didn’t look or feel like a cyst. I had a visual of the skin puckering inwards when I lifted my arm.

Surgery went well and it’s all healed well, no problems with that and scar is good. Pleased with how surgery went.