Hi all, went for my results yesterday after a re excision on my left breast for lobular was told my margins were still not as clear as they usually like at 2mm,i think they said but rather then go for a third re excision that they would treat it with a boost of radiotherapy this I accept I’m grade 2 by the way,but I also have idc in my right breast grade 3 which I got clear margins after first op but 1 node out of four was affected and I then developed an infection resulting in my wound bursting open which is still partially open after debridement and still getting packed and dressed every couple of days,my worry is they discussed chemo as a treatment option and have come back and said the risks outweigh the benefit, he actually said chemo would kill me! As I have lung disease also,he has now put me on tamoxifen and I’m waiting for an appointment to see the treatment team to discuss radiotherapy,he said they might decide to treat my left side first as they cant do my right until my wound has healed, what’s worrying me is the wait and is my outlook going to be worse without chemo? I feel sick with worry that I’m not going to beat this. Anyone got any advice reassurance that may be of help please. It just seems everything is going so slow for me I was diagnosed 1/6/16 had my first op 1/7/16. Thanks. Xx
Everything I’ve read about lobular says that radiation is and effective treatment. In fact, yesterday my breast surgeon said chemo isn’t very effective with lobular. I don’t understand that statement really, but that was exactly what she said.
You certainly wouldn’t want chemo with an acitve infection. Tamoxifen should keep everything in check though while you wait for the wound to heal.
Thanks Stacey for replying,I’ve been reading your threads and it really puts things into perspective we are all going through the same thing with bc,but for some like you dealing with a loss of a loved one is doubly hard.i send big hugs and hope your treatment goes well and take extra care of yourself. Xx
Hi charys, thank you for your reply it really does help knowing other people have or are going through similar things,I’m already eased in my mind now that chemo is not the only solution for cancer, I feel better that ive actually started tamoxifen today so I know treatment is now under way and feeling more relaxed about it all,just hope I don’t suffer too many side effects on the tamoxifen! Xx
Hi livvy,
It must be such a confusing picture for you at the moment and your additional underlying health issues may make things a bit more challenging.
I was diagnosed with a lobular cancer in January this year and am currently just post FEC chemotherapy number 5 after my operation in March. Whether chemotherapy is a relevant and/or effective treatment will depend much on type, size, stage and grade of the lobular cancer.
Your oncologist is wise - until all of your wounds are healed, chemotherapy is not a good option for you.
I am fit and healthy, but need additional injections to be able to fight of infections and the cumulative effect of chemotherapy on ones body is truly challenging. From fit and healthy I have gone to breathless, palpitations, compromised immune system, burnt out chemo veins, etc., etc. and nearly permanently ‘tied’ to the sofa - and I have one more to go!
Radiotherapy in conjunction of tamoxifen should ensure nothing untowards happens, until your body has recovered to possibly consider further treatments. Being a grade 2 with the lobular will also help, rather than me - I was a grade 3.
This is a time to trust your treatment team - they do have the best possible outcome for you in the forefront of everything they do and decide. It is hard to trust others, whom we do not know - and with a diagnosis we may not completely understand - but this trust is now very important.
This really is a case of one step at a time, as and when it needs to be taken. You and your body are at the centre of all of this - give your body time to heal - be kind to it - do everything you can to make it strong, even if it takes time. And then take whichever step is the right one to take for you to get better and feel more comfortable about he kind of treatments, which are right for you.
We are here to help and support as much as we can.
If all breaks - you may wish to call the helpline 0808 800 6000 - as most of us on this forum are non-medical people, just sharing our gained knowledge and experience. And there also is this forum, which you may find of help forum.breastcancercare.org.uk/t5/Ask-Our-Nurses/ct-p/Asknurses
My thoughts are with you - let us know how you get on.
Huge Hug
Sue xxx
Thank you so much sue, I really appreciate your thoughts,I’m usually such a positive person but this cancer has got the better of me at times with all the not knowing and ifs and buts, I know in my level head my Dr was right theres absolutely no way id get through chemo! I suffer from terrible chest infections in winter that wipe me out for weeks! It seems funny even taken that one tablet today eased my mind a little knowing that something is been done to fight this horrible disease! I hope your final chemo is kinder too you. and you feel better in yourself soon. I will keep you updated I’m so thankful for this forum I don’t know how I would of coped without it! Take care . Xx
Hi Livvy. As you know from our conversation on your first thread that ive had chemo with an ooen wound. Thete have been compromises, I’ve gone from FEC-T (6 in total) to 4 FEC and the dise of epirubicin was decreased by 10% after the first round. My oncologist said the same to me at the beginning, her words, I quote, “if I was to give you chemo today I’d kill you”. However by 12 weeks my wound was healed enough to start. It has not been plain sailing, however I do not have any other health issues. If you do feel you still want to have all treatment possible talk to your oncologist about reduced doses or different tyoes of chemo. However, it’s easy for me to say now I’m glad I pushed it was definitely not an easy journey. Tamoxifen and/or other hormone treatments have very good results. I dont know your menopausal status but if you’re post menopausal you coukd ask for zoledronic acid. This has been shown to help prevent bone secondaries and is given one infusion every six months for 2 years. Xxx
Thanks botty boo for your advice I will certainly ask when I see the treatment team,my last appointment was with the surgeon and I totally messed it up I had a complete melt down as soon as I walked through the door! God knows why! So I didn’t get the opportunity to ask what I wanted too. I am post menopausal so any little thing they could do might help! I do remember the surgeon saying that the treatment team could change there mind about chemo if my wound had healed well enough by the time I get to them because I’m sure he said I would have to come of the tamoxifen for a while if they did. But that could be me imagining things or I’ve got it completely wrong lol! Which I seem to be doing alot lately!? hope your keeping as well as can be expected under the circumstances! Xx
*pre menopausal * that should say! See what I mean I just talk rubbish lol. Xx
Lol it’s the diagnosis it mushes our brains. I had to come off the anastrazole (they give this followed by tamoxifen in post menopausal ladies sometimes). Good luck keep me up to date xxx
Hi everyone,
Just an update,well after a disastrous few weeks with infections and plenty of tears and tantrums,chemo is going ahead! Seen my oncologist again this week and was shocked to discover I should have had my first chemo 2 weeks ago! I don’t know who was more angry me or him? , seems I had been forgotten about?,so now its all systems go I’ve had my picc line fitted ready for chemo on Monday! So fingers crossed the side effects aren’t going to be as bad as I expect them to be.here’s hoping anyhow.Xx