I am just wondering if anyone has had a spread of cancer in other breast after a DX of lobular cancer.
I had a mastectomy Dec2005. When i read about lobular cancer it made me panicky. As their is an increased risk of it occuring in other breast.
I am seeing my surgeon in Sept will have to decide about further mastectomy but having second thoughts about it.
My BRACA 1 and 2 results are negative. Delighted about this as i have 3 daughters and also made me less convinced about the mastectomy.
Rx
Hi Liverbird
I hope things are well with you.
As I am a lobular lady with lymph gland involvement I too would like to know about this. I have asked BCC several times for a separate lobular category but so far no luck. I feel a separate category would make it easier for us lobular ladies to find out information like this.
Regards.
Jeannie
I too have had lobular cancer. Dx Dec 06, WLe, rads and tamoxifen (no lymph involvement). I asked consultant about spread to other side he said that not to worry too much as still only marginally higher than ductal and they would be keeping a close eye on both sides for the next few years. All along I have put my trust in consultant and onc and continue to do so as they have so much experience to go on - I have only me and what I have read! So for now will keep going for my checks. I have 2 daughters (11 and 15) who I really worry about but don’t think it is hereditary.
Hope everything goes well for you.
Shorty xx
Me too with lobular and lymph node involvement on left side, diagnosed 3 weeks ago. I had a CT scan last Tuesday and the team meets tomorrow to discuss my treatment.
In those 3 weeks I have started to swell up under my left arm and also my right arm.
I have 10 months history of pain below right shoulder blade and shooting pains down right arm . Could this be a tumour as well or could it be a sign that it is already spreading to my other breast? Head pretty much screwed up at the moment.
Can events happen that quickly?
Hi Ruftikins
Hope you read this i was going to private message you and will do if you like with my email address.
How i feel for you, but try not to panic too much love.
When i was diagnosed i imagined the cancer was everywhere but it wasnt. I thought i had a spread already like you fear as i had had pain in ribs lower back and was a complete wreck.
I was screwed up for a long long time as i had known so many relatives and friends who had unfortunately not done well with BC.
Some folk on this site helped me tremendously.
I am 2 years this Oct since DX, its still hard kid but i am still here and trying to believe i wil be around for a long time.
Let us know what the oncology team decide and if its chemo dont panic you will get through it.
Big Hug
Ruthx
Hi Rx,
I was diagnosed with lobular cancer and DCIS in my right breast in July 06 after a lumpectomy, had a wle but the surgeon said they had no clear margins (luckily no lymph node involvement) so said I would need a mastectomy and strongly suggested I have the left breast removed at the same time because of the higher risk with lobular cancer developing the other breast. I was devastated but i do consider myself lucky in that i didn’t need chemo or rads.
Here I am now 9 weeks post bilateral reconstruction using the skin and muscle from the back and well happy with the results.
I am also BRACA 1 and 2 negative - I have a 15 year old daughter so very pleased with this result too.
Take care
Stay positive
Karen
xxxx
Hi all on this thread,
You might have read it elsewhere but life has been a bit rough for the past week for me!
As you know I was worrying that lobular could have passed over to my right breast…well no, that would have been too easy!!
I have 2 tumours on my spine and rib involvement. The pain that I felt ,waiting 3 weeks for my CT scan result, must have been the ribs starting up. Good old NHS eh!
My poor old leftie will have to wait a while for attention as there are more PRESSING needs elsewhere!
Thoughts for you all, Ruftikins
Just realised that the comment about passing to right breast was very unfeeling when other people on the thread are worried about it. I am very sorry…tooo much going on in my head is my only excuse.
xxxxx
Dear Ruftikins
you must be devastated. I am so sorry
Mole
Oh Ruftikins I feel so bloomin awful for being so positive and hoping you would be ok.
Please accept my apologies.
I just dont know what to say sending you a massive hug. I do hope the treatment they can give you keeps this ‘bugger’ disease at bay.
Love Ruthx
Hi all
Ruftikins I’m so sorry to hear your news - I sincerely hope your treatment helps sort you out. Keep us posted won’t you?
I too am a lobby lady and find all the conflicting information confusing.
When they took my tumour out during my WLE they found another smaller one there (both with clear margins) and I’ve since read in my notes (although the consultant hasn’t told me) that the 2nd one is DCIS - I’m confused, how I can have 2 different types of cancer in one breast? Like you kaz42 - do you know about this? How does that affect my treatment? Surely they don’t both respond the same to treatment (I’m having FEC, rads or mastectomy & tamoxifen)?
My surgeon has suggested a mastectomy as it’s multi-focal. He doesn’t seem to know what the ‘cure’ rates are of rads vs mastec are but I know it’s still possible for recurrence on a scar line. Does anyone know what the stats might be? He initially said 0.5% a yr recur chance for mast and 1% for rads. Then that seemed to change to 0.7% so I assume they don’t really know.
Has anyone else made this decision based on any information or is it just personal choice at the end of the day? I’m 34 so not ready to lose by breast yet if I don’t have to. Plus, the reconstruct looks horrendous- is it as bad as it looks?
Hope someone can help.
Love to you all
xxx
I am so touched by your kind comments. It was only a week ago that I found this site but all of you (and my husband) are keeping me so upbeat that I am keeping cheerful. Have to wait to see what onc says on Thursday.
Getting back to original thread…I have a 32 yrs daughter and it has only just occurred to me that she could be tested or I could for this BRAC thingy. Can anyone tell me more about it?. I did hear about genetic testing for inherited breast cancer about 7 years ago but it was something you paid for yourself. Has the NHS improved or is it still the dinosaur we love to hate?
Thoughts Ruftikins xxx
I was DX ILC DEC 05- 6x A&C followed by a mast July 05 and rads Oct/Nov 06 (yes a 12 WEEK WAIT) I gave it a lot of thought and decided on a prophylactic mast May last year on the healthy side with tissue expanders in both .I was pumping up last summer and had my exchange last Dec. I am glad I chose to do it but it has to be your choice, I certainly didn’t rush into it. Do your research and talk to the professionals, I found my Mcmillan nurse to be worth her weight in gold.
Rosemary
PS - Ruftikins, So sorry to hear your news I am sending you a big [[[HUG]]] too. I was tested last Sept at GUYS and found out this April that I do not carry the BRACA1 or 2. I had already gone ahead with my op in the May but I needed to know for my sister and Daughters sakes. I have 3 family members on my paternal side who had breast cancer so it was important to find out. Talk to your breast care nurse, I did a family tree which she faxed to Guys and I later went for my counselling along with sis and daughter.
MY post above this one is in reply to mammabee xx
bumping up!
hi there - i feel for you ruftikins, but i hope that things settle into some semblence of normality soon. Three weeks ago I saw my GP and joined the rollercoater ride (never did like rollercoasters), dx with lobular and inflammatory BC on 3rd August, spent this week exploring the X Ray department with bone scan and CT scan - MRI when they have a spare slot - along with the mammogram and core biopsy i feel well and truly prodded and poked. Very kindly they are creating new colour schemes in various places with bruises between the bright purple to that horrid greeny yellow colour. Thankfully just me and the cat get to see them. I see the surgeon again friday, hopefully we’ll be able to plan the mastectomy and get moving towards the day he tells me never to darken his door again!!!
So I think you and I will be on a similar ride - keep your spirits up.
ruth
BTW i second the request for a category for we liscious lobby’s
Quite fancy being a liscious lobby!
I am left handed so already a member of a minority group.
This week has been horrible following Rx on spine. Having to come to terms with being disabled as well . The nerves in my hips are causing havoc. The worst thing is knowing my lump is still in there pulsating away…cant wait to get rid.
I think I have made a big mistake telling my daughter about BRCA testing.She has a 3 month old she is breastfeeding and so lots of hormones floating around. She hasn’t spoken to me since I told her. Makes it even harder to cope with my life.
Do we both have to be tested for the genes?
I feel like the worst parent on Earth.
Ruth, we do seem to be parallel. Hope your tests go ok.
Thoughts Ruftikins
Hi there Ruftikins,
so hope the pain in your hips eases. Funny how lives just flip upside down like this.
I was sad to hear about your daughter not speaking, but she had to know. If you hadn’t told her and she’d found out from someone else - that would’ve been worse. It’s not your parenting, just the BC arriving at the worst possible time.
My older daughter hasn’t said a word either. Five months ago we buried her beloved Grandad and I think it’s all too much for her. I’m giving her and her boyfriend some space to work it through.
My thoughts are with you - and my sister always says that lefties are the only people in their right minds!
Ruth
Hi everyone
I am also lobular lady with WLE and rads finished in June (right boob). Consultant did point out can occur in other breast but said they will be checking this at my next mammo in January.Sorry if I sound a dimwit but no one mentioned clear margins to me at all during my treatment - what are clear margins please??
Lorraine