Lobular cancer 5 years on
Lobular cancer 5 years on I have just reached 5 years from diagnosis with mutifocal lobular cancer treated with mastectomy and tamoxifen then anastrozole. I have just been switched from annual mammograms to 3 yearly NHS breast screening programme checks. I am worried because of the much increased risk of cancer in the other breast after lobular cancer. I will be stopping anastrozole shortly too.
What follow up are other people having at this stage?
Celebrating being alive and trying to make sure that I stay this way!!
CKx
Always lovely to have postings like yours as i am lobular only about 20 months on but you have done well to have reached the 5yr mark.
I know what you mean about worry over the other boob, i dont trust mamograms but they are all they offer. I am seeing surgeon in Sept about having other breast off but its strange the further i get from the DX and the more healthy i feel the less i want the further surgery.
Hope someone can help you re - mammograms and treatment after 5 yrs.
Ruthx
I don’t have any advice - just wanted to say congratulations on reaching the 5 year mark.
Lola x
Thanks for posting - Its good to hear good news.
I had lobular (and ductal) invasive cancer and so glad to hear you have been ok 5 years on - I am only 7 months post diagnosis and do worry about my other breast especially as I have always had lumpy breasts - how do I or they know when the lumps are anything to worry about - they only diagnosed by cancer when a lump had grown to 2cm after being present for about 3 years and after 2nd referral in 3 years.
Congratulations on completing the treatment and enjoy your life,
Chloe x
Lobular cancer - just beginning treatment Hi All
I have lobular BC also. Havent had my mastectomy yet - due end of August after FEC finished. I am extremely worried about other breast. Same lines as you all - how will I know its there before it gets big (as the one in my right breast did).
How do you ask about having the other breast removed ?
Also interested to know what follow ups people are having. Dont know what mine will be yet.
Take care
Jane
For Jane Hi,
I’m just coming upto 3 years since my lobular diagnosis. Follow up varies a lot. Probably depending on individual circumstances. For about the first 12 months after surgery and treatment I was seen every 3 months by the surgeon I think probably because I had immediate reconstruction. This then went to every 6 months and still is now. I’m not sure when they will be spaced at 12 monthly intervals. I see my oncologist once every 12 months and have done since I finished chemo. I get a mammogram every year. I did mention once if I should be getting an m.r.i. they just looked at me as if I was mad.
I am on Tamoxifen as I was pre-menopausal when diagnosed. I will continue with this for 5 years unless it causes me problems or I have a recurrance. After the 5 years I have been told I will go on to Letrozole (femara) I think for 2 - 3 years.
My onc. did say that during the seventies and early eighties almost all who were diagnosed with lobular b.c. automatically had preventative mastectomy on the unaffected side. Apparantly that’s now seen to be to drastic. Having said that I think you should discuss it with your medical team as they may have a different opinion.
Although I have set routine appointments both my consultants always emphasise that they will see me anytime I am worried at all.
Good luck and I hope you are not finding the chemo too unbearable especially as you have such young children. Certainly not the way you expected to be spending your maternity leave I know!
Best wishes
Kim
Kim and Catkin Hi Kim
Many thanks for your message.and Catkin for openly airing your concerns. Gives me a good perspective on how life might carry on afterwards. At the moment this is what I am focussing on - possibly not giving the doctors chance to keep up with me ! But I know they will be there, they are just focussing on the now.
As you say maternity leave hasnt quite been as planned, so I am really looking forward to next summer on the beach. On the bright side it hasnt all been bad, when I am well with the chemo I have lovely lazy days with the baby, she is really good, and play with her alot. I also seem to have more patience for my little boy and play with him a lot more when I am well - which has been a lot of the time.
Seeing the messages about lobular cancer here has helped me alot…
My tumour was estimated at 8 cm and multifocal and it was the lymph node that took me to the doctors. So I was very worried as to what size one could get to in the other breast before I`d go to the Doctors again. I know it was masked by pregnancy - but rational thinking doesnt always kick in ! My oncologist asured me yesterday that they will keep a close eye on the left breast and we can talk about treatments etc after the surgery. In the meantime the 8 cm has respinded to the chemoptherapy by more than a 50% reduction so we are all delighted.
Tke care
Jane
Thanks all Dear All
Thank you for your replies and shared thoughts. Jane I am so pleased to hear that your tumour is melting with chemo-that is really encouraging. You asked ‘How do you ask about having the other breast removed ?’. When I was diagnosed I was offered prophylactic mastectomy on the other side but after alot of agonising I decided against this. I hear that currently the specialists are less likely to promote this but you can just ask what they think when you next see them.
I wish you lots of lovely good relaxing days with your little ones between chemo sessions. Have they got a date planned for your mastectomy?
love CKx
Mastectomy Hi Catkin
Just got a date today of 14th August. 2.5 weeks after last chemo. I feel relieved to have something to work towards.
After diagnosis I had an MRI of the other breast to ensure nothing was there. After this a bi-lateral mastectomy was dissmissed. At the time I was relieved. But as youve gathered a lot of time to think sets you off again. One thing I am realising largely from the postings and advice which I can now take in is that there isnt a need to panic. The initial diagnosis is a roller coaster. But now, as you say theres time to ask what specialists think and to be more balanced. My initial panic that anything would have to be done at the same time as the initial mastectomy is diminishing. Have next consultation beginning of August so will ask then what they think about ia left mastectomy as a future option.
Wish the weather would pick up for the weekend - picnic is planned but I dont hold out much hope
Take care
Jane
Hi Catkin
I was diagnosed with lobular cancer and dcis in my right breast in July 06 after having a lump removed, I then had a wle but unfortunately there were no clear margins. My surgeon stated for the best possible outcome I should have a bilateral mastectomy as I was higher risk of getting lobular cancer in the left breast. My world fell apart I was absolutely gutted, I wasn’t allowed immediate recon as at this stage they were unsure if I would need chemo or rads.
I had the mastectomy in Aug 06, luckily I didn’t need chemo or rads just tamoxifen for 5 years and a monthly injection in the tummy for 2 years.
So here I am now 4 weeks post op reconstruction using the ld method and I am really pleased with the results.
Hope everything stays good for you
Take care
Kaz xxx
For Staffy - Letrozole Hi Staffy
I’ve been reading the lobular postings with interest as I was diagnosed with lobular in my left breast in November 05 (aged 33). I had a mastecomy with immediate reconstruction, Epi, CMF and radiotherapy before starting on Tamoxifen but now on Nolvadex.
I’m not lucky enough to have any children of my own yet and having been told that the chances of it coming back are “high”, I decided to stay on the Nolvadex for 5 years, although I had originally wanted to come off after 12 months to try for a baby.
After reading your posting where you say you are on Letrozole for another 2 years after your 5 years of Tamoxifen, I’m wondering if it will be the same for me too meaning a further 2 years I can’t try for a baby and to put it simply I’m not getting any younger!
Is your story the same as mine?
Thanks.
Skippy
For Skippy Hi,
I am a qite a bit older than you. I was diagnosed just before my 43rd birthday and am now 45. My children were both teenagers when I was diagnosed. So I don’t have the same issues there. I have to say my heart go’s out to you girls who are having to deal with this disease at such a young age and gives you so many other worries.
Letrozole can only be used when post - menopausal. The chemo stopped my periods and as yet have never come back. My onc. said they are very unlikely to now and looking at my blood test results I am almost post-menopausal. I think this is fairly common when women in their 40’s have chemo. because we are nearer to our natural menopause.
I’m sure my oncologist did’nt suggest I go onto Letrozole after the 5 years of Tamoxifen because the cancer was lobular it was suggested because I will be post-menopausal by then and recent studies have shown that it just might reduce the risk of recurrance further than the 5 years of Tamoifen alone in some circumstances. Well at least that’s how I understood it.
I hope this has helped a little. Talk to your oncologist about it. Let him know how important it is for you to be able to consider starting a family.
For what it’s worth I think you did the right thing by deciding to take the Nolvadex for the 5 years. At the end of it and god willing you don’t get a reccurance you will still be under 40 and I very much hope you get that baby you so want.
Best wishes
Kimx
Thanks Staffy Hi Staffy
Thanks for replying to my posting.
One thing is that I don’t have any further appointments with my Oncologist, only my breast surgeon. I’m seeing him in a few weeks so will ask him what if anything they have planned for me after the 5 years.
Take care.
Skippy