Hi
Hope I haven’t offended or scared anyone. Everything was so advanced when I was diagnosed that I’ve lost a lot of my tact and common sense! Things had just been left to develop very very far with me before I was diagnosed- I realise how lucky I am to be responding to the therapy I’m on. I suppose I’m an example of someone getting on the treatment that suits me and that’s what I wish for anyone with this disease. If any of you know of anyone who has had a similar experience to me that I could contact, can you let me know. I have a strange mind-set these days and probably shouldn’t terrorise everyone with my tale! Anne x
Has anyone had the other breast removed as a precaution as well. Given a 10% recurrence in other breast with lobular. I am lobular and currently receiving treatment. Had 4 FEC & 1 TAX & another 3 TAX to go. Then Herceptin and Arimidex. But the thought of going through all this again should it come back in the other breast is scaring me silly. I also had a clear mammo 15 months before I saw inverted nipple. Was told things can progress quickly!
Hi,
I’m in the middle of sorting out removal of my “good” side and hope to have surgery this autumn. I have discussed it with my new consultant at the Marsden (having been in Norwich, but now living in London) and she fully supports my decision - based on my cancer being lobular with extensive pleomorphic LCIS which is practically impossible to detect with mammograms or MRIs. Another reason is my partner (husband from tomorrow!|) lost his first wife to secondary BC and I don’t want to have to put him and his children through that again - it was bad enough for him when I was diagnosed last year. Also, of course, I’m doing for myself and my children too.
I am being referred to Elaine Sassoon as she did my first mast and recon so think it makes sense to have her do the next one.
Regards,
Sally xx
Hi Everyone
Anne, so pleased to here you are doing so well. Once I found out my cancer was also in soft tissue areas it really frightened me and initially thought chemo would start, but thankfully this little pill is doing its job and chemo is hopefully still along way off.
Sally, hope you have had a wonderful day and have a long, long, happy life together let us know how the op goes.
I only work 4 days now find thats enough, really tired at end of day. Though my dx was 20 months ago still have odd bad day when feel can’t cope. Had one yesterday at work, just burst into tears for no reason. Sometimes I think things build up, but smile now back on my face, well until Liverpool failed to beat Stoke today. Never mind Saturday night is bottle of wine night, cheers everyone.
Hello again girls!
I had my healthy breast removed almost a year after my Mastectomy. I had given it LOTS of thought and decided to take control. I have absolutely NO regrets but obviously its personal choice and possibly isn’t for everyone, I went armed with a long list to persuade my oncologist and he just said ’ very sensible’. Its good to read this thread and make contact with other Lobular Ladies.
Lynni {{{HUGS}}} a good cry helps sometimes and congratulations to SallyLou on your Wedding day.
AnneTh ~ Hello and no you didn’t!
Anne, no, not offended nor scared - in fact it’s good to hear of someone whose treatment is working well for them should I ever end up with secondaries. (Sorry if that sounds completely self-centred - I AM pleased for your sake too!)
I couldn’t agree more that the profile of lobular needs to be raised. I found a thickening at the beginning of last year and had a routing mammo in March. I was completely reassured when it came back clear - fortunately as I’d had bc before (in 1991) I got a bit twitchy when the thickening wasn’t going away so finally managed to see the breast clinic in November. Another clear mammogram, and a clear ultrasound, and they tried to tell me the thickening was just left over scarring from the previous surgery. Fortunately the surgeon agreed with me that it wouldn’t have just started in that case, so I had a biopsy.
Finally I understood how easy it is to get to a 4cm tumour without noticing it! Fortunately I seem to do lazy cancers so it hadn’t gone anywhere.
I’m currently pondering whether to have a mastectomy on the other side or whether I’m just too completely hospitalled out to have more surgery.
Enjoy the wine, Lynni - cheers
Lyn
Hi Anne, no you didn’t scare or offend me either. Really glad to hear you’re having a good response from the hormonal therapies and have not needed chemo so far…I think it’s good to have as many treatments in the bank as possible!
I know this might sound daft but I’m not so worried about another primary bc, I know I could do that again…my surgeon has always said I’m far more at risk of developing secondaries than I am of another primary, I think that’s why I didn’t push for another mastectomy.
I’m currently waiting for the results of a bone scan (done friday) as I’ve been having bad hip pain, especially at night. Apparently the x-ray was ok…hopefully all will be well but a part of me seems to think that it’s only a matter of time.
I hope this doesn’t sound melodramatic, I certainly don’t mean it to be, but I’m very realistic and know that secondaries are a very real possibility.
Sally - hope you had a lovely day.
Lynne - hope you enjoyed the wine.
Claire x
Hi,
Just wanted to say thanks to you all, for letting me join the ‘gang’! Like you, Lynne, I hope I can keep taking the little pills for ages yet!
Claire, I’ll keep my fingers crossed for you- I hope your concerns about finding a secondary will prove to be unfounded. Waiting for scan results never good, so hope you’re managing to do some nice things and give yourself some treats!!
All the best to you all
Anne x
Hi Ladies 
I was dx last month with invasive lobular carcanoma it was 3.2cm ER8 PR4 Hre2 neg and node neg. I had WLE and SNB and started FEC 8 days ago.
I am confused as I did find a lump and it showed on the mamogramme and ultrasound.
I have not been offered Mx or any kind of scan? I am worried now as when I was told it was BC I was hustleing for a Mx and they told me they would not recomend it as my treatment. I wanted the Mx to put my mind to rest, I am 44 and only got married last year and have just fostered a 4yr old. So I felt Mx was the way to go and when they said no I was devistated. I am now wondering if I should have kept on about it?
/hugz to all LisaJ
Hi Lisa,
When I was diagnosed the treatment initially recommended for me was chemo to shrink the large tumour then WLE, unfortunately due to the position of the tumour I ended up with a mastectomy.
I think, where possible, surgeons will try to conserve the breast and lumpectomy plus radiotherapy is reported to give as good an outcome as mastectomy. In the days after diagnosis when you’re being asked to make important decisions and when most of us don’t really know much about bc all we feel we can do is follow the advice of our doctors, but if this is really bothering you why not get a second opinion?
Claire x
Thanks for the reply Skimum, it is most appriciated.
However I must have had chemo brain the day I posted DOH!!! I have invasive ductal carcanomia,lol I am a twit at times.
I have had not so good news today. It started last week, had swelling in leg, sent to hospital with suspected blood clot, blood test and ultra sound ruled this out. Xray done got results today, secondaries in hip bone have spread now having CT scan to see what else happening. Hate this waiting game, hate this disease.
Oh Lynn, wish I had something sensible and reassuring to say to make you feel better. When will you be having CT scan? hopefully they can soon sort you out and get treatment plan in place. I hope you don’t have to wait too long, it’s enough to send you doo lally. Everyone is here for you, let us know how you get on.
Hugs
Tracey xx
Dear Lynn,
I’ll cross my fingers for you, I really hope the swelling can be resolved and that the CT isn’t too bad.
I too am a tad worried, as I have an enlarging lymph node in my armpit despite being on Tamoxifen and Zoladex; I was diagnosed with metastatic disease in lots of places so I still have breast and lymph nodes). Anyway, the onc is keeping an eye on it.
You’re right, this disease is a nightmare. Even when you’re being positive and happy, it is still there, threatening to throw you another surprise.
Hang on in there, it’s probably a case of getting on to the next therapy, we have several options lined up.
Take care
Anne xx
Sorry to hear this Lynn, hopefully the CT won’t show any further progression.
Thinking of you and keeping my fingers crossed.
Claire x
Thanks for the replies and fingers crossed for you Anne. CT scan tommorrow (thursday) It was the 13th Oct but rang them and got cancellation. I’m seeing onc on Wed 8th for results. Everything crossed, well not the legs coz swelling makes it uncomfortable!
Lynni, glad you got a cancellation so you won’t have to wait so long, keep us posted.
This bloody disease… it makes me want to kick things.
Lyn
Got results of CT scan today which show no further spread of cancer but did show a blood clot. Cant remember name of vein but it wasn’t in calf or leg like normal. Now injecting tinzaparin for 2 weeks then onto warfarin. Have a lovely coloured bruise on tummy now (wonder if Dulux could match the colour). Feel like a weight off my shoulders at the moment, I was convinced cancer had spread.
Lynni
I’m really pleased to hear the cancer hasn’t spread!
Now,let’s get shot of that clot!
Take care
Anne x
Thanks for the post Anne
They nearly did get shot of it in one go, nurse wanted to give me a syringe and a half instead of 3/4 of syringe (miscalculation!)
Onc rang me today keeping me on tinzaparin for 4 weeks then wants to see me. Has checked bone scan (done last week) which shows a “change”, shes sure its not a spread but the cancer is calcifiying. Fingers xd.
You take care Anne
Lynne