Hi I was diagnosed in January with LCIS after having milk ducts removed because of a clear leakage. I was told nothing more needed to be done as it only put my risk of getting breast cancer up slightly. Unfortunately I have just been diagnosed as having Invasive lobular cancer after finding a small lump which still did not show up on ultrasound. I have had blood tests taken for bones and liver which have come back clear, had a breast MRI scan today and will get the results on thurs but I have already been booked in for a double mastectomy for 24th oct …not long to go and i am really scared of the outcome of results of MRI and the operation. After reading some of your letters i realise i am not alone but was wondering if any of you other ladies has had this type of cancer. All support gratefully received
Hi Sandyoak
I am sorry to hear of your recent diagnosis. I am sure you will soon receive support and advice from other users. In the meantime it maybe helpful for you to read the Breast Cancer Care information leaflet on Invasive lobular cancer. It can be down loaded from the following link:-
breastcancercare.org.uk//docs/invasivelobularbreastcancerfeb05_0.pdf.
We also offer a helpline service where you are able to talk with someone in confidence about how you are feeling and receive advice on any concerns you may have. The helpline is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm. The number is free phone 0808 800 6000. Please feel free to use this service if you think it may help you.
Kind regards
Katie
Moderator
Breast Cancer Care
Hi there Sandyoak,
There are a few of us luscious lobbies around, I’m doing the chemo thing first so will be ages yet before my mastectomy, but the others will help you, I’m sure.
Sorry that you’ve had to join this club, but a huge welcome.
hugs
Ruth
PS I can thoroughly recommend the primary resource pack from the publications page
Ruth
Hi thanks for replying I kept checking for messages last night and wondered if i was the only one. I do not understand the bit about having chemo first can you tell me more.
PS hugs gratefully received
Hi Sandy,
No you are not alone, but there are not so many with lobular cancer, probably all had an early night!
I was given the choice as to which order to have my treatment - I opted for chemo first … one, because i liked the idea of being able to see if and how well the chemo was working, but, more importantly it has given me the time to save/beg/borrow enough to but some nighties that are suitable and the other bits for when i go into hospital.
always hugs here by the way
so sending another huge hug
Ruth
x
I was diagnosed last week with invasive lobular breast cancer. I found a lump. My GP thought it felt like a cyst, but it needed to be checked out. Mammogram was OK. Ultrasound was slightly fiborous, but still OK. The needle sample came back abnormal. I had a biopsy two days later, but it took nearly three weeks before I got the results. They told me the plan they wanted to follow, which included an MRI. Unfortunately there is only one radiologist in Aberdeen qualified to read the MRI and she is on holiday as the schools are out. So, their plan has been turned all around. I am having my MRI tomorrow. Tuesday, when the radiologist is back for one day, my MRI will be analyzed and the report written. Some time after that we’ll be asked in to discuss what they recommend. I’ll have my surgery 1 November. My surgery could be anything from a lumpectomy and lymph node(s) up to a double masectomy.
I don’t understand why with all the digital possibilities, they can’t send my MRI somewhere else to be read when the specialist is on holiday. There must be other people in Aberdeen and Grampian waiting on their MRIs.
Best of luck, Sandy. I hope you’ve caught yours early, like we’ve caught mine. My consultant says IF they are going to find cancer, they want to find it at this stage.
Hi Ruth and ScottishHoosier
Thanks for your support, sorry its taken time to reply my friend has just called and another one is coming soon to take me on a girly day out so i will probably back on later or tomorrow when i get my results. You will have to keep us informed of your journey as i am sure will will end up having a lot in common hopefully more than just the dreaded breast cancer.
Hi Sandyoak,
I too am a lobular lady. I was lucky enough to detect it myself - had some puckered skin and then found a thickening rather than a lump. Consultant said lobulars aren’t often found until they’re larger (mine was 12mm) and can be harder to detect (I think) on mammograms. This was Dec 06 and I had WLE, SNB - no nodes affected and 5 weeks radiotherapy plus 5 years tamoxifen as mine is ER+ . Whilst lobular is more rare it is treated in the same way as ductal and I don’t think there is any difference in outcome.
Let us know how you go on.
Take care
Thinking of you.
Shorty xx
Hi Sandy Oak
I too am a lobular lady. Had chemo then mastectomy, now nearly finished rads. From what I understand as shorty says there`s no difference in overall out come / treatment principle, but the lobular type may occur in both breast at same time and may be in more than one place. Hence before they do the surery they do really careful scanning such as the MRI to know whats needed. Mine was found to be in more than one place but only in my right breast (by MRI) so I had a right breats mastectomy. So until they know the MRI results as you say your surgery could range from WLE to double mastectomy. I was recommended to have chemo 1st as I had obvious lymph node involvement (they were huge) and the chemo started to work on them straight away. MRIs are still quite speacialist areas for breasts (I think) I had to go to another hospital for mine. Hope this helps.
Good luck and keep in touch
Jane
HI everyone just got back from consultants good news is nothing showing up on left breast but unfotunately the cancer in the right breast is larger than first thought 4cm and they have found another one that is only mm so having a double mastectomy on weds with recronstruction depending what treatment the onc says i have to have when i see him on tues as i have not met him yet. If anyone has gone through the double and recon at sime time please will you let me know how things went. good news is that mri shows no node involvement so fingers crossed.
Thanks to you all for responding
Sandra
Hi Sandyoak - I was diagnosed with a left sided lobular breast cancer back in May of this year. I had all the MRI scans which thankfully came back clear so it hadnt spread anywhere.Had a left sided mastectomy on 25 May which was fine I felt quite a fraud afterwards cos I had no pain or anything only these horrible drains to contend with. My consultant took 15 of my lymph glands away and it had spread to only 3 of them. I am halfway through my chemo which they have said is merely a preventative. Not been too bad just affected with tiredness which I can put up with. finish treatment week inbetween Xmas and New Year then start a three week course of radiotherapy. I have had fantastic support from all consultants and macmillan nurses and the staff at the centre giving me my chemo I love so much. they make a what should be a frightening experience much better, put up with my crying which I have bouts of and make me laugh also. Hope everything goes ok for you, have faith in your consultants, my thoughts and prayers are with you.
Speak to you soon I hope
Maureen
Hi maureen thanks for responding can i just ask you about your mri ? you said that it was clear but yet it had spread to three nodes. Was it a body mri scan you had or a breast one. I was hoping that because the breast mri showed nothing in the nodes that they would be clear and hoping to have reconstruction at same time as mastectomy which probably wont be possible if i have to have chemo and radiotherapy.
Thanks for your thoughts and it is really nice to be able to be in contact with people who know what you are really going through.
Sandra XXXXX
Hi everyone
I am a new lobular lady. Went for my pre-op assessment today. Will have left boob mastectomy and level 1 lymph node removal and reconstruction (saline implant) on 1 November. Then, depending on what is found, I may or may not need chaemo. Have grade 2 lobular cancer - lump is now large (5-6 cm) and at least 3 tumors there. I went to my GP back on 24July when I first noticed small lump but my GP said he thought it was a lipoma and was not presenting as cancer so put me forward to breast clinic as routine. My appointment was for 26 September when I then found out I had cancer. Can’t stand the waiting - just want to be told that the surgeons managed to get it all and that the lymph nodes are clear. I’m not a very patient patient!
My thoughts and best wishes will be with Sandyoak on 24th October.
Jane XXX
Jane
Thanks for your sharing your story, I will keep you all posted on my progress. Dont know yet what i will be offered as i have not seen onc yet (till day before op ) but i know my consultant said she wants to remove all nodes and that they will prepare reconstruction with back muscle and she has ordered implants to do immediate recon but if onc says that i need radiotherapy i will probably have to go back at a later date or implants to be put in. I can see by the time you sent your message that you are also having trouble sleeping, it is good to know that there is somewhere you can turn to at any time of day or night but sometimes if no-one else is online you feel a bit alone. Keep posting your messages and we can stay in touch even if its only to have a good moan. Thanks for your thoughts and wishes and the same to you for Nov 1st
Sandra XXXX
Good luck on Wednesday, Sandyoak.
I don’t know if I should just have a double masectomy if they only want to remove the one. Part of me says to get rid of both if one must go, just so I don’t have to worry about this happening again. And then, since we’ve decided to go private as we’ve been paying for the insurance, will they pay to have a healthy breast removed? But I’m putting the cart before the horse. Need to keep on waiting.
Hi ScottishHoosier I have no sign in my left breast but dont know if i could put myself through this again, and as there is a chance that it could come in the other breast at a later date thought i would go for it. I had a mammogram last thurs and it has bot changed since the one i had in feb (rather worrying that it is now 4 cm and still not showing up on mammogram or scan) Getting scared now but really dont have much choice. Consultant said today that i might only be in till mon depending how things go. Are you going for reconstruction at smae time if no further treatment needed? Iam but need to see what onc says first i have not seen him yet. Will see him tomorrow so dont know yet if i will wake up with new boobs or not on weds.
Chin up SandraXXXX
If I could, I would have the immediate reconstruction. I have two young kids, so just want one stay in hospital, if we can manage that. I’ve read the reconstruction booklet here online, but I’m totally confused as to what kind I’d prefer. I’d rather avoid the artificial ones. The tummy one sounds on the surface good (get rid of some of that post-baby-fat), but don’t want to mess with the muscles. And I really don’t want to give up my car for so long, but if needs must. 
*sigh* I’m sure my consultant will guide me. The important thing is to get the cancer out.
hi scottishhoosier
I too was dx with lobular invasive in nov 2005,had chemo first …they wanted to remove my breast straight away , but i refused and demanded chemo first as iwould be spending xmas in hospital …no way.anyway im glad i put my foot down ,after all its my body! i got the worst over first the CHEMO ! then 6 months after had breast removal with immediate reconstruction , which was constructed from the muscle from the back, i was in hospital for just over a week,the surgeon made a fantastic job.
Im on tamoxifen now for 4yrs.I too didnt fancy the false breast,and i didnt want to wake up after surgery and only feel one boob! i asked about the tummy op…but was informed by the consultant/surgeon that it involves a a lot more surgery , mine was 5hrs the other op is about 8hrs i think, and theres more pain in the stomach ,and i would have to go a different hospital to get it done {i live nr edinburgh} so it was too far out of the way .
But you are right most important thing is get the cancer out,your consultant will guide you .but dont be pressurised into any thing your not happy with,its your body!
Good luck with any choice you decide
Hi ScottishHoosier In one of your other messages you asked about bras from M&S. I went to one in leeds but was told only do prostethis ones in Meadowhall Sheffield and Pudsey but they all do the soft sports bras for after recon. A few ladies have mentioned Tesco do a good soft sports bra rather cheaply too and that asda do post op ones but i havent looked. Surgery for me tomorrow feeling very anxious today.
Sandra XXX
Hiya Curvykath,
I’ve only met him twice, but I don’t think my consultant is the type to put pressure on a patient. He’s been great so far. Thanks for telling me about your experience.
Hey Sandy,
Thanks for the tip about Tesco. There is now one here in my town, too. It isn’t the biggest, but maybe they have something. It is nice not having to get into Aberdeen for every little thing. You know, the extra time in driving (although it isn’t far), parking, and in term time getting back out for when nursey ends. And thanks for letting me know about the availability of the special bras at M&S. There is a Mothercare with easy parking not too far away. I saw some people like maternity bras, so maybe that is another option.
I’ll be thinking of you tomorrow. I wish you the very best of luck!!