Jane ~ just noticed that you have already mentioned breastcancer.org ~ really good site
R|osemary
Glad this thread has come up to the top again. I did say i thought there were so many threads on the site there was no need for a lobular BC one but i am glad i found this thread.
Has anyone had a MRI on the NHS? How much is it to have one done privately?
I am going through a panicky phase as have had pain in remaining breast reminds me of my experience with the breast with cancer in in 2005.
Rx
Hi everyone
I agree finding this thread has been a godsend, so little on lobular cancer, it is a little frightening, i opted for the lumpectomy now having chemo, which starts tomoro, very nervous and anxious, wondering if i should have gone for the mastecomy, the reoccurence factor is worring me such a lot.
Like you Liverbird I too am wondering how much a MRI scan costs because if this is the best way to pick up this type of breast cancer it certainly is going to put my mind at rest each year. My sister has also had breast cancer and two great aunts, Wea re currently hoping to be tested for the gene factor.
Hope everyone is still smiling, love to all
D x
when i was diognosed with lobular it was after fine needle hadnt shown up anything despite my boob beibg like an orange i had severe pain ,i had a core biopsy which showed 4cm shadow after which i had mri on the nhs! . after my mastetectomy my growth was over 6 cm under my nipple .i think however expensive an mri is, if it finde cancer before it spreads could save more people from loosing their whole breast ,and less invasive treatments would possibly be needed.
Hi
I had my MRI scan on the NHS prior to my op. Was booked for lumpectomy and then had a mastectomy after scan result as more detail was picked up. Mine too was under the nipple. The surgeon said he still would of done breast conserving surgery but I didnt want that. As long as youre margins are ok geordielass you should be ok. To have a scan privately is around £200. I live in the northeast.
Lyn x
I guess I was “lucky” as the lobular cancer was my second breast cancer in the same breast, so I had an MRI of the other breast without asking, to check if I needed a double mastectomy - as I’d already had lumpectomy and radiotherapy another lumpectomy wasn’t an option. (First time round was an IDC)
On the other hand, it did take a bit of pushing to get diagnosed in the first place - I noticed a thick area last March but nothing showed on the routine mammo so I was happy enough. Then I realised it was niggling at my mind - with my history, my GP was OK to refer me at once, and although still nothing turned up on the mammo or ultrasound, and I was being told it was just scarring from the lumpectomy, the surgeon ordered 3 core biopsies and the rest is history.
What concerns me is the emphasis on “finding a lump” - I know it’s only around 10% of cases are lobular, but a thick area just wasn’t on my screen as a sign to get checked right away.
Not sure about the need for another category, though - once past diagnosis, the treatment isn’t all that different, so which area do you look in for info about chemo, arimidex etc? If anything needs its own category, it might be inflammatory, which does have a very different profile.
I find having “After treatment has finished” and “living with breast cancer” confusing already. And perhaps the new site will have an even better search facility? I used that to find out as much as possible about lobular (and the US site!)
Lyn
Hi all
Had my first chemo yesterday, went ok, although one of the drugs, did seem to send me off floating to the moon and a horrible peppery feeling in my nose, a very strange experience in itself. Had a terrible migraine all day and night, up at 4.30 this morning, no sickness yet! I am having the FAC treatment chemo.
Still havent sorted out a wig yet, got a couple of short bandana’s and some hats, anyone know where you can get any cheap long bandana’s from. Not looking forward to the hair dropping out mind.
Surgeon said my margins were good after taking my lump out as it was in the lobe area and quite deep in the breast, thanks for the cost of the MRI, Lyn (Maxbryn)
Celebrating my 32nd Wedding Anniversay today Girls. Take care everyone
Doreen x
Hi Geordielass
Just out of curiosity where do you live. With a name like geordielass it has to be my neck of the woods!!!
Julie x
Hi all, another new diagnosed lob here 22/07. I live in Essex and was quoted £352 for private MRI, luckily they had a cancellation and offered it to me yesterday, so now it’s done, and now I’m worried what it will show. My lob presented as a very hard lump with overlying dimpling of skin, is on left boob right on edge of inner quadrant. Have this morning been rushing round trying to get on top of housework that has been severely ignored and I am sweating my tits off (oh well that’ll save on surgery) Have stopped for coffee break and came on here. I can’t seem to go 5 minutes without thinking about it all - like living in a black cloud and I wish it would bugger off. Comforted by words of BS that BC is the most treatable type of cancer there is probably. Thank God for that!!!
Hi
Feeling great after the round one of the chemo only had a small amount of queasiness, mind you had plenty of headaches, still got one, but will live with that, lot more worse off than me!
Julie i live not far from the Metro Centre born in bonnie Blaydon proper geordie me! Blaydon Races and all that you know!!! how about you.
Dont worry Moonshine, you will get things sorted, mine came as a shock too, I had no symptoms showed up on my first mamogram, and had spread to my main sentinal node now i having chemo and radio then tamoxifen, we can beat this damm thing girls. so chin up and lets all march on. I keep telling people i am going to hooplas down the street and kiss George Clooney one day, this keeps me going at the moment, and of course my family and all my friends.
Doreenxx
Hi ladies,
What a lottery this is! I live within the Oxford area so was given an MRI scan of my other breast a few weeks after my mastectomy. A suspicious area was seen, so currently waiting for result of biopsy on that. It doesn’t seem fair that I can have an MRI here and others are told “only if you find a lump”.We shouldn’t be expected to rely on that. It’s too much anxiety, and might get missed again!
My lobular ca was also missed for months.The lump on my areola being dismissed as a swollen Montgomery’s gland, by both my GP and the consultant at the breast clinic, when i went to have a cyst drained. It was picked up later by a different consultant because, by then, the nipple was being pulled to one side and the breast had orange peel skin in one quarter.I was told the cyst had done me a good turn.Mine, too, did not show up on mammo or US. But punch biopsy of course showed that it was ca.
I’d be willing to pay for an MRI if I hadn’t been offered one.
Love to you all,
Ann xx
hi geordielass. im a fellow lobular and an exiled geordie,came to the west country as a small baby so no accent ,still have reatives in gateshead . i found that bathing sarongs were the best for bandanas ,they do them with beading as well i have a few very pretty ones that i wore when i lost my hair ,and if you visit matalan they have a sale on and are very cheap to buy ,my most expensive one was only £4 .black with sequins all over very nice for evening dolling up. hope this helps .lynn x
Hi Doreen
I live in Whitley Bay, not a million miles away from you. Where are you having your treatment.
I hope you get through your chemo okay. It’s still fairly early days for you. It was 3 years ago for me, I had bilateral mastectomies. It had permeated right through the right breast and they said 30% chance of it going into other, so I had bilaterals followed by immediate reconstruction. However, had massive infection 3 days after coming out of hospital, and had to have implants removed, eventually had inflaters put in to fill out the skin, over a few months, then had permanent implants 6 months later.
This site is a godsend isn’t it. Wish I had known about it when I was first diagnosed. Didn’t actually come on to it until Jan of this year, as had a liver scare, when they found a couple of patches on my liver. Eventually MRI said it was cyst and hemangioma. Still having twinges, but going up to see Liver Specialist end of August. Don’t think it is anything to really worry about, but GP thinks it could be something to do with the pancreatic duct.
It’s a good job I’m not that close to the Metro Centre, otherwise I’d have a permanently empty bank account !!
Julie xx
Hi all
Sorry not be back sooner, everybody been taking me here there and everywhere, still feeling good, apart from hair loss, started coming out in handfuls on monday night so took the drastic measure this morning and my friend next door, shaved it all off this morning, so I am sitting here like Kojak without the lollipop!. Will look in Matalan thanks Lynn, got a couple of sarongs will try them, got some scarfs from the hospital too.
Having my chemo at Q.E in Gateshead then Radio at General Julie. Was down at Whitley bay about 4 weeks ago Julie having a ice cream down by St Marys Lighthouse, very nice it was too. I spend far too much down that Metro Centre believe me, never come away empty handed. You have been through the wars the last few years.
My younger sister is now having a small lump removed, they dont think its cancerous, but because of family history me and my other sister both having it want to be on the safe side. Looks like the Centre of Life will take up our case and test our Genes, so keep all your fingers crossed everyone and hopefully we dont fave any faulty ones, but its looking likely we will. but miracles do happen, and angels watch over us, well I believe in them anyway. God bless everyone.
Doreen x Keep Smiling
Don’t mention the Metro Centre, if I lived local to it, I’d have no money. Off work this week and went on Tuesday, came back with a bag load ha ha. Glad you enjoyed your trip to Whitley Bay. I would have bought you an ice cream if I’d known you were coming lol. All my best to your sister. Hope everything goes okay.
I’m supposed to be getting investigated through the Centre of Life for bowel cancer, because believe it or not forget the BC, it’s actually bowel that runs in our family, and that added to the BC, they want my Mam’s Death Certificate and my Nan’s, but I don’t know if I want all that side of things investigating. To be honest got enough to worry about without any more ha ha. I think one lot is enough for anyone.
Actually on the shopping front saw some beautiful scarves in the metro centre the other day.
Julie x
Hi everyone
Had my second lot of chemo on wednesday, changed my anti sickness tablets, gave me a different injection to combat the migraines seems to be working so far, so keeping my fingers crossed, little more tired this time, but still waking up between 4.30 and 6 every morning, probably why i am so tired, ha ha.Hope everyone is doing great.
My little sis is still waiting to get her op, she is going into Sunderland hospital, said it is likely to be 2nd Sept, not happy she is having to wait so long said it would be done within two weeks told her she should have gone to the Queen Elizabeth in Gateshead. Hopefully it will be ok though.
Take care everyone
Doreen x
Hi Girls
hope yu do not mind me butting in - i have just had WLEon 7th August and just had some resuts ack. in short i have mixed invasive cancer, they removed a 1.7mm lump (although I only had a stretchmarkand no palpable lump) and apparently they left a number of little satelitte cancers. I am up for re-excision this week but the surgeon was talking mastecomy, i can hardly bear the thought of losing a breast. Have any of you got away wth only a WLE?
Good uck to all
Tuesday x
Hi Tuesday
Please talk to your consultant about your fears, discuss every option, ask him why a mastecomy, it might be the best option, he can advise which is best ask him what are the alternatives. My lobular cancer was 24mm with the main sentinal node spread i just had a lumpectomy, now having chemo then radio, but was prepared for a mastecomy. My sister had two lumpectomys before having a mastecomy, she wishes she had just gone straight for the mastecomy, but it is a personal thing, I believe. So ask the questions, dont be shy, its your body.
Good luck you will get through it, be thinking of you.
Doreen x
hi everyone
seems a while since i wrote had my third chemo, went ok felt more tired this time around and the sickly feeling is lasting a lot longer but just drinking plently of ginger and lemon tea with a dash of honey and lots of ginger biscuits and it does take the feeling away. i have been very lucky with the after effects mind the migraines are a little annoying. Its lovely to be pampered by the family. Everyone has commented on my wig saying how much younger it has made me look, but i much prefer to wear scarves or go naked!! Had a family wedding on saturday past in all that rain, the bride ended up breaking her foot in five places, bless what a day!!
Hope everyone is keeping well. how are you Tuesday hope the op has gone well. Take care everyone
Doreen x
Hi everyone, seems there are a few Geordies on this thread, I’m from Ashington. I was dx with lobular cancer Jan 07. For the last 8 years i had a mammogram as my sister had bc 13 years ago aged 29. My last mammo was in Oct 06, but 4 weeks later found a lump. Thought it cannot be anything serious as mamo was clear. Then noticed it was getting bigger and puckering of skin just before Christmas. Went to doctors who like me thought it couldn’t be anything sinister but coz of family history referred to Hospital. At diagnosis explained how difficult this cancer was to detect on mamo. But at time my sister and I were not aware some cancers were difficult to detect by mamo, if I’d known I may have gone sooner to doctor. My cancer has also unfortunately spread to bone and wondered if I’d gone sooner would they have stopped it. They say probably not. But I still wonder. Also been to Centre of Life, we are BRCA2 “mutants”, and they are brilliant.