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Anyone with lobular cancer?

17 REPLIES 17
moonshine
Member

Re: Anyone with lobular cancer?

gstarkey 123 have been following your thread - have you heard anymore yet - I'm right there with you , hope you have had better news. I am considering going private, have you gone down that route? would love to hear from you.
Tracey xxxxxxxxxxxxxx

magsi
Member

Re: Anyone with lobular cancer?

bringing this up for moonshine

dawnhc
Member

Re: Anyone with lobular cancer?

Hi G,

Like you I think that it is a myth that a few weeks wont make any difference. My lobular tumours grew very fast - doubling in the space of a week! When you can feel them yourself visibly growing like that it is very frightening and I think you are right to press them for being seen earlier. Mine turned out to be her2 positive as well which I think explains the rapid growth.

One of mine was not visible on a mammogram but I had quite a bad reaction to it and felt physically sick for a couple of days and a lot of pain from it. A few week later I felt a large lump. I felt the mammogram had stirred up what was already there even though it could not be detected. Do keep us posted and I hope you get seen quickly.

Dawn

gstarkey123
Member

Re: Anyone with lobular cancer?

Hi again everyone

Thanks so much for replying - it is definitely a relief to hear from other people with lobular BC.

Unfortunately, mine is growing like a demon. My consultant phoned last night (Monday), having seen the MRI scan they did on Friday, to say that it had got significantly bigger in the 9 days since diagnosis, which he said was "very unusual". He has now ordered a bone scan (tomorrow) and lung and liver x-rays (don't know when), and I am going to see him on Friday, if not before.

The lump, as I can feel it, is enormous - I'd say about 10cm across, and hard, and hurting my breast now - the left one is beginning to be noticeably bigger than the right, and the skin feels tight. Any action really can't come soon enough. I am going to call the consultant again in the morning and demand a meeting - I can't wait till Friday.

The good news is that I have found out I can go private, so I hope that will speed things up even more. I know everyone keeps saying that these few weeks don't make a difference, but I really think this is the exception to the rule.

By the way, my early experience of this is that I had some twinges and pain for quite a long time, but no lump, then my son head-butted me (by mistake!) one day, and after that this lump just appeared out of nowhere. I thought it was a gland he's damaged, as it felt like when I had mastitis, but it didn't go away for a couple of months, so I went to the GP. But it really seems to have gone into overdrive since the core needle biopsy - I liken it to thrusting a stick into a wasps' nest - it feels really angry now! (Sounds mad, I know, but that's how it feels).

Anyway, I will keep you posted on the results of the latest tests. Good luck with your own lumps!

Gxx

ScottishHoosie
Member

Re: Anyone with lobular cancer?

Hello all.

The end of August last year I found a lump. GP said she didn't think it was anything bad, but it needed checking out. I went private for that and it took about ten days. Consultant said it didn't feel sinister, but we'll check it out. Immediately we did a mammogram - nothing. Did an ultrasound - something there, but don't know what. Did a fine needle aspiration - abnormal. Consultant stressed we didn't know what it was. Scheduled a biopsy for two days later, also private. It then took 19 days to get the results! I went up the wall. Came back grade 2 lobular.

Doc said I needed an MRI and the waiting list in Aberdeen is long, so we went private. I got through the door quicker, but consultant who analyses it is the same one who does all the NHS stuff, and she was on holiday. I had to wait another three weeks. It turned out it was just the one lump. It was a bit bigger than they'd thought, so they recommended chemo first. We discussed this on Monday. Hubby and I agreed to go that route, and there was a plethora of tests and started chemo on Thursday. I had six cycles of AC (doxorubicin and cyclophosphomide), three weeks between cycles. After the first treatment I felt a difference, and my consultant said he could feel a difference, too. At the halfway point I had another MRI to make sure the AC was working, otherwise they would have switched me to other chemo drugs. The AC was working a treat, the tumor was nearly gone, so we kept with that. Oh, at this point they also inserted a marker in case they couldn't find the tumor later. Well, it was a good thing, because they couldn't find it after the chemo. I had my last chemo the end of February and had my surgery - lumpectomy and WLE - 1 April. We were going to have the surgery private, too, but the ultrasound couldn't find the marker and their mammogram isn't advanced enough; they inserted a guiding wire into my breast down to the marker. They knew exactly how much area around the marker they wanted to remove. So, I had my sugery on the NHS.

The pathology came back with clear lymph nodes and just a few cancer cells. That AC sure did kick butt!

As I had had the chemo first, the surgery was followed by five weeks of radiotherapy "to mop up any stray cells". I had very few problems with that, and the staff there were wonderful.

In Aberdeen it is not possible to have chemo or radiotherapy private. You only get it on the NHS. But they don't keep you cooling your heels to get the treatment and the staff are great. I had all my MRIs private. I usually see my consultant private, but could see him on the NHS if I wanted to. I don't want to, though, as when I did do that, I had to sit in the breast clinic for nearly two hours AFTER my appointment time. At some point, though, I'll be facing those breast clinic waiting times, as I don't want to keep claiming on the insurance (more on that in a little bit).

For follow up they keep mentioning mammograms. I have no faith in them (for me, I'm sure they work well for other kinds of BC). I don't know how many I had, and they never saw the lump everyone could feel (I'm told lobular lumps feel very different from ductile ones). They are now agreeing that in addition to the follow up mammogram, I can also have a follow up MRI; hubby and I pushed hard for that. I have told them that I shall want that one on the NHS, as I don't want to keep seeing my no claims discount shrinking away. The next MRI will probably be due in my next insurance year. If I claim for that, I'll be paying a higher insurance rate. I think the NHS got lucky, not having to pay for my MRIs, most of my mammograms and biopsy thus far just because I was so scared, I couldn't wait. Oh, I was also told that a few weeks here and there in treating my cancer won't change/harm things. I did not have an aggressive cancer, though.

I'm now on Tamoxifen. I thought things were going smoothly, but think I might now be having a side effect. I was due to see my GP on Thursday, so we'll talk about that then. I'll probably be on this for two years and then be moved to aromatase inhibitors. I am now 41 (40 when diagnosed) and was pre-menopausal. I haven't had a period since December, though.

I wish you the best of luck with your treatment. I hope it hasn't gone into your lymph nodes, and you don't have to wait too long. I had a few bouts of having to wait longer than they had said for results, and it nearly drove me mad.

thistle
Member

Re: Anyone with lobular cancer?

I had the same experience as Gwyn. Routine mammogram, (my third). I had always self examined particularly as I have had inverted nipples since I was young. Only when I was recalled and looked again did I notice anything wrong. The colour had gone from the areola, and there was a slight pucker at the nipple. The mammogram showed what appeared to be two lumps, but when I had my mastectomy it turned out to be one lump but shaped like a barbell. Because it showed up as if there were two lumps a mastectomy was recommended. I was also stage 2 but had lymph node involvement. I waited four weeks for my operation because I was having an immediate LD reconstruction as the two surgeons are in the theatre at the same time. I was also told that waiting a couple of weeks longer would not make any difference.

Love and take care

Thistle

Gwyn2
Member

Re: Anyone with lobular cancer?

my experience was completely different. I felt nothing at all. Had my first mammogram, convinced it was just a formality, only to be recalled and eventually told I had a lobular cancer! I was obviously very lucky it was found reasonably early (just in stage 2) by the mammogram.

Regards

gwyn

Catfan
Member

Re: Anyone with lobular cancer?

I agree that lobular doesn't present with the same symptoms as other forms of bc. I, too, had a heavy PMT feeling that I expected would go away, that was until I had a sharp pain under my arm which sent me scuttling off to my GP. Mammo was clear, as was FNA and it was only the ultrasound and 3 core biopsies that confirmed the worst, although I was told it was a small lump. Following mastectomy 'it' turned out to be 3 lumps ranging from 4.5cm down to 1cm. I'm afraid I have very little faith in my annual mammo now and will be hammering on the bc clinic door if I have any suspicions concerning my remaining breast.

ForumMember
Member

Re: Anyone with lobular cancer?

Hi
MIne wasnt found on mammogam either. My nipple became inverted. I didnt have any pain only after biopsies so not sure if that was connected. Never warned about it. It continued until mastectomy.

ForumMember
Member

Re: Anyone with lobular cancer?

hi,
i had lots of pain for months and months - like PMT pain - but no real lump until a few months before dx - even then my GP coudn't feel a distinct lump and the first doctor I saw at hospital said there was no lump! It makes me feel less stupid about not going to the dr earlier to realise there are others with same experience.

holly56
Member

Re: Anyone with lobular cancer?

I noticed my lobular cancer as it felt like the pain that you get in your breast when you are suffering from PMT but it didn't go away after my period. It wasn't a lump but more of a thickening.
I also had pins and needles in my arm which nobody has ever told me was connected to the cancer but it did go after I had my mastectomy. What annoys me is that we are told that breast cancer isn't painful but mine was and nobody ever told me that there was a type of breast cancer that didn't show on a mammogram. I had had regular mammograms since my mother cousin and sister had been dx with cancer thinking that if there was a problem that it would be found. Mind you I don't know why I thought it would be as none of the 3 people mentioned were dx from a mammogram they all found the lumps themselves even though they all had regular mammograms...and theirs weren't lobular.

chukki
Member

Re: Anyone with lobular cancer?

Jules1964 - the feeling you get with lobular cancer is very strange. I'll try to explain, mine was a constant niggly sort of ache and always in the same place also when I bent forward it felt as though the tissue inside the breast had no elasticity and pulled tight stopping the breast from falling forward naturally. There was also some distortion to the nipple, it was starting to pull to the left, which I was initially told was my age and things change as you get older, yeah right!!!!!!

ForumMember
Member

Re: Anyone with lobular cancer?

Can I ask a question to you ladies with lobular. Mum has just had a partial mastectomy on Thursday due to lobular. She never really talked much about her cancer before hand, but she has opened up abit since. She said to me in hospital. That she should have really realised there was something wrong, as though there was no lump or pain, her breast felt very very strange and very heavy. Is this common is lobular cancer. She said she can't believe how different her breast which has been reconstructed feels already.

ForumMember
Member

Re: Anyone with lobular cancer?

Hi,
I have lobular, am 36, small comfort I know but a 9 day wait for an MRI scan is actually pretty good, some people can't get MRI scans at all and some have to wait 4 or 5 weeks for results, that said I went up the wall waiting 8 days for mine and then 10 days for the results, which showed that there was just the 1 small tumour, with "one suspicious looking lymph node". I had WLE on Monday 14th July and all the lymph nodes under my armpit removed (my surgeon's standard practice.) Came out on Wednesday.
Now I have to wait 2 weeks to get the results of the pathology report which will tell me definitively if it's spread to the lymph nodes (like you I think it has - had twinges etc for ages). How on earth will I wait two weeks? The thing is, you just think "get it out of me NOW" and then once it's out, that is replaced by another worry. The waiting is awful but I don't think it will make any difference to the prognosis. It's the not knowing - feeling out of control - are they keeping something from me? thoughts which are the worst.
I rang the Samaritans at one point between biopsy and diagnosis (5 day wait) and the woman breezily said "the weekend will fly by" well it didn't, it crawled by!
Try to occupy yourself with nice things, and be with people as much as you can.
Love,
Fiona

maxbryn
Member

Re: Anyone with lobular cancer?

Hi there
There are a few of us lobular ladies around on the site.
I was just like you wanting it all sorted out in a week or less. Had to wait 4 weeks for operation as the surgeon was going on holiday back in Feb this year. I was tearing my hair out. Wanted to go private etc, second opinion. But in fact the surgeon told me they can wait 3 months and very little will have changed. Very cruel to do that a person and they dont. 4 weeks is the guidelines. I dont know how I did wait 4 weeks , was very upset for most of it.
But I did put trust in him that he did know what he was talking about although he knwo I was unhappy.
I ended up with a mastectomy, one node affected and now having chemo.
The waiting is definatley the worse.
As for going private you would probabaley only gain a few days by the time they did their investigations.
Good luck I 'll look out for youre progress.
Lyn x

Louise_BCC
Member

Re: Anyone with lobular cancer?

Hi gstarkey123

As Misha mentioned, Breast Cancer Care publishes a couple of useful publications which may help you when explaining things to your son. If you are interested, I have given below the link to our webpage which details how to order these:

http://www.breastcancercare.org.uk/content.php?page_id=12225

I do hope you find them useful.

Kind regards

Louise

misha
Member

Re: Anyone with lobular cancer?

Hi gstarkey123,

This waiting stage is so hard, I think much harder than when the treatments start. My own diagnosis took 9 weeks and whenever I raised concerns about the delays I was told "a week here or there will not affect the final outcome". It's hard to take on board, I know, but in all liklihood your tumour has been developing over many months and a few more days/weeks would not see a significant change. The various tests and scans are not perfect but they all build up the information for your team so they can recommend the best treatment for you. Not wishing to alarm you, in my case the first suggested treatment was a lumpectomy but the MRI scan found additional pre cancers and I ended up with a double mastectomy - but at least it was a single surgery. If I'd had the lumpectomy then there would have been the trauma of more operations.

Have you heard about a new book "Mummy's Lump" - it's a short storybook for children to explain what's happening?

Hope you get through the waiting time without too much anguish.

Best Wishes
Misha

gstarkey123
Member

Anyone with lobular cancer?

I was diagnosed last Weds (July 9) with a Grade 3 lobular tumour. I've had to wait 9 days for an MRI scan to check if it's spread to the lymph nodes (the needle biopsy wasn't clear; I'm pretty convinced it's there - I keep getting twinges and pains in my armpit). Then the NHS team won't meet again to discuss my case until Wednesday - 2 weeks after my diagnosis. I'm climbing the walls, thinking the tumour is growing every day and desperately wanting them to take it out, although they might want to do chemo first, to shrink it. Is anyone else in the same position? My family is being brilliant, really rallying round, and my mum had BC 8 years ago, had a mastectomy (no chemo or radiation, just Tamoxifen) and is fine now. But I feel this whole process is taking ages! Plus, I am 38 and have a 3-year-old son, and haven't said a word about this to him yet. That's another worry. Sorry to vent so much, but I'm really stressed about all this. If anyone has any experience of going private to get quicker treatment (it's an option), please let me know. Thanks
xx