Lobular cancer

Lobular cancer

Lobular cancer I’ve just seen a reference to an interesting item on the BBC website yesterday on lobular cancer research. Here’s the link:

news.bbc.co.uk/go/pr/fr/-/2/hi/health/6199422.stm

Kathy

Thanks, Kathy As a lobular lady, I really pleased that they have had this breakthrough and I hope they can get clinical trials going in 2 years time as they suggest.

Gandalf (aka nj)

As another lobular lady, yes, this sounds good.

Gandalf, I’ve just read your profile, and like you, I have no faith in the diagnostics. I really can’t see the point, apart from detecting another type of BC, of annual mammograms for us lobs. I did get an MRI, once eventually diagnosed, but how often are they going to repeat that? Is there a specific follow on for Lobular, or just the same old?

Once finished chemo et all, I’m going to ask for a mastectomy and reconstruction on the other one. It’s not as if it’s any good: cysts, duct ecstasia and other benign breast disease, so I’d feel happier with it off too.

Hi Alloway I haven’t been offered an MRI scan! They seem to treat lobular and ductal cancer in exactly the same way as far as follow-up is concerned.

I asked to have my ‘good’ breast removed 2 years ago, but the surgeon refused because he said he was not in the business of removing healthy (how does he know?) tissue, and the risk of recurrence was exaggerated. I hope you have better luck.

Hello Gandalf That’s dreadful!
I appear to be luckier. The consultant said that we should concentrate on no. 1, but that if I still felt the same way in 6 or 7 months that he would be “very sympathetic” about my wishes for mastectomy/reconstruction to no.2.
Is there another Clinic that you could be referred to?

From another Lobular Lady I had an MRI Scan when dx but my surgeon said that he still preferred the mammogram as MRIs don’t show up anything in situ! And this is through BUPA so, presumably, money is not an issue. Having said that he still sees me every 6 months.

After a couple of unsuccessful gos at clear margins, I opted for a mast/recon and, having read this article, am so pleased I did. I wasn’t too encouraged by the references to Tamoxifen or Aromastase Inhibitors possibly not being effective though as I’m on Tamoxifen. It was also never mentioned that it was difficult to treat - I knew it was difficult to spot - and I was told that I had a very good prognosis (may that be true.)

My surgeon did say that there was only a slight increase in chance of it coming in the other breast - he said it was the type of thing that was written in text books but had very little evidence in fact. I cling to that!

Anne
xx

Lobular…me too! I haven’t posted much but do like to read everyone’s views. I have checked this link - I didn’t know Lobular was ‘hard to treat’ so am a bit shocked. I am under Addenbrookes but no one has suggested having the other breast removed or even suggested anything much - it always seems to be me going along saying what about this and what about that. I have a strong family history and have been told I am ‘high risk’ - presumably of recurrence. Am considering a total hysterectomy next year as strongly ER positive. Bit worrying to think that Tamoxifen might not work on us Lobs - hate all this gambling as I am sure you all do too!

GraceT

Addenbrookes I started off at Addenbrookes too - so I wonder if this is a clinical decision that they’ve reached - and they do seem to be on the ball.

Grace, who is your consultant? I’ve got Mr Forouhi and he seems very thorough.

Anne

Lobular - What we aren’t told Hi to all you lobular ladies.

I’m kind of freaking out! No-one out there has ever told me that my localised advanced lobular breast cancer was hard to treat. When I asked at my hospital I was told it was treated in exactly the same way as ductal. However, I can remember a doctor at the hospital saying to me that the chemo would probably be of the least help. Was told the surgery, rads and tamoxifen would offer me better cover. I am on tamoxifen at the moment. I was told I would be on this for about 2.1/2 years and thereafter I may be changed to an “armidex” type drug. This is because I am considered “high risk” - I had cancer in 15 of my lymph glands. When I asked about it spreading to my other breast I was told that whilst lobular is more likely to do this than ductal it was not something I should get too worried about.

Would be good to hear what others think.

Love

Jeannie

Jeannie,

I’m post surgery and waiting to see the oncologist.
The doctor that said that chemo would probably would be of the least use - did he mean pre or post surgery?
Am I wasting my health and time?

Message for Alloway Hi Alloway

I was post surgery. However, I don’t think it would make any difference. I had 15 out of 19 lymph glands with cancer so I would have taken it anyway. However, it is a lot to go through if it is of no benefit. I don’t think there is anyone out there that could say for definite. I think they fling everything at you as they really don’t know what your cancer will respond to. Therefore, its best to take all that’s on offer. I hope you find that helpful.

In this month’s Breast Cancer Care News (page 3) it says “encouragingly, triple negative breast cancers respond very well to chemotherapy”. They also say “chemotherapy is considered to be more successful in treating hormone receptor negative breast cancer than hormone receptor positive”. This is my understanding. This is not to say that ER+ and PR+ do not respond but I have always understood it to be of more benefit to triple negative breast cancer.

ER+ and PR+ breast cancers respond to tamoxifen, armidex etc. However, I am left wondering just how much lobular responds to these drugs in light of recent comments. I’m also injecting myself with Iscador (mistletoe) and there are some interesting comments on this site at the moment (some not in favour). It makes me question whether I am doing the right thing. However, I have to go with my gut feeling and hope that I am doing the best for myself.

I hope things go well for you. Remember to ask your oncologist about anything you feel you would like to know. It would be interesting to hear his comments on chemo.

Sending lots of hugs.

Jeannie

for Mummybear Hi Mummybear, my consultant seems to be Dr Cox who is very thorough. It’s just that no one discusses anything with you unless you go along with queries. No-one mentioned that Lobular was hard to treat, although I was advised that in my case chemo would be of very little additional benefit to the Tamoxifen.

I find it hard to live with the uncertainties of bc on a daily basis and wonder how many of you stay so postive! I don’t think the Oncs have much idea actually what will happen but they seem to just ‘wait and see’.

GraceT

I agree Certainly it seems to have been my experience that if you don’t ask, they don’t offer.

Certainly my surgeon didn’t say anything about it being more difficult to treat and Dr Wilson the Oncologist just said that it was difficult to spot.

Call it Head in the Sand (if you want) but I just try and put it to the back of my mind and hope that everything will be OK. Mind you, every so often it all gets a bit much - which is probably why I’m on antidepressants.

Anne
xx