wife, had lumectomy for ductal now they find lobular +++

Hi, my wife was diagnosed with breast cancer early Feb, had the lump removed but the pathology reads horrible!
The lump was ductal, they found multiple lobular (invasive) 9 lymph nodes sampled, 9 nodes converted into cancer!
Cancer in the fatty tissues around the nodes.

We are both terrified.

Had a CT scan this week now have to wait for results.

Where on earth do we go from here?

Thanks for any support.


Hi Mike,

I know it is like a kick in the face, but I had a lumpectomy in 2006, no clear margins and they also found invasive lobular, as well as 10 nodes infected. I went on to have a mastectomy, chemo and rads. Then had a second mastectomy on advice of Oncologist, as lobular can be difficult to find. I had reconstructive surgery at the same time as elective mastectomy, and now take arimidex.
Not an easy path to take, but doable and hey - I am still here:)
Easy to say not to worry, but honestly, one step at a time, and you can do it!
Fingers crossed for the CT scan, and I am sure others will be along who are far more articulate than I am.

Take care…

Dear Mike

Welcome to the forums. I am sure that you will continue to receive lots of support and information from your fellow forum members, I hope this will help with the worry you are both feeling at the moment. I also wanted to let you know that Breast Cancer Care have published a Resource Pack, it has been designed for anyone newly diagnosed with information to help you better understand your diagnosis, test results and various treatments, it is available via the following link or by contacting the helpline:


You and your wife may find our helpline useful to call during this time, they can talk to you about our other support services and also offer support, information and a ‘listening ear’. The number to call is 0808 800 6000 Monday - Friday, 9am - 5pm, Saturday, 9am - 2pm. I hope you find this helpful.

Best wishes

Thanks both

The issues around my wife (to be, we marry on the 10th April after 17 years together)
She has a bad skin condition called Hidradenitis (see: petitions.pm.gov.uk/Hidradenitis/ for info)
Diabetes type 2, and due to inability to take regular exercises a very hight BMI.
These would seem to be complications and indeed she was quite poorly after the lumpectomy despite that being just 1 hour long.

Reading the path report is horrible, stage 2 seems likely.

We are still waiting for receptor details lets pray it is not of a mixed type?
As there was ductal cancer and now lobular has been found does this mean its mixed?
Ductal was stage 3, invasive lobular is set at 2.

I am at the point of not knowing what to do to help, I feel so bloody weak myself which makes me feel even more guilty.

We have arranged the wedding (just a simple register office one) so that there is something to look forward to, we get the CT results on the 4th so hope the surgeon will hold off until after.
She desperately does not want to lose her breasts! it would be such a physical and emotional shock, we are hoping that she might be able to have hormone treatment to contain or shrink the cancer while she tried to get healthy ready for any radical surgery.

As I say, I am a bit lost just now and appreciate any help.



Hi Mike

I’m really sorry to read your post and just wanted to let you know that I was diagnosed with invasive lobular cancer back in 1995 and was on Tamoxifen for nearly 10 years. At that time I was never offered surgery to the other breast (in fact I didn’t realise I had lobular cancer until 3.5 years ago) and fully understand the predicament you find yourselves in.

All of this must still be very new and raw to the both of you but just wanted you to know that I’m sure I’m not the only person on here who has had a similar breast cancer to your wife and is still here 13 years later.


Pinkdove, thats very encouraging news!
Of course we need to wait for the receptor news but if it has one at least it looks treatable.
From what I have read this lobular cancer is a real (swear word) and hides from most imaging attempts, thus its usually quite advanced when found.

I also understand that if its in one breast its usually in the other.

Are you still on tamox?

Whats happening now.

Bless you for taking the time to reply.


Hi Mike,

I am a lobular lady although mine is still different from your partners. | was diagnosed Dec 06 and my consultant said that whilst lobular doesn’t occur as frequently as ductal it does respond very well to treatment. It is more often than not ER+ (oestrogen) and so responds to hormone treatment - tamoxifen / arimidex. When I questioned recurrance on the other breast he said that there was only a slightly raised chance of this happening over ductal and there would be frequent checks on the ‘other side’.
I am sure that with your love and support, which you are obviously giving her, then you will get through this together - I didn’t feel my relationship with my husband could be any better but what we have been through has strengthened it even more! Keep posting as you will both get so much support here.
I hope you have a lovely wedding and enjoy it to the full.

Take care

Shorty x

Hi Shorty

Again some light in what has seemed a very dark time for us, thanks for this.
If we can possibly avoid the mastectomy we must for her on so many levels.
The path report says that the largest Lobular found (found in path so far) was 12mm
Nothing showed on mamo or ultrasound scans, this would seem quite small over the ductal that was initially 30mm but had shrunk to 25mm at biggest when removed!
My mother had a long struggle with breast cancer over 15 years and finally had a mastectomy about three years ago, she is still with us but she had 15 years controlled and shrinking the tumour before finally it broke through the drugs.
Mum is still with us and doing well.
I thought this was my time with this cancer over and done with.
But clearly not, with 1in8 women having it I suppose its no surprise.
But something must be done about this! why are you poor girls so vulnerable these days???

Once again, bless you for the care and support and I hope to see more like this here as it really does help!


Hi Mike

I was told that having lobular was one of the more uncommon breast cancers and was never discharged from the hospital because of that.

I hesitate in telling you what has happened to me since but I also need to tell you that I think it’s always been on the cards for me what has subsequently followed. My mum was 43 when she was diagnosed (I was 40 when diagnosed). She died at 46 and my aunt (her sister) was diagnosed a month after I was and she also sadly died within 3 years of her diagnosis.

Mine came back in 2004 but not, surprisingly, in the other breast but to my spine and liver but I think this is more to do with either a genetic or family history (am waiting for the results) rather than anything else.

I’ve now lived with secondaries for the past 3.5 years and am on chemo (tablet form) indefinitely but my quality of life is still very good and I still enjoy going out and doing all the things I used to (except for ski-ing which is a bit of a bummer!) and can’t reiterate enough that I hope you’ll see this as being what’s happened to ‘me’ and not necessarily to other people who have had a similar diagnosis.

I was on tamoxifen for 10 years, then switched to Arimidex when they found out I was post menopausal (due to first lot of chemo at 40). Not on any hormone therapy now (can’t be on it and chemo at the same time). I’m ER+ and HER2-

I’ve been doing some work with one of our local GP surgeries regarding secondaries (not my GP practice) and they are a big practice and currently have 109 primary breast cancer patients of whom only 6 have gone on to develop secondaries.

I think the fact that your wife’s tumour is quite small is really good news as the prognosis is so much better. Pleased to hear your mum is doing so well and that must give your wife a boost as well.

Good luck and keep us informed of what’s going on.


Hi Mike,

I was originally diagnosed with lobular cancer in 1990 and there was very little information available to patients then. All that I was told was that I had a " nice" cancer ( how innocent we were in those days), had a lumpectomy and a good dose of radiotherapy (the machine was later found to be faulty) and told I should do well! My lymph nodes weren’t tested and despite being 39, no one suggested that I should have my periods stopped. I had no follow up mammograms till 9 years later and was not given tamoxifen.

Amazingly I didn’t have a recurrence until 12 years later and that was a grade 3 ductal cancer in the same breast. No lobular cancer was ever found in the left breast despite me having 3 MRI scans. I have now been on femara for 6 years and am still doing well touch wood.

In a way I’m glad that I was unable to access all the current information back in 1990 as I think it would have petrified me and raised all sorts of fears which in my case didn’t transpire. Having said that I am now hooked on this site and spent hours researching when rediagnosed in 2002.

I wish you and your wife well and hope you have a sympathetic surgeon, oncologist and breast care nurse to support you.

Take care.

Wendy x

Thanks Wendy

There has been a element of ‘too much info’ but as each visit to the surgeon produced another massive face slap we decided this time to try and be ready for all we could.
This site has been most helpful with this forum and the pdf downloads!

My wifes lumpectomey scar is healing well and she has little trouble with arm movement, none of the cording or difficulties we were warned about.
Thats why we are now both very keen that further treatment should be drug based!
Having spoken with a few medical types :slight_smile: it would seem there is a small move away from mastectomy as the main treatment for BC! thank god is all I say.
Of course this has to be weighed against the possibility of spread, we know that.
Thanks for your support.

Hi there Mike

Sorry to hear about your wife Mike, How is is she coping with it all so far.

My mum has been diagnosed recently and one of the main things that could happen if her tumour does not shrink is a masectomy. Myself, sister dad and I are happy for them to do anything to save her life. They can do wonderful things regarding construction. All I am trying to say is try not to focus too much on that when you speak to your wife, she is probably really scared about the masectomy and wondering if you were still fancy her find her attractive if she has this removed. At the end of the day you can replace a breast, but you can’t replace her smile and all the other things you love about her. I know its difficult when you are concerned, but we have found the best thing we can do when talking about my mums cancer is to focus on the positive things that are happening and not to focus on the negatives so to keep her spirits up. My main worry is will she die, how will I cope if she is taken from me but I keep that topic totally away from my mum. Hope this helps.

Jules xx

Hi Jules

Yes I do understand, went through all this with my mum a few years back.
She is still with us.
The issues with my lady are a number of other health conditions that make ‘big’ surgery more of a risk.
Also, reconstruction may be a problem due to the Hidradenitis she has suffered from for 16 years.
There is a big issue about how she would feel if the breasts must go! they were the last part of her body that the Hidradenitis had spared, the one thing she was happy with and proud of.
Of course if it comes down to life or death then we will do everything to preserve her.
Will I still love her, of course.
But, things are not as clear cut as they seem and I am sure its the same with others.

What are they doing to shrink your mums tumour if I can ask?

Love and luck


Hi Mike

I send all my good wishes to you and your lovely wife, it certainly comes across on here just how much you love her and that in itself will be such a comfort to her.

My mum is taking a drug called Letrazole, which will hopefully shrink the tumour. At the moment its too big to just take out, as it is covering a large amount of her breast. She is going to the Marsden this week for a second opinion so will keep you posted on her treatment.

Love Jules xx

Thanks Jules

Yes she is my world and I am finding this attack very hard to take just now.

Good luck to your mum


Just back from the hospital appointment with my wife to be.

We faced the darkest time looking into the jaws of despair running up to today.

Well, I can advise you that all the prayers and good wishes you sent have done a good job.

Inexplicably! There has been no cancer spread!
The CT scan was clear apart from a mass on one ovary, this could well be nothing to worry about but will be checked anyway.

The team was amazed due to the lack of any spread! With her pathology report it was almost certain that the cancer would have been in the bones, lungs or liver! But instead nothing, not a hint.

They do not want to do Chemo or radio therapy as this would be too much for her due to the other conditions.

You may be aware that cancer sometimes has what are called receptors, in 'N’s case this cancer does and in fact is the highest value possible making it very susceptible to treatment with hormonal drugs.
This is what has been prescribed, nothing else just the drugs.

They will be keeping an extremely close eye on her and will review things in three months.

No surgery due to the risks and her own emotions.

So this is the best possible news we could have had today!
She still does have cancer and there is a battle to fight but it could well be one that she can win!

The surgeon and team even gave us a wedding card :slight_smile:

It feels like I can breath again!

Warmest regards


Hi Mike,
i’m new to this thread but just wanted to say its great you’ve both had such positive news and wish you well for a fantastic wedding day.
Best wishes, Rivergirl.

Hi Mike

So glad to hear your good news. I am not sure if you remember but you asked me what drugs my mum had been put on and I told you that because she was hormone positive she was being put on a drug called Letrazole. After two and a half weeks her tumour has shrunk to 2.5cm from 4 cm. We are feeling very happy and optimistic and I just wanted to let you know this as it seems your wife might be taking a similar drug to my mum on how well it has been working.

Good Luck!

J x

Hi Mike,

So pleased to hear your news.
Glad the scans were clear and I hope you begin to look forward to your future together. Keep posting to let us know how things are going.

Take care
Shorty xx