Mixed lobular and ductal - what treatment?

Diagnosed with breast cancer Recently diagnosed with breast cancer
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3 am - can’t sleep.

I’ve been reading the forum for weeks now, since I was first diagnosed, doing what I think many do: looking for someone with the same initial diagnosis in order to predict what might happen next. Which I know is not right, as there are so many factors and each is different. But I can’t stop.

I am 51 and post-menopausal. I am asymptomatic but recently diagnosed via the National Screening Programme with 48mm lobular plus nearby 5mm ductal, according to mammogram and ultrasound. Had follow up MRI which oddly only showed a 35mm abnormal ‘region’ (which I find confusing as MRI is more sensitive for lobular and usually indicates a larger region than mammogram/US). Biopsies confirmed all are invasive, ER/PR +, HER2 -, grade 2. I had a choice of lumpectomy or mastectomy, and opted for the latter as I want it all out. Surgery planned this week (almost 3m after mammogram). Treatment plan expected 3 weeks later ie. December.      

It may sound odd, but I am afraid that I won’t be offered chemo. This is because I am terrified of it returning down the line and I just want to attack this with everything - in part why I have opted for mastectomy. I understand that lobular is usually slower growing and therefore does not respond as well to chemo as ductal does. But I don’t understand how a mixed cancer is assessed. PREDICT (breast.predict.nhs.uk/tool) does not differentiate. I know that recommendations will depend on what surgery reveals, but I am finding it impossible not to constantly think about this. I just want to be armed with as much knowledge as possible when I go for the appointment in Dec, so that I can be confident that it’s the right treatment plan if chemo is not offered.

None of these concerns are for myself. Rather, it is for my three children. One of them (daughter) is chronically ill and has just come out of yet another lengthy, traumatic stint in hospital. I just need to be there for them in years to come. I don’t want to leave them while they are young adults. I don’t want to leave my daughter to fight her future battles on her own. I don’t want to leave my wonderful, supportive husband to manage this by himself.          

So that is my story so far, incase anyone is/was in a similar position and has any words of wisdom.

Or even if I just help someone else by sharing 

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Katone, Sorry, no answer to your question.  Just based on my experience, I don’t think they will treat you conservatively, especially since it is invasive.  Mine is IDC, and they are not conservatively treating.  I just made my first post on this forum and find it interesting in what drives each of us to comprehend what we are facing.  I’m second guessing the ‘standard protocol’ and trying to lessen it while you are worried they won’t include enough.  I’m primary caregiver for my mom, so I understand your concern to be there for your daughter and family.  Blessings to you as you meet with your oncologist… I hope all of your questions are answered and you have peace and confidence in the decisions!  

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Hello @Katone  

Welcome to the forum, but I’m sorry you find yourself here and your mind is racing in the middle of the night. 
Please be assured that even though you are currently feeling completely out of control of your illness and what is to come, your oncologist will give you all the options and what the outcomes are for all treatments, you don’t have to wait to be offered it/ask for it. You may have seen on the forums people being told percentages of treatments (particularly hormone therapy) all a bit mind boggling but you too will be told and given your “choices” with treatment (I say “choices” as I think most of us feel we didn’t choose to get breast cancer and we don’t “choose” to put ourselves through treatment but ultimately you have to consent to your treatment). My breast cancer was ductal only I had surgery and radiotherapy and I distinctly remember my oncologist saying you can have chemo if you want however we believe it will only give you a very very marginal decrease in preventing recurrence but it is your choice and personally I declined. 
I hope this helps to assure you that you will absolutely be given the best treatment for your diagnosis, but remember there is lots and lots of support available to you and you can absolutely ask every question you want answered (even if you perhaps you don’t feel able to ask the individual at the time, you can always speak to the nurses on the help line) 

For many the hardest part is the worry of the impact our illness has on those we love, but you are very treatable and you will come through it all. 

Wishing you all the best for your surgery this week

AM xxx

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Hi Katone,

I am feeling everything you have said (I too am awake every night worrying). It’s such a stressful time as it’s full of the unknowns. Sending you so much love and strength and please know you are not alone.

I can tell you about my story which may help.

I was diagnosed less than 2 weeks ago with mixed ductal / lobular 2.8cm on MRI, grade 2, ER/PR+ and currently waiting for HER results as they were borderline.

If HER comes back negative (like yours), then I will be having a masectomy (I have opted for double) with immediate reconstruction (infact I will be having this regardless of positive or negative HER but it means I can have surgery first).

If the nodes are all clear, I will not need chemo unless the Onco DX test suggests I will benefit from it. The Onco test is a lab test that looks at several genes and sees what the chance of reoccurrence is based on the data. It’s actually quite accurate.

The Onco test is usually done when it’s early stage, ER+ and HER-

If Onco score is low and suggests I don’t need chemo, then I will have just hormone therapy after surgery.

Having said all this, if sentinel node (or any other nodes) are positive, I will have chemo as well as hormone therapy. Currently all the scans show nodes are clear and I am praying it stays this way.

In your case, do you know if your nodes were clear on the scans as that will indicate whether you will need chemo?

I honestly think if you will benefit from chemo they will ALWAYS give it to you. If on the other hand you don’t need it as it won’t change your prognosis, that’s even better as you can recover quicker and be there for your wonderful family.

On another note, my mum had triple negative bc 30 years ago with 7/8 positive nodes. She was given a lumpectomy and radio (if that was today, she definitely would have been given chemo).

I was 15 when this happened and we all thought we would lose her. She is still with us today, fighting fit and cancer free (touch wood). I guess what I am saying is you will definitely kick this in the butt and the bc team will ensure they get the best treatment for you.

Hope this helps and sending you lots of love and strength.

Carrott 

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First of all Carrott, what a wonderful story about your mother. It was advanced cancer and she survived it even without chemo!!! That really made me happy to read. I hope that gives you a lot of hope, too, even as your diagnosis is different (but a much better prognosis, too).

But Katone, I do understand the desire for chemo just as insurance. I just got finished with my bout in fact. I was node and LVI negative but my oncotype score was intermediate and when that happens and you’re under 50 they do say you will benefit enough from chemo to take it. But if your scores don’t, please don’t feel that means you aren’t fighting your cancer optimally. Chemo can do more harm than good. For example in my situation, I was offered one less chemo medication because I was node negative and that concerned me at first. Shouldn’t I take all three drugs that is normally used in the US? After all I was a grade 3 and relatively young (48). I wanted to hit it with everything I had. But then I found a study that showed that node negative disease actually did better long term when they only had those two drugs. If they had the three drugs, survival statistics went down. There wasn’t a theory put as to why but I’m sure it was something to do with how chemo effects the body and how that effect influenced cancer coming back. Anyway the long and short of it is that if studies do not show chemo being of benefit to you, you don’t need to take it. It will probably do more harm than good and may actually take away from your prognosis instead of add to it. 

If I can make a suggestion on your questions though, write them down and keep a list of what you want to discuss in your appointments. And if those questions involve trying to understand more about your diagnosis that’s okay. I always ask my oncologist questions about the pathology of my original tumor. Anyway, I meet with her tomorrow and have been keeping a running list of things I want to talk about since my last appointment. Will tabulate all of it tonight but it’s the only why I can remember all of my questions and make sure I get them answered.

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Hi Katone

I’ve been reading this thread with interest. I was diagnosed in 2018 with two tumours, one ductal, one lobular, one hormone-receptive, one triple negative. This was after a clear mammogram, a clear ultrasound and an “I don’t think there’s anything to worry about” from a consultant who, weekly, was obliged to update me with more bad news. All I’d presented with was two small raised freckles on my areola! Fortunately I adopted the ostrich approach, took in very little and just trusted my team to do what was best for me.

The problem with needing to arm yourself with as much information as you can is that it doesn’t actually increase one’s level of control or active participation in treatment. It might make a psychological difference and I can respect that approach. However, as you are finding out, additional knowledge can fuel anxieties, create more questions for which there may be no answers and leave one feeling worse. Predict was a useful tool BUT it is based on data that is almost 20 years old. Treatment for breast cancer has moved on in leaps and bounds but Predict doesn’t factor that in. Nor can it factor in the unique composition of each person’s breast cancer, something breast cancer science has again moved forward tremendously in the last decade or so. It begs the question (for me at least) - why on earth would anyone use such outdated data and regard it as a useful guide?

There is a lot of information on Google. It’s a minefield. Papers are outdated as soon as new research is revealed. A layperson is unlikely to learn anything beneficial. In any case, what difference does the knowledge make? You still have to trust your MDT to get things right. A little knowledge is a dangerous thing, they say. They, whoever they are, are so right. Having adopted the ostrich approach throughout my treatment, I bravely asked my BCN to talk me through all the data I’d ignored for months. She covered everything except one line. It nagged at me and, at stupid o’clock that night, I googled it. It was my prognosis. It sent me into a tailspin of horror but fortunately, my BCN’s wonderfully sane advice sorted that out. But once read, things can’t be unread. You can’t forget. You can rationalise that the data is years out of date or you are not a statistic but a unique person so statistics might well be irrelevant, but you can’t forget a prognosis.

If you want to read up on your condition (and remember, you don’t have your complete diagnosis yet), it might be wiser to contact the hospital and ask for guidance on what to read, beyond the pretty useless generic guides. Once you are a breast cancer veteran, you will be able to navigate the information overload more easily but, right now, you are emotionally vulnerable. Let it go. You surely can’t hope to know more than your MDT. By all means challenge their treatment plan if you feel it’s not right but ultimately, it’s their very well informed decision. You are likely to be given chemo because of the lobular breast cancer but much will depend on the stage, which surgery will reveal (I went from 1 to 2 to 3 in that short time). Bear in mind too that unnecessary chemotherapy can be counter-productive. If a patient moves on to develop Stage 4 breast cancer (as I have), the chemotherapy can reduce the number of options and combinations of treatments available to you, which may make a major difference. 

I feel like I’m ticking you off, for which I apologise, but my intention really is to suggest you let it go and TRUST. It is very hard to let others take control but it’s rare that a layperson can know better than a trained oncologist. Ultimately it’s what will give you better peace of mind. You might find Liz O’Riordan’s blog an interesting read. She is/was a breast surgeon very experienced in the field of breast cancer - then she developed it herself and the blog shows how ultimately her perspective had to change.

I do wish you all the best, particularly in finding some peace of mind as you go through treatment. 

Jan xx

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Hey

i was diagnosed with the same as you in my left breast and in my left lymph nodes. I only found out Thursday! I’m 45 so by chance felt a lump. 
waiting for my results was pure torture, I really struggled the first week.Now I know I feel a bit of relief as I know I’m now being looked after! I’m waiting on MRI and then I’ll get my treatment plan, so far I believe I’ll be having chemotherapy and radiotherapy as well as an operation. The doctor said as I’m young he can give me aggressive treatment. Obviously it’s going to be difficult as I’m a single mum but I can completely relate to what your saying! I feel better knowing that I’m going to have chemo so it’s less chance coming back! I think maybe talk to your bcn and voice your concerns, they really might be able to explain to you why and make you feel less anxious. Good luck and always here for a chat!

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Hey Mel,

Great to hear from you and thank you for asking us how we are doing. I am ok thanks. Now in full swing of Exemestane  and zoladex injections. I have also had my first zoledronic acid infusion.

The side effects have been barely noticeable but I did stop exercising a few weeks ago as was travelling lots with work and my God did I feel it!

My joints started aching on a morning and I got a big bout of depression too. I hadn’t realised just how powerful exercise was.

I am now exercising daily again and side effects have disappeared again.

Great to hear you’re in full swing with chemo and already completed 3! How many more do you have? Hope you sorted your financial stress too? It’s such a stressful time anyway that the last thing you need is to worry about money too - I do hope your worries have subsided xx

sending much love 

Carrott x

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@Carrott @Great to hear things are moving on! I didn’t have side affects with the zoladex but I did as much walking as I could! Not sure I’m up to full on exercising yet ? but it’s definitely the one thing that makes a difference!

I have another 5 chemo treatments, so I finish that part of treatment in September. Still stressing a little about money, I’ve never been sick before so many forms etc to do but chemo can knock me of my feet which makes concentrating on forms so much more difficult! 
My son and his partner and babies are taking me to Weymouth for 5 days in July so that will be lovely to have a change of scenery :heart: xxxx

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Hi @Mel00 

Hope you’re doing well. Just wondering if you have finished your chemo now?

I hope it has gone ok for you

Sending much love

Carrott

x 

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Hey @Carrott  Thankyou for checking in❤️

since my last post I’ve been quite unwell so have twice had my chemo postponed, still have 5 more to go!

I picked up a nasty virus so was poorly the whole holiday, I felt terrible on my son?

I had a ct scan as I get really breathless even when I’m talking and my oxygen levels go down to around 89%, the ct has shown scarring on the lungs and my oncologist is sending me to a lung specialist to see if it’s because of the chemo or virus.

How are you getting along? How’s the exercising going? Xx

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Hi Mel,

sorry for such a late response. The forum was making changes at the time so I couldn’t post and I was meant to come back but forgot.

How are you feeling now? Has your virus cleared up? Hope all is well.

I have my second op tomorrow. It’s for the a mastectomy and reconstruction of the other breast as a preventative.
I lost my mum about a month ago (not to breast cancer) so really sad to not have her with me this time. Last time my husband and mum came and it was comforting having her.

However, at least I know what to expect this time.
Please do let me know your news xx
Sending much love
Carrott

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I am so sorry to hear about your mum :broken_heart:
You must be finding it very difficult going through this without her to lean on X

Hoping your surgery goes well! Please keep us updated.

I have 3 chemo sessions left out of 8!
Finished the EC thankfully as I didn’t cope well on the last two! I am on steroids for my lungs now and also being treated for two blood clots.
Started pac chemo, first one took 6 hours! But was a breeze compared to EC, my second one I had an allergic reaction so spent the day in the hospital but still felt great compared to EC :rofl:
They are trying again Friday and keeping everything crossed it goes as planned! I’m on lots of medication to hopefully help.
Had to have my picc line removed because of clotting so the nurses are not impressed trying to find a decent vein in one arm.

I have a ct scan beginning of October at UCL hospital so they can book me in for my second surgery, I’m feeling a little anxious about it to be honest, I think it’s waiting on the biopsy results again!

Sending love to you and your family and will be thinking of you! Please let us know how it all goes!

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Hi Mel,
Surgery went really well thanks. In fact, I am so surprised at how much less painful it is this time round.

I guess last time, I had node biopsies and also the surgeon had to cut very close to the edge due to where the tumour was.

This time, there’s no node removal and the cut was done in a way that was best for healing so easier all round.

Good to hear you’re progressing with treatment. Sorry to sound thick but what is an EC? Also what’s the CT scan for? Is this related to the Gynae issue from before or is it for the breast?

I know waiting for results is rubbish but at least you are moving in the right direction.

Sending much love
Carrott xx