Chemo or not to chemo invasive lobular cancer

hi

When I was first diagnosed they 'only' found DCIS and told me I'd 'only' need a mastectomy ...

However the post op pathology (histopathology?) showed Her2+ and it was strongly recommend I have chemo. 

I asked the same question, if you've removed all the cancer why do I need follow up chemo. 

I went searching for anyone who'd said no to chemo and the only person I found had had invasive lobular and she said pretty much what you've said that lobular isn't particularly receptive to chemo. 

now the ramble ...

I'll put the kettle on ...

back in a bit

hugs

Carolyn

xx

Thank you Carolyn. Really appreciate you replying.

I’m interested to hear more so would really love it if you have time. It is great to hear from other real women out there who have had different but similar experiences.

Also like the way you put ‘only a mastectomy’ in parenthesis. I agree there is nothing only about it. In fact the only thing small about having the operation for me was the size of my original breasts. I am a b/c cup at best. But they were both precious to me and I am grateful to still have one.  

Sounds like you have been through it hard too and I would like to hear more. 

Xx

back ... now for the ramble

why chemo

• in advance of surgery to shrink tumours,
• where surgery isn't possible, and
• after surgery to mop up any stray cells

why not chemo

• other health factors which might make chemo too risky, age and life stage etc
• low to moderate improvement in stats
• personal preference, family or work commitments, not all of us can take six months off
• chemo effectiveness varies patient to patient and in some cases the risks outweigh the benefits

this is very simplistic but sometimes it helps to keep it simple

I was told that everyone who has Her2+ breast cancer is offered chemo and that NICE haven't approved Herceptin without it, so if I wanted to survive more than 5 years I was told I'd be an idiot to refuse, I don't think she used the word idiot but she did threaten to look me in the room until I agreed.

I have since found out that not everyone who is Her2+ is offered chemo but I'm thinking that's very early stages and tiny tumours with no lymph node involvement .

https://www.ncbi.nlm.nih.gov/pubmed/28382636

This article supports what we've heard or been told about chemo not being as effective in treating ILC (invasive lobular) or has limited impact on outcomes, whichever phrase your prefer.  *edited.

However your team might say that because your tumours were on the large side, over 50mm (65mm in my case) and a few lymph nodes were affected, they may suggest that it could be beneficial but chemo is brutal and the side effects are much more profound and long lasting than they allude to. I might start another thread about this topic actually, but I really struggled after chemo and I had my last dose Christmas Eve 2015.

I saw you posted support for someone else, we're all in it together and I found it really helped to have someone to confide in on here. 

You're still in shock or rather you're still in the middle of the grieving process. Shock, disbelief, denial, confusion, anger, sadness, blaming & bargaining, acceptance and moving on, and I went round and round rather than being able to move swiftly through it.  

Did they give you a contact card, I was given the number for the breast care nurses, all of whom were a bit useless in the two hospitals i had dealings with but I've heard others found theirs helpful and informative and very supportive. 

Just so you know, I usually advocate for saying 'no' to chemo because I think some people feel pressured into accepting it and sometimes the risks really do outweigh the benefits. 

The overall risk with chemo is 10%, that's a 10% risk of death, all cancers and all patients. 

Breast is a lot lower, something like 3% because breast cancer is treatable and mostly curable, we're good patients, we attend our appointments and take our medications. 

So unless you are given an improvement of 10% I'd say no thanks.

Mine was something 50% improving to 80% using the Predict tool and this is the bit I'm not sure on, I don't know if that tool works for lobular. 

https://breast.predict.nhs.uk

That's the link, feel free to play with it but I can't see ILC, quiz the oncologist on Monday !

Ramble over, how did I do ?

Carolyn

xxx

Dear Carolyn. 

Absolutely brilliantly. Thank you. You have really helped make some sense if the confusion and I feel a bit better equipped to ask the questions on Monday when I see the oncologist. 

Thank you. Also reading through your reply has helped to steady me a bit so thank you very much. 

Cant tell you how much I appreciate it and the really useful as well as caring info. 

I will keep posting too and replying when I might be able to help so thanks for encouragement as well  

How are you doing now btw? 

Thank you and love

I'm fine

As I said I finished chemo end of 2015, I then had Herceptin shots through 2016 and was discharged to look out for signs and symptoms all by myself, save for the annual mammograms.

However I'd been told that my breasts were dense and lumpy and I really ought to have ultrasound scans alongside and the reconstruction needs ultrasound as you can't squeeze the implant in the mammogram machine. 

Every single time they've 'forgotten' to book the ultrasound ...  then I found out they're short staffed in that department ...

I've emailed twice to try and set up this years ultrasound due in June but nobody has come back to me, I'll have to phone them. 

I dearly wish i'd had private healthcare and I dearly wish that the insurance industry would wake up to providing simple and cost effective cover, the NHS can't cope, it's spread too thinly.

I'd better stop there and step away from my soapbox.

have a lovely evening, if you want to tag me use the @ and type my name

hugs

Carolyn

xx

Wow you have really really been through it. Though your journey doesn’t surprise me. You take care and keep going you’re worth it. Thank you for everything today and you too have a great evening and weekend. XXx

Hi there,

Just wanted to update you, been to oncologist and if anything no clearer.  I have been offered the Optima trial, but that could just be confusing as my inclination at the moment is to not have the chemo, on the predict tool, chemo offers a rise of 8% above just hormone therapy, and I am having radio as well, so I sort of feel that it may not be worth it.  That said I have gone back to my oncologist nurse and asked if I might be able to have an Oncotype DX test as only two of my nodes were positive and apparently since October last year it has been available for those with breast cancer, E+, with up to 3 nodes positive.  Fingers crossed.

Thank you so, so much though, you have really helped and helped me to ask the questions that I couldn't quite get to before.

Hugs

xxx

hi

small steps and all that ... 

I've learned something today, I didn't know that ILC is included in the Predict tool.

8% is under my threshold but a line always has to be drawn somewhere and usually then moved the minute someone's results come close to it. 

How old are you?

Do you have any other health issues ?   I always used to laugh out loud when the doctors said you're in pretty good shape ... and I'd say, well, apart from the cancer ... and we'd laugh

Can you feel like you've got the flu for the next six months, so you need to work, do you get sick pay.  If you are a teacher,  you get to sign off sick. That was a good decision you made when you graduated. 

I was 'lucky' because I didn't have a choice, I'm a Libran and choice is fatal, one of the funniest things my husband ever said was to a waiter, don't give her a menu, we'll be here all week.  I am world champ level indecisive .

Then I'd choose the 'special' because it would be whatever was 'fresh' today, and he'd say "we'll be here all night because you chose the 'special' ...

I digress 

actually I made a good point

If you're in a restaurant and you make a choice, are you always happy with your decision making ?

Same goes with chemo. 

I chose fish once and everyone else had chicken and I had the worst food poisoning ever, compounded by the fact we had no water all night, I truly felt I wasn't going to make it.

All mushrooms are edible, some are only edible once. 

Ultimately at some point you have to be happy and content that you made the right decision . 

Like I said, I had it easy, she was going to lock me in the room until I agreed, I didn't really have a choice.

Only other clue is how do you feel, circulating tumour cells is the next big thing and if, after surgery, you have the CTC test and it shows you do still have circulating cells, then you must have chemo to mop them up.

I might have to invest in that technology ... it really would be the answer to our prayers ... actually, ask your team if you can have that ?

Carolyn

xxx

PS sorry for the ramble

Carolyn28 and I have always been on different sides of the chemo argument. My view is throw everything you can at the nasty beast to maximise your chances of it not coming back. 8% uplift is pretty good I think. Also ask yourself how you would feel if you don't have chemo and it comes back. 

I had chemo and had a terrible time (check my profile if you're interested) but despite that, I'd make the same decision again.

But really it's an individual thing, even though the decision may be difficult. Some people do sail through and don't have a hard time like I did. 

Best of luck with your decision.

hi Lynn  Kacang

can you get the CTC tests in Australia ?

I can't find any news on it in the UK, I know circulating cell tests weren't available here. Didn't Chole Cat go to Greece ?

annual scans coming up, fingers crossed for me and I'll be back in your backyard   

Carolyn

xx