Chemo or not to chemo invasive lobular cancer

Carolyn28 CTC tests are available here but only for metastatic cancer. More about deciding how best to treat that rather than the yes/no of primary. 

Are you coming up for your 5 years? I'm turn 4 in May. No matter, I'd still love to see you - it'll be 4.5 years by the time it warms up again here at the end of the year.

xxxx

same, 4 years this year

but I need to tick off 4 before starting the countdown to 5 !!!

I'm trying to be optimistic    

xx

Interesting about Circulating cells ......I am getting more and more sure that secondaries need to be found as early as possible ( I had no symptoms, so got to a critical stage before treatment began ) there seems to minimal input to research / BCNs......or perhaps this is just my thought .   Best wishes 

Yes of course Carolyn28 Try hard xxx

Hi Carolyn,

Thank you so much again for that, so answers to questions.

I am 50, in overall good health although I have arthritis, and migraines, which I control as much as possible. That said in November of last year I was admitted to hospital with secondary sepsis following a UTI which has been reoccurring every 3-5 weeks since - something that does worry me if I have chemo as my white blood count will struggle to cope with any underlying infection.

I am also a single mum to an 18yr old son and a 16yr old son with autism - both of whom are doing their exams this summer.  I also work, full time until March, but the company is having to make cut backs so it is part time at the minute.  There is no provision for sick pay, so it is statuary which doesn't go far with sons.  Whilst I am working I will continue to get working tax and child tax credits which will help. Also my job relys on my memory as I am an auctioneer and valuer of fine art and antiques so remembering what things are, and their likely worth is pretty vital to my work and when on the rostrum I need to stay really on the ball to keep the bidding on track, and me on track with it - so working with Chemo and the likely effects on my brain even short term is a difficult thing to see working.  In fact, I suspect if I react badly to the chemo, and have to take substantial time off work it is likely I will lose my job.  It is only a tiny business and they really can't afford to carry passengers.

I owe it to my sons to do my best to make sure I stay healthy long term, but staying as an effective mother in the short to medium term seems even more important at the moment.

As for decisions I have made, well I have made some huge mistakes in my life, but know I am not perfect, so sort of get on with what is and try and sort things out as best I can.  Life is messy, rather than predictable in my world.  Usually just as you get one thing sorted out - eg clearing up cat or dog sick the cieling starts to crumble on your head in the other corner of the room - not just an analogy, that did actually happen, and I still have the hole in the ceiling to prove it - I will sort that out at some time when I am aloud to lift my arm above my head again. - however I digress.

Predict doesn't seem to differentiate for different types of Breast Cancer - eg ductal or lobular, so it can't factor that in, however apparently according to my surgical consultant at the breast clinic ILC is supposedly very resistant to chemo, so that is where I am taking that from, and it was confirmed by my oncologist, so the predict tool percentage is likely to be optomistic in my case.  Also I have been asked to join a blind trial where if I were tested (and there is no way to ask to be tested rather than not as it is a blind trial) the trial information reads that 'Most patients in Group 2 (those tested) wiill not have chemotherapy and can go straight to hormone therapy', suggesting that most patents in the trial in total won't benefit from chemo.

Your earlier reply over the weekend was so helpful, but I take Lynn's point too.  Still veering a bit wildly between the two options, so any further insights would be really brilliant. 

Thank you so much.

Sophie / Pollydog xxx

Been feeling knackered from the surgery and not great anyway, but I suspect that that has more to do with anxiety and everything else than being a 'real' thing, just psychosomatic.

Hi Lynn,

Thank you so much for your input, I have just read your profile as I was interested and wow.

I can see where you are coming from but don't know, maybe I am just a coward and don't want to go through all that chemo might entail.  I have replied to Carolyn28's post above to put some of the reasoning down, but still haven't heard back from the Oncology nurse about the test and every hour, never mind each day I seem to go from one end of the argument to the other. 

Hoping life in Aus is pretty wonderful at the moment and go well with the next check.

xxx

Hi - hope you don’t mind me throwing in my tuppence worth.  I’m on Kacang’s side and I had everything. Chemo was ok for me but obviously it can be very hard.  In terms of risk, there are lots of non-drug things you can do to improve your odds.  Mostly to do with lifestyle - losing weight, reducing/losing alcohol, exercise, diet, reducing stress (sorry if that seems laughable given your situation). Dr Susan Love’s Breast Book (5th edition) has a lot on this. She is a US Professor of Surgery and her “bible” is often mentioned here.  We tend to focus a lot on the medical treatment because that is what we are offered by our medical teams.  I have previously commented on this forum that giving up smoking does more to increase your chances of disease-free survival than pretty much anything else.

Best of luck with whatever you do.

Hi

Thank you so much for this. Still haven’t completely decided. But it is helpful to get the input. Discussed it with my GP too as she is really helpful and she feels it’s a really difficult one to weigh. Hey ho.

Meanwhile back on antibiotics for uti, this will be my seventh episode since October.  Can’t help thinking that it starting just before I noticed the breast cancer is strangely coincidental as it put me in hospital with secondary Sepsis and until then I was rarely ill with anything and never off work. 

Funny how our brains draw parallels in unhelpful ways. 

That said. I am lying in my beautiful bedroom with the sunshine outside and a good breeze blowing through. It’s not a bad life and I have my trusty hound back home who is hiding beside me from the cat who enjoys pouncing on her. 

Thank you all and I’ll tell you how it goes. Keep posting. It is lovely to be a part of the discussion as well as really helpful to get the advice. 

Thanks guys

hugs - gentle ones today though

xxx

okay

long term side effects they don't talk about

memory, you touched on this and it was a massive issue for me and still ongoing, the oncologist did tell me not to make any big decisions and to take my time, make notes and not make snap decisions

none of this will be practical for you in your job

toilet issues were similar to being pregnant,  I was always on the look out for loos and have only really just got over that

Chemotherapy, in my case was deemed essential for short and medium term survival, but actually increases your chance of recurrence or metastasis long term. I think the Predict tool factors this in, and I have a 20% risk. 

I'm still happy to advocate for not having chemo except for this UTI. 

I had the biopsy in May, about 3 days later I started to feel ill and got progressively worse up until surgery and my wound didn't heal AND I had a UTI. 

It is documented that some people react badly to biopsies but that overall the chances are slim and they are so useful for diagnosis that it is felt to be worth the risk. 

With the benefit of hindsight, had I stuck to my guns and refused chemo, those circulating tumour cells would have settled and spread. 

In which case I'd have to say have the chemo.  

The friendly radiologist also said "we've got one chance, we don't want this settling anywhere else"   that was whilst discussing the 2nd tumour that had been missed in surgery, as I was then effectively having neo-adjuvant chemo. 

Give me the timeline again, what happened to trigger the UTI, can you remember ?

Carolyn

xx

I was diagnosed with invasive lobular BC last Oct, 7 out of 21 of my lymph nodes were affected, so had clearance 3 weeks after mastectomy.

My tumour was also over 5cm. I was asked about the Optima trial too. I really didn’t want chemo, so thought I’d just go ahead with the randomised bit of the trial and hopefully get Hormone Therapy...No, didn’t happen I was told I got chemo.

I was told the computer picks ppl at random, the first lot have chemo, the second have their tumour scored, if score is over 50 those ppl get chemo as well and the others have just Anti Hormone Therapy . After I was told I got chemo I told the oncologist no thanks.

However after another appointment with the oncologist after Christmas, I decided to go ahead with chemo and throw everything at this. I was told like you by my surgeon the tumour was gone, all the tissue was and that he had got it all and he was very confident that was it.

I have 4 Children and a Stepson, whose girlfriend was expecting a baby. My eldest daughter wants to try for a baby within the next few yrs after getting married last year and my younger 2 were only 15 and 13 and all I could think was “What if I don’t do it”, I know my children need me and I would never have forgiven myself if I didn’t do this. I’m not sure they would either. I want to be here as long as possible.

Has it been easy...No, but definitely bearable. I’ve lost hair, my eyelashes are going too, I’ve had nosebleeds, have to inject myself with bone marrow boosting meds, niggling little effects but I’m alive! Obviously ever case is different but I’m sure the oncologists do their best for each patient and they are the ones in the know. 

Im 5 out of 6 chemos down now and im finding it harder since switching to Docetaxel but I don’t regret my decision, I ache, feel tired, have virtually no taste, bloating etc but I know when I look in the eyes of my children, I’m doing the right thing.

Sending Hugs Tina x x