My heads a shed!!

Hello ladies!!
Have been reading the discussions here for days now but never quite got round to saying owt.The site is brilliant and I have taken great comfort from the love and support that is evident in the messages posted.
I was diagnosed with invasive lobular carcinoma on 1st April this year (ha ha! April fool!!) and had a mastectomy and lymph node sampling on the 16th. Although this had been agreed with my surgeon, on the day of the op, my nurse read the details of my op to me and said that I would be having a clearance, which totally freaked me cos I had read so much about lymphodema. If I had not kicked up a fuss, this would have gone ahead and I would have needlessly lost all of my lymph nodes, because they proved to be completly clear.
I have been recovering from the op for three weeks and cant believe how well I feel! But thats my problem, and I am wondering if anyone else has agonised the way that I am doing.
They tell me that all cancer was removed, nothing in the nodes, but now they want me to have all this treatment “for insurance”. Chemo, rads and hormone therapy. However, at the same time, the onc said that the chemo would be “of limited benefit”. Also, on the scale of 1-300, my cancer is 100 oestrogen receptive, quite low. My cancer was very large…6.8 cm, and very close to the chest wall, so I can understand the need for rads, but do I need to take these awful drugs which are goin to ravage my body for 5 years? I am a smoker and have read that you shouldnt go near tamoxifen if you are a smoker. I am trying to stop, but the risk will not disappear overnight, even if I do.
I am a single parent with two beautiful girls, aged 4 and 14. If I have to take time off for needless treatment, I may well lose my home. But is it needless treatment.? No one seems to be able to give me any straight answers, and I am just told that ultimatly, the decision has to be mine. Dazed and totally confused. My heads a shed and I am supposed to have made a decision by Tues. Has anyone else agonised in this way? Would it be selfish not to have what they are recommending when I need to be around for my kids?? Dunno. Tracey.

Hi Tracey
Speak to your breast care nurse - they are there to talk it all through. You are like me in that you need to know the why’s and possible risks.
I have spent weeks ‘studying’ breast cancer on the internet, and thought that lobular was less risky, but I am no expert - only your surgeon and team can tell you all of this.

I had a scare yesterday. I was due for a mast yesterday having been diagnosed with pagets (nipple cancer) and was advised that it is likely to be localised to that area. However, I do need a mast due to nipple. But then a chest xray showed something on my lung. Yesterdy was horrible -for that day my prognosis was not good - NOT GOOD, not curable, just maintainable for some time. However, today my support team at the hospital turned around a CT scan and results in 36 hours with good news - I am clear. Today, I have it all in perspective - I still have something that has the potential to be curable.

My diagnosis was difficult, due to the fact that my type is rare - my symptoms was only discharge from the nipple (and blood). A mammo showed no masses, only some microcalcfications behind the nipple. Discharge sample, core biopsy didnt show anything - but my surgeon knew that there was something wrong, and thought it was invasive ductal cancer. It was then mentioned that because I was considered young (41) that there was a 90% chance that I would be advised to have chemo.
But since then, they managed to get evidence from a sample of the nipple that my cancer is pagets - although, they dont know if that is the full picture until after the mast on Monday.

Look at the bigger picture, speak to those people who know about your diagnosis, listen to them. Take their advise, and take the support from us all here.
I dont want chemo - Im hoping I dont need it… but if I do, then I HAVE to.

I hope this helps

Hi Tracey,

what a dilemma you are in. If only someone could say 100% this won’t come back. But they, and we, all know from experience it just ain’t like this. I have been down this road now for 18 years, am still here despite several ‘recurrences’ (which were actually not a spread but new tumours) and I took all the treatment they wanted to throw at me. There are just no insurances whichever way you go. Are they suggesting chemotherapy first, and then hormonals i.e. tamoxifen etc, or just hormonals. Have you asked the oncologist more about the risks because you are a smoker, and the alternatives because at a time like this you don’t really need the stress of giving up smoking?. Do you think it is something you could do? Oh i can think of so many questions I want to ask you but don’t wont to appear nosey. Questions like do you have a mortgage and have you got the sort of cover in place that will pay out big time on this diagnosis. I know a lot of the women here hadn’t appreciated they had that sort of cover and were able to make delayed claims which helped them financially.

I am sure you will get a lot more replies with helpful thoughts and hope they will all help you come to a decision.


Hi Tracey.

Welcome to the forums where I am sure you will receive lots of advice and support.

If you would like to talk this through with one of our trained members of staff please don’t hesitate to call the helpline. Here you are able to talk in confidence about your fears and concerns. The number to call is 0808 800 6000 and the lines are open Monday - Friday, 9am - 5pm, Saturday, 9am - 2pm.

I hope this helps.

Kind regards

BCC Facilitator

Hi tracey, firstly have you talked to your mortgage lender? im sure they would try to help you in some way, we moved two years ago, the day before the move and a new mortgage with a new lender my husband was injured quite badly in a collision with a car and the new mortgage company was absolutely brilliant, they could have pulled the plug on the whole move but didnt, so i would start there, maybe you should ask yourself what you would tell your daughters to do if they were in your situation (god forbid), its not easy i know and if you need another week to make your mind up tell your oncologist!!! i asked mine what would he want his wife/daughter to do chemo or not?
good luck anyway
anna x

Hi Tracey

I had WLE and node sampling late Jan 16mm Grade 1 tumour and have just completed rads. Am on tamoxifen for 5 years as we er+ - I was considered for chemo as I had clear lymph nodes but intermammory node was affected - after discussion the onc team decided that chemo would up my chances by 1% but my chances were high anyway so they concluded that the risks of chemo outweighed the benefits.

Everyone from my GP to the consultant, the BCNurse and then the onc were aware that I was a smoker (ironically I had started taking champix the day I found my tumour … needless to say it didn’t work) but I did class the stopping smoking as a ‘work in progress’… decided to complete my rads and then try again and am currently on nicotine patches. No-one has ever mentioned smoking and tamoxifen as being incompatible.

I think it might be a good idea for you to speak with the BCNurse and discuss the various treatments and raise any questions you may have.

I understand what you are saying about the financial side of things - I am a single with an 18 yr old son (who gives me a realistic amount of board money each month) so I know what it’s like to struggle with the finances. I only took 2 weeks off after surgery - my choice, no pressure from the company - and then a week later on for physio. 6 weeks of rads I just left the office early … I’ve been on full pay all the way through but I’ve had hidden extras which have caused a bit of a financial headache.

Lisa, thats fantastic news, you must be bouncing!!! You must have been going through hell while you were forced to wait.Big happy hug for you!You are right about needing to know stuff,I have read and surfed endlessly for weeks, but everyones situation is so unique so the literature always seems to be too generalised for my liking! I realise that I am going to have to do a lot more talking before I make any final decisions. I have several issues with chemo,especially as I was told that it would be “of limited benefit”, but mainly its the inconvenience. I dont want to be off work for financial reasons. I dont want to lose my hair,as I have just grown it and gone blonde for the first time in my life ( I am a 43 year old punk who still thinks shes 19!) I have just started a new relationship with the most amazing, gorgeous man.
I was going through my tests when we met at a Stranglers gig and it was love at first sight!!! He has been amazing and never faltered for a second when I got my diagnosis and had surgery. The last thing I want is for my libido to crash and burn now! Also, have been a heavy drinker for 20 odd years and dont know if my liver will be strong enough to cope with the drugs…All my concerns seem rather lame when I read them back, but we cant help the way we feel about things and I have promised myself that I will be brutally honest, even if it makes me look shallow!

Dawn, thanks for your thoughts. 18 years down the line, you must be exhausted. I dont think you are being nosey at all!! I am in privatly rented accomodation, so will struggle if I take too much time off work. I have no health insurance or financial back-up so its a bit of a worry.
They want me to have chemo first, then rads and tamoxifen.Prob about 10 months of treatment they reckon. Will just have to go back and talk to them some more on Tues, try to get a clearer picture of the risks involved.

Thanx to both of you for taking the time to reply and allowing me to share my thoughts. Trace x

Thanx all for the advice!!
I had given up smoking (with the help of champix) until I discovered my lump, but started again during the stressful time waiting for diagnosis.
I went back to see my gp the other day to get a new prescription but was told that I would have to attend the smokers cessation clinic, for which there is a waiting list! I want to give up again because I know its advisable if having rads, but have to rely on will power while waiting to attend the clinic!!
Its a crazy screwed up world. In the circumstances you would have thought he might have just give me a repeat script eh?
I have learned over the last few weeks that the most important posession I have is my sense of humour, its the only thing thats kept me sane!
A little thought for the day ladies…

Twixt the optimist and pessimist,
The difference is droll;
The optimist sees the doughnut,
But the pessimist sees the hole…

Good luck with the stopping smoking. I agree that under the circumstances they could have been a bit flexible with the procedure abd given you a prescription. Did u find that the champix worked for you … daft question I suppose cos u had given up! I continued to take mine after I found the lump and had elected to stop on day 13 … of course this came and went & I was still puffing away. It was one of those double sided coins - I knew it was stupid cos the word ‘cancer’ had been thrown at me so smoking was a stupid idea, but I was sitting around and doing not a lot post-op and so I smoked more out of boredom.

I’m a week into the patches now and doing not too badly ----- everyone in the office and at home is still alive so it would appear that I’m coping.

Oh - just remembered - my Mam spoke to someone who recommended a book called ‘How to Stop Smoking the Easy Way’ … available at Boots (amongst other places) beside the NRT products. Might be worth a read whilst you wait to get to the top of the waiting list

champix worked brilliantly for me. The cravings disappeared and on the odd occasion when I over-rode my better judgement, the cig tasted foul and I didnt enjoy it at all so I just quit. I know it will work again if I can get back on it.Good luck with the patches, I tried them years ago but they gave me horrendous blisters! Take care you.