Results

Hi again,

They mean that there were 2 areas of invasive cancer found. One was 2.6 cm in size, and the other was 2cm in size and was next to the area around  your left nipple. They removed 8 lymph nodes from level 1 and level 2 in your armpit (there are three levels, but usually only the first two are removed (you can see where they are if search on Google images.) It looks like both tumours were identical in composition, so they were 7/8 oestrogen responsive, 8/8 progesterone responsive, meaning that if any cells are left they should be well dealt with something like Tamoxifen or Letrozole if you are post-menopausal which you are given after your hospital treatment is over (the hormones mentioned at the bottom). The radiotherapy will follow the chemotherapy, and it's unusual to get it with a mastectomy, but it seems like one of your tumours must have either been very close to your chest wall, it doesn't say if margins were clear on it and they may want to ensure that the nodes on collarbone (supraclavicular lymph nodes) don't have any traces of anything. The report is a bit vague as it doesn't mention if there was any evidence of LVI, but they are being very thorough with your treatment afterwards!

Are you feeling any better? If you are down for round 2 of FEC could you ask for the F to be dropped as it's generally believed to have little extra benefit but a lot of people struggle with it. It's also common to reduce the dose a little if side effects are severe like yours. Have you had your blood results yet? Make sure that they weigh you as well as the amount of chemo is by weight. It sounds like you've had a terrible time:(((((

I really am having a bad time, and getting no real help, I was fine for first 4 days then bang, been at doctors twice at night, a&e on Monday for 6 hours, as all chemo line does us keep send me to out of hours docs, then they say it’s side effects, nothing has improved and I just can’t face 18 weeks being like this, I’ve not left the house in two weeks, I struggle to eat cause of the acid, weighed myself two days ago and lost over a stone, I don’t even want to go tomorrow, bloods not due till Monday as that’s the day before my next chemo, I’m exhausted and struggling to do anything other than sit

Can someone go with you tomorrow to support you and make sure that you don't have the same dose again, and ask if possible drop the F part considering how ill you've been? EC on it's own is really just as good as the FEC, and it's what my hospital has given for years and is one of three teaching hospitals in a large trust.  Also what anti-nausea drugs have you been given? Could you ask for stronger/better ones? The other thing is that they may delay your chemo by afew days to a  week. My neuts and white blood count was low this time before chemo and the nursing sister on the chemo suite said that it could be delayed if my results are lower next time. Have you tried things like bone broth, as that can help with white blood cells and platelets. I took it during my first cycle and it made a difference, but didn't the last one. Anyway, take care, and please let us know how you get on. (((hugs)))

Was given anti sickness meds to take 1st 4 days, then was given domperidone to take after if needed, I took them Thursday and Friday as I just felt sickly and then by Saturday all the acid problems started, I don’t even feel sick as such it’s just my stomache feel completely full right up to my throat, I was on omeprazole before chemo for acid in tummy (been like since diagnosis) doc on Saturday changed it to lansoprazole and things just got worse, had two days off them and then was told (by phone) to go back on the omeprazole as acid was building back upon throat, been back on them 3 days and nothing has improved, sick to death of them just telling me to phone the chemo line, why the hell am I being left to suffer like this, like everything isn’t bad enough, but nobody who is specialised wants to see me, just keep telling me different bloody things over the phone, all I say all day is burp continually and everything from throat to stomache is sore and all they want me to do is keep phoning chemo line 

Hiya sorry you're still having a hard time with the side effects. 

Do you know when you will see your oncologist again??? i'm sure if they knew how much you was struggling they would do something to help. When i became poorly after one of my treatments my oncologist lowered the dose of my last 2. 

Could you try getting an appointment or ask for him/her to give you a ring??? or one of his registrars, mention your weight loss and how poorly it is making you feel.  If you are going to the hospital tomorrow maybe ask if you can see him while you are there.

I have spoken to the chemotherapy unit numerous times and they just say if your unwell to phone the chemo line (again round in circles) I am seeing oncology Tomorrow to discuss what’s happened before round two due on Wednesday, but not seeing oncologist she said I’m seeing her, think she said she was a chemo sister and it would be fine to her if round two went ahead, I told her all that had been going on and how unwell I have been, how much weight I had lost and again she told me to ring the chemo line :-( that’s all everyone keeps saying is ring the helpline, I don’t know how they can even consider round two when I’m still so unwell and they can’t control this acid, what’s caused it, is it the chemo, the anti sickness stuff I took, the tablets I’m taking for acid isn’t helping and they just say keep taking them, I feel about done in

maybe you need to contact PALs its The Patient, Advice and Liaison Service. 

They will be able to advise you on what you can do if you are not happy with your care. The link has the option of finding the nearest service to you.

"PALS has been introduced to ensure that the NHS listens to patients, their relatives, carers and friends, and answers their questions and resolves their concerns as quickly as possible"

Could be worth a try.

Can I ask if you are being treated in an NHS hospital,  as they have PALS, where you could speak to someone about how you feel unsupported. There are other medications for reflux which are different to the usual ones,  and even Gaviscon Advance (not the other ones) might help to sooth your mouth,  throat and stomach. Some find that antihistamines can help, and at this point stress is probably a factor too for you. 

An oncologist is a consultant who is a qualified doctor with special training in the cancer drugs you are given.  A sister in a chemo unit is not qualified to decide. At our hospital pharmacy they don't  prepare medicine for a patient without the consultant writing on the patient notes that s/he had seen the patient  and checked their blood results and that it's safe to continue treatment.  In your position I'd ask for another week to recover and for EC chemo not FEC. If they refuse I'd try to go to another hospital.   I'd also think about speaking to PALS, as from what you've said you aren't being supported at a really difficult time and that really shouldn't be happening.....

Thanks guys, I am being treated by the nhs and it’s the only hospital close that does chemo, I don’t have transport so continually sending me to docs at night and hospital to just be sent home isn’t really great, whilst I appreciate I’m not the only sick person on the planet I do still feel I’m entitled to be properly cared for and treated. I’m not sure how to even approach today as I am already extremely anxious about going.

Also forget to add I still have periods even though I am 54, not sure if that makes a difference to hormone treatment after 

Well you should be seen by an oncologist,  no one else, that would be against NHS rules, and s/he should be aware if your problems and have discussed them in a team meeting. Check that they will be the one who checks your blood results next week as well before the next chemo, and if there is a problem and they delay it  ask how you'll be contacted as it's a difficult journey. 

If it was me I'd politely explain all the problems you've had,  ther emotional turmoil,  and mention that you don't know if you can continue on ther current regime., mention politely how other people you've spoken to have been given EC instead with fewer side effects  as their hospitals dropped the F for that reason and because of your issues would they consider just giving the EC as you can't face more if thr same. I'd ask about different anti- nausea drugs. I sounds like they worked for the first few days as you were ok but  could they give something else as well? 

Let us know how you get on,  and fingers crossed you get some help at last!