Breast Cancer Now Forum

Well I did have to have radiotherapy after all.  And it's different in 25 degree heat when you still have a breast to zap.  So I am chilling indoors today.  They let me out at sunset.    My WLE happened on 1 March after a month of trying to get over the lurgy (I got over it ok) and my recovery was very quick.  No chemo thank goodness.  No side effets with the RT either except itching from day 2 and an unrelated heat rash. So-another week of this and then a week  of rest and I should be good to go.  On holiday.   ... View more

Feeling delirious....I've got a dx which is Adenoidal Cystic Carcinoma which is really rare- it's tiny and in situ so they will take it out leaving the breast almost unchanged in appearance (apart from the scar.)- A WLE with a week off work and probably no follow up treatment. Chemo doesn't work and radiotherapy- well, the ONC doesn't want to know. I have my op on 17 Feb, pending successful outcome of heart tests. As the Surgeon said- if you had to have a cancer in the other breast, this was the one to pick! Now I've got to get my strength back. Having a beer tonight to celebrate. ... View more

In the waiting room for the second time in 3 months only this time I haven't had a reassuring phone call that the biopsy was negative.  Seeing the surgeon and BCN tomorrow and expecting a set of options for treatment.  It finally hit me this evening when I was making dinner and I had to sit down and have a drink (in this case ginger ale!) - at least I only have a few hours before I know what is in store for me.  I spend so much time at the hospital with my husband I'm sure I will adjust to treatment again!  But apart from this and having pneumonia after Christmas life is good!  ... View more

It was good to hear from you Namaste.   I am having a little holiday from the Anastrozole.  I went to see the surgeon last month - a new one brought in to clear up a backlog of annual appointments for NED people.  She was very understanding and she said talk to the GP.  So I did and and he said- let's take you off for a bit, see if it makes a difference not having the side effects (as if!) and then you can have the Arimidex (that's the patented drug I was put on by the hospital which I had no S/E's on).  That was Monday.  On Tuesday I happened to have my annual checkup with the cardiologist and he was very concerned about my side effects- the muscle pains can also be caused by heart meds so he was right to be concerned....but I am picking up that my surgeon must have written a strong letter to the GP which the careful cardi picked up on as he had clearly studied my notes- makes a nice change when that happens!  The upshot is that despite the heat I haven't had to nap during the day and I have bags of energy for the stuff I choose to do not just work and the housework.  And in my medicine box I have a small box of Arimidex which is worth £1903!!!  I'm rich!  I start taking them Monday.    My cardi also took me off statins cos I have had bad leg cramps which is an s/e and I start again on a half dose in about 10 days so I really do feel as if school's out for the summer.  Which it is.  This respite just in time for a little grannying.  Which reminds me- how are you getting on Marie?    PS the cardi confirmed that the MRI scan shows damage "consistent with chemotherapy damage" .  The oncologist keeps bleating about "not having had a strong enough dose"  but I've looked through my diary and the only times they told me they reduced my dose was FEC2 and TAX3, both times after neutropenia.  As far as I can tell the rest of the time I was on the full thing.  I wish I had asked for a copy of the letters from the consultants to the GP- all I've got is the one from the breast surgeon after the op.    ... View more

That Alpha stuff sounds good but I need to check whether it's ok with the meds I'm on-is there anywhere on line that tells us?   ... View more

Sue glad to meet you - it's not what we signed up for is it?  But we are still here which is the main thing.  I wouldn't hesitate to make the choices I made- though I wish I could have had the Onco DX test to see if chemo would work for me.  I have been following all the new developments in treating malignant melanoma which is what my OH has got and I'm sure immunotherapy will be the thing in ten years time, and people will look at us with admiration for what we put up with! ... View more

So good to hear from you Jo - your job sounds so interesting.  I can just about work 5 hours a day now which I guess is progress! Onwards!  Upwards!     ... View more

Cardio rehab- it's exercise which focuses on regaining cardio fitness. lots of emphasis on quads and arm strength.  Well-graded so you work up to it slowly.  I could not have done it without my personal walking plan- 20 minutes a day of gentle strolling.  My problem now is finding the energy to do things-that's my next project and it's probably more about my Anastrazole for the BC than it is about the heart meds, although I do have a sticky time with leg cramps thanks to the Statins. ... View more

Hi folks   I'm back.!  In the spring. I sent a series of letters to cardiologist and oncologist and this led to extra appointments and a real dialogue which makes me feel as though I am being treated properly.  The cardiologist is 90% sure the condition is chemo related. Then in April, out of the blue I had chest pain, was admitted overnight for tests (how embarrassing!-after two hours I was fine!) and diagnosed by the ward doctor-a chest man-with Fibrosis caused by the Radiotherapy.  Which probably caused the pain.  No evidence of heart attack.   Then the results of my MRI (In March) came through- i have EF of 50 which is what I had after chemo.  Best of all, I can walk up the hill by my house without having to stop every 20 feet.  This enabled me to collect for Christian Aid this year which is something I try to do every year.  I'm being cagey about setting targets as the med are a bit of a white knuckle ride- so many side-effects.  Trying to deal with the general feeling of malaise and exhaustion.  But feeling so buoyed up in myself.  I'm allowed to do cardio rehab now.  I'm the only woman in the class who is overweight.  Work in progress. Feeling really positive.  Reading lots of positive things on here so hoping you are all keeping well? ... View more

Here I am!  I would love to but we have to go to a cocktail party at the Oncology Clinic bang in the middle of half term which knocks the whole thing out.  Hoping you all get together though! ... View more

Feeling positive.  OH had his onc appt today and the consultant felt his glands and they have shrunk to nothing after only 2 months on Dabrafenib.  Not dreading the next CT scan as much as I did the last couple.  I've shed another of my jobs but very busy anyhow, but in a planned, restrained way.  I have 5 heart meds plus the anastrazole.  I am so glad I learned about shopping around different drug manufacturers as I have found a combination of tablets which don't completely knock me out.  Hoping you are all enjoying this warmer weather.(?) ... View more

Just to say that I have seen the cardiologist who is 90% sure my heart problem is due to the chemo.  With the new meds my strength and stamina have grown and I am now in a cardio rehab course and feeling great.  My husband's cancer has advanced and he has secondaries on his lymph glands and he will have treatment- probably immunological (but it is the same drill as the chemo ie hours of waiting, step up to the bar for an infusion, then sick days and two reasonable weeks before the next medical cosh.  Only this one will probably not just be for 6 months.  We don't know yet.) The waiting with someone is worse than the waiting for results for oneself.  Over on the Melanomates facebook page they call it "scanxiety".  The good news is that he is fine in himself and if he hadn't had all these tests we wouldn't know he was ill.  Hoping you are all coping and enjoying this lovely early spring weather we've been having 😉   ... View more

Same hospitals?  Or have you got to cover the countryside again?   ... View more

As a postscript to the last post, just to say that the ONC told me that I didn't have enough of a dose of Epirubicin to cause heart problems.  So my chemo could not have caused my problems.  Feeling baffled. ... View more

I've just been to see the oncologist-saw the Senior Reg.  She had had a look at my records and said I was never on high enough levels of Epirubicin to cause toxicity.  So they think it is a mystery that I have heart failure.  I suppose I might be one of these people whose cancer directly causes the heart problem.  I did have a chest infection at Christmas but never had a temp and didn't need antibiotics, so I doubt that caused this.  So I have to go on with the treatment and put the cancer treatment out of my mind- not an easy thing to do, especially when my OH may be having chemo before long.    Yes we do all need some Christmas cheer- it's been too dark outside! ... View more

Aye, Ready in the sense that I know OH won't have his second op between now and then.  But he might have a scan.  Keeping very calm about it and just trying to get things out of the way so I can enjoy it when it happens.  Christmas I mean.    I'm having a good spell with the meds and getting some stamina back though it's a long haul. I;'ve been told I can have cardio rehab even though I don't strictly speaking qualify as I haven't had a heart attack.  The person who teaches it has given me more tips in the five minutes I spent on the phone to her than the whole set of doctors I/ve been seeing.   Marie how are you?  And the rest?  I have a gig at the hospital with the ONC tomorrow.  Routine but I will discuss my future tratment now I'm a heart patient.     ... View more

Waveylocks - well done!  And thanks for the link to the leaflet.  Patients need to tell doctors what to do in the new NHS it seems.   What is all of this whining among professsionals that this is a rare complication of cancer?  I was told when I signed the consent form for chemo that the incidence of heart problems in chemo patients is 1 in 10.  You think they would see a lot more cases. Do tehy miss them because they are not very skilled to look out for them, or because they don't want to?  Or because they hate causing harm to patients?.  But also I think a lot of chemo patients have got so many concerns this is not very high on their list, they don't realise what is happening (I certainly didn't).  So that juist emphasizes the importance of including us in the list of people who need to have routine ECG's and echos..   A ray of sunshine: I'm only 68 but I can remember a time when breast cancer was missed by professionals and where it was thought of as rare.  We all know what raising awareness in doctor and patient can do- Breast cancer is now the most common but is also the best-known cancer.  As I have explained on another thread here, my husband has secondary melanoma (not a rare condition- it's number 5 on the cancer league table- which was missed by the GP-it is an easy thing to overlook, apparently) and the provision for him is really scrappy- we're having to go 30 miles away to get him under a surgeon as the local one has gone two years and not been replaced-this is to do an ANC; the wait for that op here for BC patients would be at most 6 weeks and he's been waiting almost 2 months.  Also the palliative chemo he needs isn't available as it is all pharma funded.  So we really are blessed with the provision we have for BC!  It's just that he's got the wrong condition.   Now when it comes to cardio, I think you we have crashed into a real muddle- I am not at all pleased with what we have here- the delays, poor communication etc.  I am probably getting the treatment I need but people like us who are battling exhaustion and fighting for breath should not have to fight like this. Well that's enough of a rant.  Back to my basket to write a few more Christmas cards.  We've got the whole family coming; I'm not sure I want to add hospital visiting up and down the motorway to the list of Xmas outings!   ... View more

Nicky do you reckon they will use the rest of the interview on one of the radio 4 medical programmes? Possibly the one with Mark Porter?   ... View more