A surprise

Hi,
Well this disease still keeps surprising me!
Having lost a dear friend Jackie recently to Sec BC, I’ve just been to my appmt. with onc. and am still “shut down”, lung mets still stable and bloods good. 2 Years on from my second lot of chemo and now 17 years from initial BC.I am officially a slow developer. Anyone else around?
I suppose I felt I couldn’t still be doing the stuff I do if the cancer was progressing, but it is still good to be reassured, albeit temporarily.
I would have shared my good news with Jackie, but hope Manchester cupcakes, and Pippi pick this up, And Good luck to everyone else who has an appointment before Christmas. My thoughts and support will be with you on line.

Well done Hazlenut and congratulations on your mets being shut down :slight_smile: It’s what we like to hear about! I am 2 and a half years post bone mets diagnosis and, touch wood, still stable - but a scan is looming before Christmas - yikes. Keep the good news coming.
Nicky x

Hi Hazelnut

Go girl! Congratulations on your shutdown-ness, long may it continue. My mother recently sent me an article about a woman in the US who had been living with bc for 17 years +, can’t remember now if that was 17 yrs since primary dx or 17 yrs since secondary dx, obviously there’s a big difference! Anyway, guess what I’m trying to say is that, although bc does take a lot of women far too soon, there are many who keep going … and going … I do hope you will be one of those.

And it really does give the rest of us hope that it is possible to survive …

Best wishes.
Alison

Brilliant news hazelnut - may we all be slow developers!

finty xx

Hi Alison

I’ve seen posts from that American lady on other websites and it’s 17 years with secondaries/mets. She comes back to the web every year to let everyone know she’s still doing well. It looks like she’s one of the 2% who are cured, really cured, of secondaries.

Having said that, there are a few women on American sites who have had secondaries (sic), not primaries, really metastatic breast cancer, who are still living with it after over 10 years. You can regularly find ladies who have secondaries (sic)who have lived over 5 years after diagnosis on several American sites too (not just Americans, English speakers from around the world).

The reason is have added this (sic) thing is to emphasise that these cases really concern people with secondary, advanced, metastatic, stage IV breast cancer and NOT any other condition. In the year since my wife’s diagnosis I have noticed some confusion so I want to make it clear what I’m writing about.

Did you all see the article about a possible future treatment for cancer, including breast cancer today? Scientists at Cambridge may have found a way to shut down the protein in cancers (including breast cancer) that stops the body’s immune system from recognising cancer as a threat to the body and thus eliminating it. There seem to be a lot of promising approaches to this &%§ing disease so that we can have real grounds for optimism!

So hang on in there everyone! Scientists are literally working worldwide, round the clock on cancer during the working week. Some of these approaches are bound to pay off - and soon!

Oh yes - before I forget - what about the diabetes drug METFORMIN? I’ll put it in another post!

Hallo Charlie Ray and everyone.
I have been reading these posts since my diagnosis in December last year. Have had 3 types of chemo, am just resting from Xeloda and lapatinib now. I posted some months ago on the anyone else with liver mets forum, and had some incredibly supportive responses, but I haven´t been able to find my way back to those discussions since.
Since original diagnosis the only thing I have wanted is to have the tumour removed, but the doctor convinced me that chemo was best to begin with to try and shrink the lump. Over the following months we have switched chemos, and the doctor has sent me for more tests, always saying that there “may” be something bad in my liver, then he dropped the bombshell recently that maybe in my bones as well. I am living in Spain, although I have no problem with the language, it is quite possible that things have been dumbed down for me. What I did feel, was the fear he was causing me. But always “maybe”, so always hope and never sure. Then I switched hospitals to get away from this very negative doctor, as I didn´t feel he was helping me. I ended up seeing him again, as the hospitals are close and double up on staff. That was when he dropped the bones - question mark. So I got quite angry, and demanded that he call the other doctor, who concurred that I should have more tests, one for the liver, one for the bones, and another for the chest. Yesterday I went for the results, and saw the other doctor who I want to see, and he said good news - the tests are all clear! So I am amazed, and happy, and relieved, and a different person all of a sudden. He says he has to talk to the surgeon about a mastectomy. I said I´m delighted. I don´t know whether I ever have had mets - all I know is that the original doctor has kept me in a state of fear for 10 months. Now I can see light at the end of the tunnel. I have to express my sincere admiration for every single person on these forums. And though I realise the shadow will never totally disappear, the immediate fear has gone, and I can breath again. I wonder at doctors and their attitudes, and how they affect us. I have been visiting a natural health practioner with a quantum scio machine throughout, and he is the person who has given me hope, and made me determined not to let the doctors frighten me.
Love from Bess

What a great result for you Bess; I am really so delighted for you. It is so so scary for us and it is just fantastic for you not to have that worry, even though as you say it never quite goes away.
I remember that, following a regional recurrence 2 years ago, I had the tests and was convinced that I had secondaries (as I think was the surgeon) - and I felt I’d won the lottery when they said they were clear, even though I still had a long haul ahead with more surgery and chemo.

So well done you!

love, Mo

Hi,just logged on and seen CharlieRay15’s post. Good on you for being so very clear about Sec. mets. It is v. important.
I don’t do other sites and am infrequent visitor to BCC, but so very encouraged re the american ladies and survival rates.What are they on I wonder??!!
Good wishes to your wife,and thanks fortaking time to post, lung mets, who needs 'em?
Hazelnut

Hi everyone

Hi Bess

It’s really good to read that you have found a much better doctor with whom you feel comfortable. We had a similar experience here in Germany initially. My wife wanted a mastectomy with as many affected nodes as they could see removed. She was told - several times and with a German friend once to make sure we hadn’t misunderstood - that it couldn’t really help and she would definitely get lymphodema! We felt this was a real insult to our intelligence! They already knew we had internet access so it was plain dumb to suggest what they did. Lymphoedema is a possiblility but not a certainty!

Anyway, that’s why they got binned!

Her current hospital is much better, although maybe it hasn’t got the big reputation of the last one. What is really good is the radiologist. Sofie had her latest CT scan on Monday. How long do you think we had to wait for the results? 10 minutes! As has been the case every time so far, the radiologist had us in as soon as could see something and showed us that everything was OK on his monitors, gave us hard copy photos and sent us on our way! The first time Sofie had a scan with him he told us that a secondary diagnosis is hard enough without having to wait for scan results. It can be done!

Hi Charlie Ray
That´s amazing to get results so fast. I had to wait, but I am not at all averse to waiting, I see it as the state I´d like to be in, without negative results,and death sentences.I saw the surgeon today, and he says they will call me to give me a date for the operation very soon, certainly within the month. But he also said that the possibility of it returning was very high, which put a dampner on my general mood of breath easy, since the good test results. So they can´t do a reconstruction at the same time, have to wait a year or so to see if it reocurrs. Aagh!
Anyway, I would like to ask any advice on preparing for the mastectomy, and how to aid recovery. I have a 2 and a half year old son, and his father lives 350km away, so I need to organise myself. They have told me I could be in hospital from 3 - 7 days, and recovery could take between 10-21 days, and I will have to go to the hospital to change drainage deposit.
Any advice would be great.
Bess

Hi Bess

It is great to get results so quickly - it’s an attitude thing rather than anything else, it’s not as if they’ve got any special equipment or anything. Radiology has got the image of being a specialism for doctors who don’t really like contact with patients and maybe that’s the difference where we are!

With regards to the mastectomy, there are more specific threads about this where you ought to be able to get some specific advice, but provdided everything goes well you’ll be surprised at how quickly you’ll recover. The key is that the stomach muscles aren’t affected so you should be up and about pretty quickly, maybe even the day after! My wife had our daughter by caeserean and that needed much more time because of the abdominal involvement. Of course, everyone’s different, but my wife had her mx on 26 March and on the evening of 3/4 April she was able to sing in the church choir for the whole Easter service - which meant standing continuously for about 5 hours!

Our daughter’s 5 now and my sister in law was staying with us for a longer period then, which was a big help. So with a two and a half year old you really need some help until you feel yourself again. Ideally your help would be open ended so you don’t feel any pressure to rush yourself, but of course this all depends on what and who you can arrange. But in any case, all the best and I hope everything goes well!