confirmed secondaries in the liver, bones and lung, HELP !

Public Archive
1

Hi all, I posted here a few weeks ago saying was going for a scan. Got results today, not great, I now have secondaries in the liver, lung, and bones - its been about five years since I had a mastectomy and everything that went with that.

My Oncologist is a lovely woman and she is truthfully hopeful that she can stabilise things although I am under no illusions that it is curable, its not.

I was wondering if anyone is in the same boat and can give me some encouraging words.

Many thanks for reading this.

Jackie X

2

Hi Jackie,

I’m sorry to learn of your recent diagnosis, but you’ve come to the right place for support.

While you are waiting for your fellow forum users to reply I have put links to some of BCC’s publications that you may find useful.
You may also like to join in with the Live Chat sessions especially for those with a secondary diagnosis which is held each Tuesday evening 8.30pm - 9.30pm for some extra support. I’ve also put you the link to that for you to look at.

Secondary Resource pack:

breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/2

Living with secondary BC:

breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/131

Secondary BC:

breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publicationId/6

Live Chat: breastcancercare.org.uk/server/show/nav.745

I hope some of this helps. Kind regards,
Jo, Facilitator

3

Hi jackie,

I am so sorry to hear your news. You must have been devastated. Of course you are right that this is not curable - I think all of us with secondaries know that. But for many they can have some quality of life despite this.

I am not in the same position as you - as I have had multiple bone mets for 7 years now. There are several members here with other mets who I am sure will be along to offer their support. It sounds from what you say as if you have a good oncologist and I hope you will find good support there too.

Thinking of you and offering (((((hugs))))

Dawnhc

4

Hi Katiebelu

So sorry you have had to join our group, but you will find a lot of support from the ladies on this site.

I had primary bc in 2002 - lumpectomy, lymph nodes removed (all clear) followed by radiography. Was discharged from breast clinic beginning of 2008 and told that I would have to be extremely unlucky for it to return.

In December 2008 I had a bad cold and what I thought was laryngitis as I had a croaky voice. Did not improve and eventually went for chest x-ray and was told that I had secondaries in the lungs and liver. I had never even heard of secondaries and was totally devastated. Like you, I was told it was not curable but is treatable. I have started a course of FEC chemo (have had three, and three to go) and my onc has said the nodes in my lungs have shrunk a little so that is encouraging.

I have found out a lot more since being diagnosed in April, and from initially thinking oh well, this is it, I have come to realise that there is a lot of treatment out there and a positive attitude does help. One good thing that has come out of this is that on this site I have met such a lot of lovely ladies who are very helpful and encouraging, and I am sure they will help you too.

Good luck with your treatment, and I hope it is comforting to know that you are not alone - there are a lot of us who know exactly how you feel and what you are going through.

with all good wishes, Trixie

5

Hi Katiebelu
I know the news is devastating, i was diagnosed with secondaries to liver and bones in Oct last year, having been clear for three and a half years, my first reaction was oh god i dont want to die,but then the news sank in and my onc was like lets get started with the treatment, i had 13 weeks of chemo (not sure whether its better or worse second time around cause you know what to expect!!)so far i am ok feeling pretty healthy and have just come back from a weeks holiday in spain which was lovely.
i checked on this site and there are a number of great women who have been living with secondaries for a good few years which is reassuring. I know i am gonna have to have more chemo its invevitable i am just hoping for big gaps between them! in the mean time gettin on with day to day stuff and am planning next holiday!
its so hard to get that news that its come back, so unfair to get it even once, how much worse that you get it again but there is treatment for it, i keep saying "i’v been through it once I’ll do it again and will still keep fighting it.
big hugs to you,
xxxx
Caz

6

Hi Katiebelu

I’m really sorry that you have had to join the “secondaries club” but am sure that you will find a lot of information and support here. I think the first few months after secondary dx are very difficult. I was diagnosed with secondaries in the liver just over 2 years ago (nearly 5 years after my primary dx). It has been a real emotional rollercoaster since then with several times when treatments have failed and things have progressed, but also there have been times when I’ve been NED (no evidence of disease) on scan and feeling relatively well and able to lead a “normalish” life. I often think of these periods as being my “new” normal life which does include blood tests and hospital visits but also is a life where I can get on and do many of the things I want to (including carrying on working).
The hardest times for me have always been the sort of limboland you enter at the beginning (and each time a treatment is failing)when you don’t know what the next treatment will be, whether it will work well or not, and what impact the side effects might have on things. So I am sure (if you are like me at all!) things will seem better and more under control when you have started treatment - do you know when that will be? And indeed what treatment your onc is proposing? You sound as if you have a good relationship with your onc as well which is brilliant, as you ideally want someone who is sensitive to you as a person.
Do let us know how you are getting on and ask any questions you want - there’s bound to be someone who can answer!

Sending you a big cyber hug

Kay xx

7

Hi Jackie,
just want to say welcome to our club, sounds a bit daft as none of us want to be in it!
We are a very friendly honest bunch and will help each other through the tough times. Plus it is good to see what treatments are being given and are available for us.
I had sec diagnosed as I was coming to the 5 year mark. I have them in liver and bones. Liver is a mess and as fast as they get rid of the uggers they seem to come back but it is 5 years so I am doing o.k.ish.
Bones are controlled by byphosphonates, infused every 3 weeks. A couple of years ago I could not climb in the bath, 4 months after starting pamidronate there was a vast improvement.
My advice would be when you can, do. This is a cruel disease that robs us of the important things. When you are felling good get on with things. When you are feeling rubbish and tired rest.
Hope you soon get started on a treatment plan and wish you luck.
Love Debsxxx

8

Hi Jackie,

Sorry that you have to join our club, but you will get lots of support. I have been living with lung secondaries for over 2 years, now have a bone secondary, but continue to enjoy my life. It is a huge adjustment to make and the initial shock is terrible, but you will find a new normality once you have a treatment plan.
let us know how you get on.
best wishes nicky

9

Hi everyone, thank you so much for your replies, hugely appreciated.

Its all very hard just now, just got the bad news yesterday and things are moving very fast. I have a bone scan on Friday, 1st chemo next Wednesday… Best that its happening this way though I think.

My treatment plan is over 8 weeks I think. Taxol once a week, Zometa once every 4 weeks, and herceptin every 3 weeks. After the 8 weeks I think I will be scanned again to see if anythings changed or stayed the same. One good thing is at least its not all a first for me, been there once before and wore the dreaded bandana…

My Oncologist is very hopeful that she can settle things down, and she did say that if one lot of treatment didnt help there is always others to try.

I havent felt well really in about two months, lost a stone in weight and just the last week or so I have had lower back pain - I was beginning to wonder if it was all in my head and I was just being lazy. Oncologist did say that no matter what happens these drugs will make me feel better which is great as I’m off to Skye in a couple of weeks with some family and the 5 dogs so I’m certainly gonna need some energy for that…

I’ve gots lots of support from family and friends which is really good but I dont want to ramble on too much so many thanks again, and I will post again soon.

Jackie X

10

Hi Jackie, I am sorry you have had such a huge shock of being diagnosed with all these secondaries. I truly hope that the treatments start helping you soon. I am on taxol / gemcitabine and to be honest it’s not so bad, am managing to work full time throughout treatment other than chemo day. Hope yours goes well too.

Feel happy to ramble as much as you like, that’s what we are here for! Enjoy your trip to Skye, it sounds like a stunning place. I have 3 dogs and they have been such a help to me to get through every day, I am sure your guys will do the same for you.

Sending big hugs

Nikki

11

Hi all, back at work today, I wanted to come in and face everyone get it over with.

Back has been very bad today though, it was just a bit tender up to now but god the pain I had earlier, I bent over to pick up a file and it just went, it was excrutiating, never felt pain like that in my life. Phoned Doctor so picking up an emergency prescription for painkillers later, hopefully that will sort that out.

Hi Nikki - apart from the cancer crap we have in common, I love my dogs too. I have a German Shepherd who is the biggest wimp you would ever meet, his names Clyde, a staffy called Tara who would lick you death, and Murphy a staffy cross, crabbit little swine, but he is eleven now so I guess its allowed. Clyde is 5 now, and he was a massive help to me when I had cancer the last time. I dont know if I’d have got through it without him to be honest. I dont have a partner or any children so you can imagine how much he means to me. I used to take him to appointments in Edinburgh with me, obviously he waited in the car but just knowing he was there helped me. Animals are so theraputic its amazing, like Cezar Milan says, they live in the NOW, not in the past, and they dont worry about the future, we can def learn a thing or two from them. Enough about the dogs, hehehe.

Thats good that your able to carry on working Nikki, I hope to be able to do the same. Its an office job I have and I work in a bar at weekends so here’s hoping.

Caz, love your attitude, I hope we are both lucky enough to have bigs gaps between treatments.

Kay, you and I are about the same, its just over 5 years since my first diagnosis. How did you cope when they told you some treatments had failed, I think I will find that very hard to hear…

Debs, again the five year mark… I like your name for them, uggers, hahahaha. Thanks for the advice I will take it on board, if I feel rubbish I will have a sofa day.

12

just wanted to add my support and say me too -just 5yrs since first diagnosis then feb 2009 bone secs needing 2 ops then may 09 repeat scans showed more ribs ,spine and lung.was devastated no proper treatment plan yet as biopsy inconclusive.They are fairly sure its a new primary tumour -but need to be sure -have appt on weds at another hospital to see about some surgical procedure to get lung biopsy then they can decide which chemo l will be getting.Why is life so flipping hard!keep as positive as possible thats the best we can do and dont give up hope -we never know whats round the corner.sharon x

13

Hope the bone scan went ok yesterday, Katiebelu. And really admire you for getting into work so that you have faced everyone. Hope they are supportive. I worked throughout weekly Taxol just taking the day off I had it. Did reduce my hours though and I was lucky that I could work from home some of the time. So hopefully you will be able to continue working too if that is what you want to do.

You ask how I cope when treatments fail. Won’t say it’s easy and it’s not dissimilar to the secondary dx really - depends a bit on whether I’ve been aware that things weren’t going so well or not. I just find I take some quiet time to get my head around it, avoid those conversations with others about “what will happen if the next treatment doesn’t work?” etc and eventually (usually after started the next treatment) feel I’m getting some balance back into my life. Also plan a lot of treats!!

Good luck with the chemo next week - let us know how things are going.

Kay xx

14

Hi everyone, bone scan was ok but its just to give my oncologist a better picture of whats going on I think so I’m not having to go for results for that one, thank god, had enough results to last me a lifetime…

Back still sore but did get painkillers and they are helping - I have convinced myself not to stretch now so that I dont bring on the pain but if I did stretch I might be ok but I’m too scared to try it now haha… Hoping when treatment starts they will get me feeling better and a good bit more mobile. Just under my chest is not very comfortable either feels tight and it hurts when I do pretty much everything like breathe deep, cough, laugh, sneeze - I am really praying the drugs kick in and give me a new lease of life.

I see I am getting zometa too which is for the bones, once every four week, is it just me but I have to wait 4 weeks for that and my bones are sore now. I know oncologist knows what she’s doing but I thought I might have got that one to start.

So many questions eh, never ending.

Regards to everyone, take care, Jackie.

15

Hi Jackie
sorry to hear you experiencing discomfort…hopefully as you say it will improve once your treatment commences. I think we both have the same ONC.and are attending the same treatment unit. I commenced chemo for spread into two of my abdo lymph nodes, I also have bone mets, last Wed. It is the first time I have had Chemo. So far I have survived…felt a bit tired over the weekend but no nausea or sickness. I went but to work on Monday. Here’s hoping I continue to work but if I cannot I will not put myself under any pressure.
Hope you start to feel better soon…who knows we may bump into one another at the hosp
Take care

16

hi there
hope your chemo goes well and hope you start the bone strenghthner i call it bone juice (cause itseasier to spell!!)starts soon, can you ask your breast care nurse why your having to wait to start it??
big hugs
Caz xxxx

17

Hi 02towalk

I am going to Dunfermline and hopefully my treatments will be on a Wednesday, went this Wednesday but could only get the bone chemo as my temp was too high for the taxol. Got taxol today though so hopefully I will lose the discomfort soon. My Oncologist is Dr B (lady) she’s so nice and is never doom and gloom, I guess there will be time for that if all the treatments fail, god forbid… It was long day today 4 hours in the chair with all the pre meds, water, then finally the chemo, I kept nodding off, going to ask to be near the tv next time, keep me awake.

Best of luck with your treatment.

18

Hi jackie - wishing you well with your treatments - i have mets to lymph,bones and liver - i found that zometa had a bad flu like effect the first time but was then ok - i have had 18 weekly taxol which i found ok to tolerate and worked through it - so good luck … love jayne x

19

Hi Jackie
Yes we do have the same ONC but I not attending Dumfermline. I hope you are not feeling to bad after your treatment. I had a short course of zometa and it appears to have been worked worked well on the bone met in that I have had no progression of bone mets in 2 and half years … pity about the new progression else where. Like yourself and everyone else I will do what I can to keep things at bay for as long as possible. Signed up for the 'Look good,feel better session 'at the Maggies Centre. Never looked good in my life so that will be a first!!
Keep in touch

20

Hi Jackie,

I just wanted to welcome you to the site too,
Sorry you’ve joined us though.

I have secondaries to bones and lungs not liver and have never been ill with cancer only the treatment!
I am now 4 years on.

Good luck with your treatment,

Tess.X