Just got back from the hospital where I got the results of my latest scan
They have found a 5mm node on my chest wall. I have already got secondary spread in my hip
The onc said it might be an error by the scanner but on the other hand maybe not
I have now got to wait 2 months -so till January to have another scan to confirm /deny this
Will this mean more chemo? i don’t know
I don’t know how I am going to get through these next few months. I am sitting here crying my eyes out. Am very scared and frightened
If anyones had this or has some positive stories to give me I’d love to hear them
Jools
Hi
I was told six weeks ago that I had liver secondary and on Monday was told that I have it in the right lung as well.I have been devastated it seems that this is never ending .I was started on chemo for the liver and they have now changed it to something else as that was not doing any good.I also cant stop crying but then on the other hand I do get very angry.
There are plenty off people that have very positive story’s on here which has given me some hope
Maybe they will do the same for you
mel
jools
I am so sorry to hear these new developments why do you have to wait 2 months for another scan? Can’t you get them to bring it forward?
You can deal with this you have managed with your bone problems. You’ve got to fight this. As you know I have it all over me and I am really well at the moment.
I would really like to meet with you I know we have talked about it before but perhaps it would be a good time now. It might help to talk to someone.
I will PM you
love cAroline
Hi Jools and Mel…I think it takes a long time to get your head round a secondaries diagnosis…I was diagnosed stage 4 from the very start in 2003, I think I was in complete shock for a couple of months and even now it can still feel unreal at times. Take Care and keep posting…this is a very supportive forum…Belinda…x
Deare Jools and Mel
I am sorry to read that you are both going through such a difficult time at the moment, you may find it useful to know about some of the other support services from Breast Cancer Care for secondary breast cancer:
Firstly, there is a telephone support group, the aim of the group is to give you the opportunity to talk privately and confidentially to other people around the UK with similar experiences, the next group starts on the 27th Ocober. Discussions cover issues such as relationships, work, money, living with uncertainty, treatment, as well as everyday life, for more information click on the link:
breastcancercare.org.uk/content.php?page_id=11306
There is also a secondary live chat, this is Breast Cancer Care’s online chat facility where you can talk to others in real time, it’s from 8.30 pm - 9.30 pm on Tuesdays. It is facilitated by an expert moderator and a nurse who are on hand to point you to sources of help and information, for most people, the chance to talk to others in a similar situation is what counts, again, for more information follow the link below:
breastcancercare.org.uk/content.php?page_id=6218
The following link will take you to Breast Cancer Care’s publications about secondary breast cancer which you may find useful to read, there is also a DVD called ‘Living with secondary breast cancer’ which has been recently introduced, you can order these via this link or by contacting our helpline on 0808 800 6000:
breastcancercare.org.uk/content.php?page_id=5258
I hope this information is helpful to you both, please don’t hesitate to contact us either via the website or the helpline for more support and information.
Kind regards
Lucy
Hi Mel and Jools
sorry to hear you have both had rotten news, it is such a shock and starts a roller coaster of emotions. I have secs in liver and bones and really did not think I would still be here 41/2 years later. There are lots of different treatments that can extend our lives but I know it all seems rather scary at first.
Jools I would ask for another scan sooner rather than wait 2 months. Earlier this year when my liver was on the verge of packing up I had 2 scans in 8 weeks. This showed 60% shrinkage.
Good luck to you both with your treatments I know it all gets very confusing so my solution has been to make notes which for me has proven to be invaluable.
Love Debsxxx
Awwwwwww Jools (((((hugs)))))
I dont know what to say - such a scarey place.
I think as others have said, to try and have the scan brought forward if you possibly can.
Good Luck to you too Mel
Love and best wishes
Anne xx
You must ask why you have to wait so long for the next scan. Yes push for earlier scans if it is a waiting list issue and offer to travel to another hospital if yours doesn’t have the capacity to take you.
I am hopeless at waiting and won’t even wait a week for the results of my scans, I ask my onc if I can have a early appointment to see him so he can give me the results with the minimum of waiting time and my onc gives me the result of a telephone conversation with the consultant, before he gets the formal written report on the scan. The waiting is still awful but at least there is less of it!
All the best
Blondie
5 mm is tiny in cancer terms. Chemotherapy works best when cancer is growing rapidly. A wait and see approach, though agony in the waiting, may clinically be the best thing…talk this through with your medical team.
Really sorry you are going through such hell.
best wishes
Jane
Jools - I’m so sorry to hear about this. I hope this next bit makes sense as it is supposed to be supportive but worried you might take it the wrong way.
I hope you are the person I met in Guildford -by that I mean you have met me and you could see how well I was despite my widespread secondaries and that although I have had a lot of chemo I lead a happy and full life. Of course, I have my ups and downs and do spend a lot of time being upset and worrying about the future and bursting into tears at the wrong moment.
When I was first told I had secondaries in sept 06, both hubby and I were very tearful and I felt my life was over - it’s now over 2 years since I was told that and I’m still here. I had to wait for 3 months to get my secondary spread confirmed and it was a horrible summer waiting to find out. Not sure what is worse the waiting or being told it is a secondary.
I know it is horrible waiting 2 months to see if this node is a secondary but I think it is better to wait and see and get a more accurate picture - 5mm is so small that it could be an error and for the onc to make an assumption it is cancer and treat you inappropriately would be wrong. It could be an error or an infection. Somehow, you need to get your head around it and try and put this thought away in a box so you can have a wonderful christmas and new year.
I can’t remember if you are hormone pos because if you are and it does turn out to be a little nasty b***** then a change of hormones might be all you need.
I don’t know about more chemo and a small secondary but I think if it has grown into a nasty in january then they would probably offer chemo.
I have found all the chemos I’ve had since having secondaries have been far more tolerable than FEC or taxotere and most of them don’t cause hairloss which somehow became so important to me this time than when I was first diagnosed. So even if it is the worst case scenario the other chemos do not seem to be so hard as the ones they give you with primary bc and lots of people have long periods of remission so don’t need more chemo for a long time. I hope these people answer you.
If you are the same person I met in Guildford then you know that my cancer is extremely aggressive and unpredictable and what has happened to me is unusual. I had an abnormal area near my aorta for 2 years before it turned into cancer so you might find that in january that this node hasn’t grown and they will rescan you.
I’m not sure what is worse - knowing it is a secondary or waiting to find out if it is or not.
Like Carolinew, I think it would be a good time to meet up as I have found it so much easier to talk to people with secondaries than other people even those that I’m close to. There is a special bond between women who have secondaries as they understand all the rollercoaster of emotions. I would take up the offer of meeting someone with secondaries and probably it is best to see someone you have met before or had contact with via PMs or emails. have met before or had PMs with. If someone offers and you feel comfortable about meeting that person then do it. Nobody will take offence if you feel better to talk/meet with one person and not another - the most important person is you and by the sounds of it you need to talk to someone outside of the oncology department because it is often the little odd things that keep you awake at night and I’m sure any of us with secondaries have experienced what you are going through just now and would be happy to meet you.
Have waffled on as had huge dose of steroids as had my weekly taxol today but good news as my chest xray looks so much better than in july and all my liver tests are normal so really pleased and I can eat anything now after living off pureed food for many months so even now I am still getting good news and am able to do so much more than I could.
There are so many women here who have had a recurrence/spread and had a treatment and it has gone away. Unfortunately, it means they often leave the site so you don’t get to hear the good news stories just the bad news ones.
I am really happy to meet with you if you feel comfortable about it but I honestly won’t take offence if you don’t take up my offer as my cancer story is not the sort you want to hear (but on the other hand I have plenty of experience of treatments and symptoms of secondaries and the worries about children). If you want to PM me and I think we have communicated before so if you feel happier doing that then that’s an option. Or you can just tell me to go away and that you don’t want to meet me or PM me and as I said honestly I will not be offended.
Thinking of you and really hope you sleep well and treat yourself to something and if you are feelig low go and see your GP or onc. Use this forum to rant and cry we are here to support you.
Love Kate
Sorry to hear your news and well can well understand your devastation.You’ve just had a scan, so having another soon will achieve nothing,so you really will have to sit tight and monitor how the tumour behaves in the first instance. It is tiny, and that at least is a comfort.I guess you could ask to have another after 6weeks or so…but that’s close to the 2 month mark anyway, so as far as possible, try to carry on as normally as possible in the meantime, if you can do so.(Hugely difficult, I know, but not impossible!)
There is a logic in waiting a couple of months, and this is relatively similair to what is happening with me at the moment. I have mets to pleura, liver and bone, and completed 6 cycles of combined taxotere and herceptin, continuing now with herceptin…while “We wait and see”. The tax was succesful in shrinking the liver tumour but had little or no effect on the pleura. Like you I was anxious to crack on with more treatment,in the hope of getting a response from the pleura, but my onc wants to wait and see if the disease at the moment can be classed as stable, and we can hold off further treatment for a while.He’s of the opinion that we should use chemo as sparingly as possible, and hard though it is, I tend to agree with him…I’m saving up the big guns for as long as possible, so to speak! It’s a hard strategy though, no doubt about it.
In the meantime, I feel well physically, and emotionally have resolved not to let this dominate my life before it has to do so.Obviously, at the momnet every ache and twinge has me thinking “what’s happening?”, but again am trying to adopt the pragmatic approach of realising that most aches are just that, and not necessarily a sign of the disease worsening-and it’s possibly this attitude which keeps me sane at the moment!
I hope that once you’ve assimilated the news, that you’ll find a way of coping that works for you. We’re always here if you need a shoulder, so please don’t hesitate to share your fears. Please try to to trust your onc (if you have had confidence him until now), and realise that he wouldn’t expose you unnecessarily to danger. If he feels that a delay in treatment is justified at the moment, then there will be a good reason for it, hard though that may seem at the moment. Take care,x
sorry to see your having more problems ,the emotions you are feeling are perfectly normal .im going through similar to you ,i have had left mastectomy and have liver scondaries .having had chemo etc .i now find myself witing yet again for another scan on right boob as have suspect area .(i had lobular ) have just had mamogram and xrays ,ctscan is next wed ,then results from oncy on monday next ,feel like ive been hit by a bus now as resighned to the fact ive got liver secs and doing well and now this new blow with right breast ,all we can do is wait and see ,its
never easy ,somedays i think im going round the bend i try to keep busy and reading some of the posts by others who are years down the line after secondariy diognosis keeps me going .hoepall does well with your treatments etc .lynn xx
First of all big hugs.
When I had my first PET-CT scan after the biopsy that showed that my cancer was back , it showed that it was in a lot of bones, and some lymph nodes in my abdomen. There were also a lot of small suspicious nodules in one of my lungs - this really scared me. For some strange reason I feel that if it is in my bones and more “contained” then I am somehow better off!
However, my onc. decided for me that I should not worry about it, and it was probably nerve endings or something else innocent. So I decided that is how I would think about it. Then at my next scan 3 months later, everything had shrunk significantly, EXCEPT for these susupicious nodules! So they had to be nothing, as they couldn’t realistically remain exactly the same!
I hope that little good news story has helped you a little .
I wish you all the best.
Penny
Dear Jools
I think we met at Guildford, can you ask for an MRI scan as well, sometimes a different scan can give more clarity. I am still in shock from my recent discovery that my cancer has progressed, it’s a horrible place to be. Do let us know how you get on
Best Wishes Kathryn
Hi Jools
I’m so sorry you’re having to go through this and I can sympathise completely. In July I had a CT scan which showed two 5mm nodules, one in my liver and one on my adrenal gland. The onc said he couldn’t rule out that they were mets but wanted to wait a couple of months before scanning again. My head was all over the place. I tried miserably to put it in a box at the back of my mind. Three weeks ago I had another scan and then waited 'til last week for the results. All clear! Cysts! I had one hell of a celebration.
So it needn’t be bad news. I know it’s difficult preparing yourself for bad news but hoping for good.
Hope you manage to put it in a box and put it away so that you can enjoy the next couple of months and Christmas.
Good luck
Mal