I know I’m lucky to have a very diligent medical team who like to scan regularly so that they can deal with anything before it gets out of hand - but if I’m honest it really feels like a double edged sword. Went to see the Prof yesterday, and he said how do you feel?. I said great, and he said good, come back in three months, and next time we’ll do some scans. Now I know it’s sensible, because we all know that cancer is often silent, but unfortunately, I’m already thinking what if something is revealed next time. Oh dear, sorry to moan, but it’s late and that’s when the scary stuff starts going through my head.
sorry to keep harping on about this book, but have you read susan loves breast book? she discusses in great detail recurrances, scans, emotions etc. in some ways its a bit scary, but it does but things into perspective.
i cannot imagine what it is like for you needing to be checked every six months. you must never be able to forget it. I know that nobody is ever safe, but it must be possible to get time off for good behavior
it’s so tricky isn’t it - we want to “know” but we want to “get on and not be a patient all the time” and we know that scans carry some risks too. Even going from 6 weekly research trial to 9 weekly regular system scans is causing me some anxiety - so hope you do settle down to this good news of not needing too many scans and can find ways to keep up your confidence. Anxiety is so draining and the emotions of scans are mega - thinking of you and encouraging you to see this as good news before too long.
Best wishes
Hi
I agree it is very scary to not have (as I call it) a picture of what’s going on. I initially had 3 monthly CT scans before, during and after chemo. All well and good and an excellent response to chemo so basically the ‘picture’ got better 
After that I was onto AI’s which I was worried about how effective they might be. A CT scan after 3 months again showed all well and good. I was then moved to 6 monthly scans and I really did feel nervous. However my onc, like yours asked how I felt and, as I was (am) doing fine there was no reason to scan more often as I am likely to notice any changes (well, let’s hope so!). Since that last scan I have had the same conversations with my onc who, again, has said there is no reason to scan. However I have insisted on having one later this year (after my hols as I can’t deal with the scanxiety before them!) just so I do get a new ‘picture’ of what is going on. I am realistic to know some changes may have happened and I really would like to know of them before I actually do ‘feel’ them, fingers crossed though that everything is still stable. When my onc did check my records it’s now 2 years since my last scan so I have missed out on a lot of worrying about scans and results and over that time have got my head around trusting my instincts and my onc. Plus, I suppose, I haven’t had all that additional radiation during those 2 years so that must be a positive
Nicky x
Hi - I’m a real “scan-a-phobic” and spend plenty of time avoiding discussing them with my onc, who knows how I feel about scans and is quite happy to not overdose me with them. I know this is easy for me now, as I’m relatively well (almost 8 years since my bone & liver mets dx), but I’m sure I’d be the exact opposite if/when the mets have more impact on my life. A dilemma, but I’m happy with current arrangements (scan only if there’s a problem). xx
Just want to say two things:
(1) Marilf, you are an inspiration. Reading about someone living with liver and bone mets for 8 years is very encouraging.
(2) When I last had a scan in March, they said the skull mets appear to be dying off, and there is no evidence of disease anywhere else, so I’m inclined to think I’ll have scans if I get symptoms. But my Oncologist does routine six monthly scans, and my head tells me this is probably sensible - so hey, ho.
As I say, it’s a double edged sword, it’s good to know/get reassurance, but worrying in the interim.
Hi lemongrove I think id feel just the same in your shoes re the scans. It is a double edge sword your right, you want that your team are keeping on top of things yet the same time the dread & anxiety that goes with each scan you’d rather do without. Thats GREAT news about the skull meds
Keep on keeping on hun I think your truly amazing
Mekala xx
Had a letter today from oncologist telling me that following my last check up 3 months ago that the disease is stable.My first thought was how does he know without a scan.
I have increased pain from bone mets, but onc just wanted to increase pain meds and to let him know if it got any worse.I know my management plan is for scans as necessary when any symptoms change.
Being very cynical I was not sure if this was for my benefit or because Sussex NHS Trust are cutting back on everything.
This onc is new to me and seems use blood tests to monitor how things are going.As I never had this with my previous onc the results are a bit confusing to me.The results last time were normal,increased CA15-3.I have no idea what that means and have not got the results from last week.My onc seems to do it backwards,go for checkup and then he decides plan of action.Makes sense to a point, but i would have thought having a blood test prior to the checkup would make more sense and then I am not left wondering what is going on.
I would really like regular scans because I have a locally advanced mass in the axilla and I cannot be sure how it is progressing.I had 9 lots od chemo and 35 rads to shrink it, so would hate to think I went through all that for it to start increasing in size.I am pushing for surgery to remove it, but not having a great deal of success because of secondary spread.
Great news about the skull mets Lesley, and I agrre with you Marif is a great inspiration to us all.
Good luck to all who are waiting for scan results.
Linda x
Linda my Oncologist doesn’t think blood tests are reliable enough, and that is why they do six monthly scans. As you know, I started off being treated in Sussex, and it was fairly apparent that budget was an important factor in the treatment they offered - and that’s why I voted with my feet. My feeling, for what it’s worth is that you should be insisting in scans, to find out what is causing your pain, and treatment to sort it out, but if your outfit are anything like the one’s I dealt with, you may have to do what I did - go elsewhere.
I do think the ‘whatifs’ are hard to live with especially when we are already living with 2ndaries and know it can take-off again at any time. I expect we are all different in the way we can live with that uncertainty. For me to a certain extent time has helped. My oncs & I have an understanding. I don’t get scanned unless it is absolutely necessary and I can ask for them if I want them. I went several years without CT Scans, and don’t have bone scans too frequently either. I don’t mind the MRI scans because I am very aware that my spine is damaged throughout and needs a close eye kept on it. I don’t get much room for negotiation on MUGA scans but at least as I am on herceptin permanently and my heart generally behaves they have agreed 6 monthly MUGA scans. That is the only one that I get anxious about because if my LVEF falls too low they will stop the herceptin and that scares me.
Dawn
xx
Hi Dawn,
It must be a worry to you that the Herceptin could stop working. Will the new treatment Affitoxin be of help to you if that happens?
E
Hi All, was reading all your post posts about scans and totaly get what you mean about scanxiety, this is something that is a bit of a worry for me at the mo. My latest scan showed that the tax I was on along with herceptin hasn’t worked and I have some progression. Unfortunately the policy at my clinic is that if you have any progression at all while on herceptin they stop it, even though they admitted that sometimes for certain people herceptin works better with different chemo.
I have been offered two options, either xeloda on it’s own or take part in a trial where I will get xeloda plus herceptin and a fifty fifty chance of new herceptin type drug pertuzamub. Feel like I have no choice other than the trial as I want to stay on herceptin.
Anyway as part of this trial I will have scans every 9 weeks and although I know that in some ways this is good I do worry about the safety of having so many scans. Also it’s a terrible ordeal every time I go with them trying to find a vein for the dye, last itme it took an hour and a half (not kidding) of them poking me with needles, ended up black and blue from my wrist to crook of my arm. the thought of having to go through that every nine weeks fills me with dread.
Sorry for the big rant but feeling a bit anxious and a bit low today.
Pumpkin, I’m very sorry to read your post. I had no idea that people were refused drugs/treatment on the basis of scans, and I cannot begin to imagine how worrying that must be. My feeling about scans is simply that on the one hand I don’t like living between scans worrying about what the next one will reveal - but on the other hand, I don’t want to refuse scans, and then discover things have progressed too far for treatment. I think if I was on a vital drug like Herceptin and my continued use of it depended on scans showing a stable result, I would be inclined to refuse the scans (I know there is another lady on here who is on Herceptin, and only has scans when she feels they are necessary), but maybe my view is very simplistic.
What I find confusing is that your clinic stops Herceptin if there is any progression at all. I’m no medical expert, but surely, if your cancer has progressed, it must be because your cancer has developed cells that are no longer Her2 receptive. So surely, you now have cancer that is both Her2 receptive (and responds to Herceptin), and new cancer cells that are not Her2 receptive (and do not respond to Herceptin), so why don’t they continue with Herceptin with the addition of treatment to treat the non Her2 cancer?.
Would it be possible for them to biopsy the new metastases, to see what their receptors are?. At least then they would have an idea of what they are treating.
I really hope you can sort things out.
Hi lemongrove, thanks for the response, I had read about cancer changing status. With regards to stopping herceptin they said that that’s their policy( probably down to money as I know herceptin is very expensive) and that is why they encouraged me to take the trial as at least i will get xeloda and herceptin and possibly new drug pertuzamub, I think maybe the xeloda will treat the cancer whether her2 or not,I know there are other ladies on here that are on it that are not her 2+, I know I am er+ too. They also said that different chemos in combination with herceptin provide different sinnergies and some work better in different people than others. Hope that all make sense.
There has been no mention of biopsies, mets are in spine and tiny spots on lung.
It was actually me who pushed for the scan after four treatments of tax and herceptin as I wanted to make sure it was working, good job I did. I kind of feel like I have no choice but to take part in the trial as I want to stay on herceptin.
Pumpkin X
Hi all
Yes, scans are awful with the hunt the vein and quite painful if the vein isn’t very good! Before all this happened I always thought scans were painless, like ultrasound when you are pregnant.
I agree with Lemongrove, yes, Marilyn you are an inspiration for all of us. IT is also right that as more time elapses from my diagnosis the more optimistic I feel about continuing for a good while yet. I will be 2 years post secondary diagnosis in October this year and am already over 4 years since my primary - where does the time go when you are having fun!!!
Enjoy the remainder of your weekend girls!
Sue x
I’m afraid this whole business of stopping herceptin on progression is down to finance. We were posting about this late last year on this thread:
breastcancercare.org.uk/forum/viewtopic.php?f=92&t=28612
but there is quite a good article that discusses “Continued use of trastuzumab following disease progression in metastatic breast cancer”
A couple of quotes from it:
“There is a great deal of controversy and practice variation in the UK regarding the continued use of trastuzumab at the time of disease progression; this may be because there is uncertainty as to the mechanisms of resistance and whether this is partial or absolute.”
“NICE estimate that annual savings of £11,717,000 in England and Wales, equating to a saving around £21,500 per 100,000 population, could be realised if trastuzumab was discontinued in women whose disease progresses. This saving is based on an estimate that there are currently 777 patients (or between 1 and 2 per 100,000 population) are being treated every year with trastuzumab for disease that has progressed outside the CNS.”
If you want to read the whole thing it is at
I did find another article and I think have quoted it before on here but as usual! can’t remember where. But I think it stated something about the Royal Marsden not going along with this recommendation. Again it really is a postcode lottery and I just don’t know what you do if you fall under a hospital that is under pressure to reduce costs and chooses to go along with NICE guidelines.
Dawn
xx
p.s. apologies to lemongrove as this has strayed a bit off topic.
No Dawn , you haven’t gone off topic. If people are having treatment stopped, or changed on the basis of scans that is another factor that contributes to the anxiety that scans induce for many of us.
However, I’m going to go a bit off topic now, because I find it quite worrying that doctors are not only stopping treatment on the basis of scans, but using them to potentially initiate a whole new drug regime. Obviously, one would hope that the treatment being offered is appropriate, but unless doctors biopsy the new metastases, and establish if these have changed their receptor, how do they know the treatment is right?. I mean Pumkins cancer is also oestrogen receptive, so wouldn’t endocrine therapy be sensible?. I don’t mean to sound alarmist, but these drugs are not smarties, and surely they shouldn’t be prescribing them on the basis of guesswork.
Dawn thanks for posting those links, interesting reading, it deffinately does feel like it’s all about saving money, and does seem to be down to whichever hospital and whichever oncologist you are under. You would think if it is NICE guidelines then everyone would be treated the same. Am I right in thinking that you have been on herceptin for a long time despite some progression? Have you heard anything of this new drug pertuzamub?
Lemongrove the original treatment plan was to put me on femara after my tax, but as this new treatment will be ongoing that won’t be happening as can’t have it while on chemo. Also I was on tamoxifen for three years after primary diagnoses which didn’t work.
Back to topic, everyone, what are your thoughts on the safety of having so many scans? (every nine weeks while on trial) as that does worry me a bit. Not to mention the fact that if at any point the scans show progression I will be kicked off the trial which will definately mean no more herceptin.
It makes me very sad and angry that our treatment always seems to come down to money, and treatments across the country appear to be so inconsistent.
Pumpkin x
Pumpkin, sorry to ask what may seem silly questions, it’s just that I find it worrying that your doctors seem to be changing your treatment, without establishing why you have had progression. I would have assumed that if you are both Her2 + and oestrogen + you should have Herceptin and endocrine therapy (I assume they can give both together). I understand that Tamoxifen may not have worked for you, but there are other types of endocrine therapy, and if you are post menopausal you could have Letrozole (Femera). The thing is if your cancer is also oestrogen receptive, could the fact that you have not received endocrine therapy explain the progression?.
I think it’s dreadful that this post-code lottery exists, especially when the decisions made can have such a serious consequence. Would it not be possible for you to ask to be treated at the Marsden, seeing as they seem to have a different policy?
Hi Lemongrove, not a silly question at all, you’ve actually posed a question I will ask my onc. I just assumed the chemo would treat that regardless. I’m in scotland so protocols are probably different here. I try to read up as much as I can about it but gain valuable information from the wonderful women on this site such as yourself. I have been following all your posts regarding cyberknife, not something we have access to up here.
Pumpkin x