I have only just discovered this forum, wish I had found it sooner - you do think that you are alone with IBC.
Was Dx July 08, 6 cycles FEC then Mx followed by 4 x Tax (this seems different from the treament most of you had had) 30 x Rad. I have just finished Herceptin and have seen the oncologist this morning.
Am just a lttle suprised that follow ups do not include any scans or even blood tests for tumour markers and liver function. As treatment does seem to vary from area to area am just wondering whther any of you are in the same position and what your hospitals do as routine follow ups?
Ta X
Glad you’ve found us. The ladies on here are a mine of information. Being able to talk to people who’ve been there has been a great help to me.
I was diagnosed in March 09 and just finished my active treatment (3 x FEC, 3 x Tax, mast, Rads) at the end of December so have yet to have a routine check. First one is due in March. I must admit I had expected to have tests done at the end of my treatment and was surprised that I didn’t. There seems to be an assumption that they are only needed when you’re symptomatic. When you have experienced the speed with which this disease can move it’s a worrying strategy. I try not to constantly look for symptoms but it’s hard not to attribute ordinary aches and pains to the cancer.
I hope life is being kind and you are well at the moment.
we were diagnosed about the same time… i was diagnosed late May 2008 and had 4xac, 4xtax, mx rads and now on tamoxifen… like yourself and jan i find it weird that they do not seem to keep an eye on our cancer markers etc when i know of other people in other areas who do get their’s checked for other types of bc…
i had several scans last year for various concerns… mainly because i was still being very breathless although that seems to have finally calmed down… and then i started getting changes in my other breast… an mri showed benign changes starting to happen so i had a second mx… let’s face it they know hardly anything about how ibc happens as it is so quick etc so i and my team decided it was best to take no chances…
i am going through yet another new scare at the moment… i’ve gotten some weird bumps below my scarline… they look like pimples that are not coming to a head properly… i wish jackie was around so i could ask her more about the early days of her skin mets but i think she is getting over her recent op… i have phoned my bcn and they are sending me out an appointment letter to see the onc and will take a biopsy and scan if they think they are suspicious…
i think one of the worst things is having to always be on your guard even about things that normally you would never have given a second thought like this…
Hi D, I was also told by my oncologist that there will be no scans etc as follow up once treatment has finished.
when I asked him why, he said “You could have a scan and 4 weeks later have another tumour”
Very reassuring, Not!!!
It’s very confusing. No wonder we all live in fear of a recurrence.
take care, Debbie. xx
I just finished active treatment in December like Jan B. I had an oncologist appointment booked at the time for 6 weeks from the end of radiotherapy and this was preceded by bone scan (due to secondaries in bone) and abdominal CT scan (due to possible secondaries in lung).
Due to relative stability, I now remain on Tamoxifen & bisphosphonates and have an oncology appointment for three months time which will be combined with clinical follow-up for the drug trial I’m on (ZICE). I’m not sure what triggered the appointment; the cancer or the trial!
I called the onc’s secretary and asked if this appointment too should be preceded by at least a CT scan and she is following it up…will let you know…
I live in France and have found various discrepancies even with my treatment and care, and yet we are led to believe that France is one of the best European countries for cancer care.
I am currently having an issue with my hospital which is a centre of excellence because they believe that I should only have a yearly check up, which I find pretty disappointing. However I must say that during my chemo and operation, rads and Herceptin the treatment and care was excellent but the follow up is not.
I’ve seen my GP today and she told me that with a serious cancer like the one I had (grade 3, stage 3 IBC) I should be seen at least every 6 months. Since I finished Herceptin I have only seen an Onc once, and my next appointment is not until July - a year after finishing Herceptin. When I saw my Onc in December, he told me he wanted to see me again in April, before I have reconstruction so somewhere along the line this appointment has been pushed back.
They don’t do any scans or tests - even tumour markers - and only do a yearly mammogram. I am lucky in that my GP will do a CA 15-3 every 3 months because I ask her to, and this has steadily been rising since last year, although it is still in normal ranges.
So, it seems we are all the same no matter where we are.
Theresa, I’ve sent you a PM - sorry to hear you have another worry.
Hello Peacock,
I think we were diagnosed around the same time but have followed different paths, I dont post much but I can say that I get about the same follow up, I see the surgeon every year but my appointment to see the oncologist is’nt until January 2011 which will be 2 years after I finished chemotherapy. What is the point in that? Follow up care is sadly lacking as far as I am concerned. I feel abandoned and have no direction in how to help myself to feel better.
I finished active treatment for IBC last summer. When I asked about scans I was told that they don’t do them because if you have had a scan and then have a problem there is a danger that you don’t report it because you consider yourself to be OK.
I now have 6 monthly checks with the surgical team but they have emphasised that I can always self refer back at any time if I am worried about anything.
I also feel abandoned but when I have my sensible head on I know that what my team say makes sense.
Hi Ladies,
I’ve been following you’re thread and one thing that concerns me is that, if you are scanned regularly then surely they would pick up any changes earlier than somebody having symptoms,thus treating the problem sooner.Lesleyx
Hi Lesley i think one problem is where to scan… given that breast cancer can recur in brain, lungs, ovaries, liver, bones etc… so short of doing a full body scan and full bone scan it is hard to know where to start… must admit though i do wish that more of us could have the blood cancer marker tests that carole’s gp let’s her have… as at least then you would know they were going up and could start trying to find out where…
IBC (inflammatory breast cancer) spreads so quickly and often to multiple sites as we have seen this year with Pash and Sharon and last year with Shelly… and you can’t help wondering whether knowing there was a problem more quickly would also mean treatment could start sooner and so mean less organs involved…
Thanks to you all for your experiences. Raywitch I am really concerned about your oncology appointments, to not see one for two years is not acceptable and I am sure is against the National Service Framework recommendations for Breast Cancer Care for all breast cancers not just IBC. I would strongly suggest that you see your GP and insist on a second opinion. Once again thanks for your comments so far X
I’m not so sure it is good to be able to have the tumour markers done, as mine have been rising steadily since Feb last year, it begs the question “why”? The medics here do not seem to take much from them anyway, and have even told me not to bother having them done. The normal range is anything up to 32, my highest when having chemo was 28 and my last one was 27. Not really very reassuring.
I will be having another one next week, as it is time for my other blood tests so I usually just ask to have this done as well so at least I am keeping an eye on it. I don’t know what I will do if it is over 32, and hope I don’t need to find out!
My oncologist herself phoned today bless her! She said that my 3-monthly follow-up appointments were driven by the drug trial that I am on and that provided I was “stable” (i.e. was showing no symptoms of any further spread of secondaries) that period might be extended.
She also said that CT scans were not generally done prior to these appointments but only to further investigate anything “suspicious”. Like a couple of you have mentioned, she also said that if anything became worrying in between appointments, I can go straight back to them - not nec. via my GP.
Does make me feel a bit vulnerable - like I know what anything “suspicious” might look or feel like??? It’s like looking at life over one’s shoulder isn’t it? Oh well- I’ll try & make a conscious choice not to do so & just get on!
I had my tumour marker results today, thankfully down from 27 to 22 so that is a bit of a relief.
On the down side though it shows I do have a problem with my thyroid, so will probably need some treatment for an underactive one. Will see what the endocrinologist says on Monday.
Hi Bahons, hope everything is fine with you, and all you other ladies too.
Good news about the markers Peacock. Long may it continue. I hope you get the thyroid under control soon too.
I had a meeting with my boss this week and I’m planning to go back to work from 1st March on a phased return. Can’t honestly say I’m looking forward to it but if I leave it any longer I’ll never go back. At the moment I manage the domestic stuff (housework and dog walking)but only because I’m not working. Don’t know how I’ll manage after a full days work but I won’t know if I don’t try, eh. Wish me luck.
Good luck on your return to work, just make sure you don’t overdo things.Delegate anything you can. I think all most of us want is to get back to as near normal as we can after treatment.
Hello all,my active treatment finished after rads in July,Im sick to death of moaning but Ill be as brief as poss. Nerve pain drives me doolally,Im on Pregabalin but it hardly helps,I wake up so many times in the night when I change position I get up feeling more tired than when I went to bed. Ive had 8 months on Femara with the accompanying joint pains in hips,knees and worst of all my shoulder on the op side,there are so many things I cant do with my arm,it affects everything I do. Im now on exemestane and have noticed that my good boob(which has been sore since my 3rd week on Femara)has become even sorer,even my armpit feels sore but Im not in panic mode yet because I had a clear mammogram in December. Ive got an appointment with my onc on March 3rd,any ideas on what I can reasonably insist on? His stock answer is “you have to expect some pain after all you have gone through”,but Ive had no scans since my C.T.for rads planning and no blood tests taken since I was in hospital having my MX. My hubby is quick to point out that I look a picture of radiant health and have put a stone on so I cant possibly have anything wrong with me. Any ideas of what to ask for?
Cheerio, love Mags x
they look like pimples that are not coming to a head properly… i wish jackie was around so i could ask her more about the early days of her skin mets but i think she is getting over her recent op… i have phoned my bcn and they are sending me out an appointment letter to see the onc and will take a biopsy and scan if they think they are suspicious…