Following Mx, ANC, Fec-T and rads (now on Tamoxifen) for Stage 2, grade 3 IDC with 23/25 nodes involved I have my last appointment with my oncologist tomorrow.
What should I ask him?
I’m terrified that I may have undiscovered secondaries due to my high nodal involvement. I have had a recent bone scan which has showed no change but I’ve just read a post on this sight from someone whose bone scan was fine but lung and bone mets showed up on their PET scan.
Should I ask for a PET scan?
My onc has said in the past that they don’t do routine scans unless there are symptoms.
Surely the earlier these things are discovered the better?
Starting to feel really wobbly again after a period of relative calm :¬(
Just wondering when you were dx? I had 6 monthly check-up’s with my onc until recently and I was dx in 2006! Maybe these are new changes now just seeing your onc once a year and I just haven’t caught up yet! Love xxxx
My diagnosis was in January and surgeries in
February and March 2011.
I’ll be seeing my surgeon every year too and they alternate so that I’ll see someone every 6 months. I can’t remember how long that arrangement is to go on for.
I’ve gone private through my husband’s health insurance.
What happens at your check ups?
Do they do blood tests or anything/
I was diagnosed in 2009, I have only just gone onto yearly check ups. I have a blood test before the oncology appointments. I assume this is done as I have had no problems since treatment finished, I had MX, 6FEC-T, 25 rads and 18 herceptin. I had 2/25 nodes infected.
I have been told I can contact either the breast clinic or oncologist if I feel I need to in between
I was diagnosed Dec 2009 and I too fear “going solo”.I feel I completely lack confidence in my ability to rationally interpret my symptoms. My oncologist tried to give me an annual review appointment 12m on from June 2009. He did note my reaction of blind panic so relented and agreed to review me end October 2009 - and then Im to " go solo". A junior Dr requested a Ca153 January 2010 and of course it was raised at a level of 57 -normal range is 30. The consultant was not pleased that this test had been done, and now there is a definite reluctance to monitor the Ca153 level - which to me is unreasonable. My point is that the blood test is done now, is abnormal, and I am symptomatic - low back pain, R upper abdominal pain sternal tenderness,and constantly worry about brain secondaries. There, -Ive actually said it now - I haven’t voiced all these fears to anyone before.
In my region contact with the Breast Care Nurse ceases at commencement of chemotherapy - as apparently the patient then develops a relationship with a chemotherapy nurse.
Not in my case -at least 12 different nurses over 24 chemotherapy sessions- I have terrible veins and felt I was to be avoided at all costs! not a good experience -4 tries at venepuncture was my cut off for asking for someone more experienced.
No option of follow up with the surgeon either. No relationship with my GP as I had not been to a GP for 20 yrs prior to my diagnosis with breast cancer. I feel as if I am going to be just cut adrift.
hi all… it just never ends does it ?? i was diagnosed may 2010… fortunatly i only had to have radiotherapy after surgery … i had my first mammo post cancer back in june… that was clear …but before i went, i had never felt so ill with worry … i was physically sick … couldent stop crying, shaking, and just wanted to run away and hide i thought i was going to have a heart attack, my heart was thumping so bad… my next appointment with my onc is feb next year … and my next mammo around june… and i know by the end of january i will be a jibbering wreck … why cant we wake up one day and feel happy… why cant we begin to live our lives again… without the fear. .every ache pain twinge we have will we always think… oh god its come back for another go at us … perhaps as time goes on things will be easier for us all … perhaps we will learn how to cope without the safety net of the hospital appointments and scans etc … i so hope we do … we deserve to have peace of mind angie xx
Oh Winnie2, sounds like you’ve had a really hard time of it.
I had a Ca153 test done by a chemo nurse when I had one chemo at home. It wasn’t routine but was a bit raised at 41. My onc agreed to do another one later on during chemo which came back as 29.
During my chemo I developed pain in one hip so I had bone scan and another Ca153 which had gone up slightly to 30. My onc said it’s very variable and not a particularly reliable test but said that some people’s results are in the thousands which might reassure you a little.
The other thing is that once I’d had my bone scan come back clear my pain magically disappeared!
We’re in such a difficult position aren’t we, trying to balance the magical ‘positivity’ with realism and fighting our corner re investigations?
As angiem says, it would be bliss to begin our lives again without the constant worrying.
Thanks for your advice GIJaneH, I’m going to push for a PET tomorrow if I don’t get a jolly good reason why not. I’ll let you know how I get on…
Thank you hope444 for starting this thread.
I tend to bottle up my worries. To read about my concerns in the writings of another does help.
I`m now going to push for a "scientific review at the end of October - as opposed to a “cosy chat” review - the latter being of absolutely no benefit whatsoever.
You’re right winnie2, a cosy chat is nice but not helpful.
I find it really difficult to challenge ‘authority’ but as our lives may depend on it I must do it for the sake of my children.
Hearing of others in the same situation is such a help as bc is a very lonely place.
Take care,
Kate x
I do understand your worries. My appointments with the Onc have now gone to yearly and it is a scary time.
It was explained to me that they don’t routinely do scans and blood tests post treatment. Pet scans are expensive and not many hospitals do them. However, this isn’t the main reason. Each time you’re scanned you will be getting additional radiation - so it makes sense not to keep doing it.
Also a scan is only as good as that moment in time. If you have a PET scan tomorrow, will it stop you worrying 6 months down the line? If you’re anything like me, probably not.
Blood tests can easily be affected by other things going on in the body. So while they can be helpful during chemo as an indicator to see if it’s working, one Onc explained to me that it just caused a lot of anxiety. If you had a raised blood count what would you do - start undergoing a barrage of tests and scans which might be completely unnecessary?
I wish there was a better and more simple way to detect cancer. I am veering towards trying not to worry so much and getting on with my life. The constant worry really impacts on quality of life.
Have you thought about trying the post treatment telephone support group run by BCC. I did this and found it very helpful, I think they still run it. Basically you have a conference call every week for 8 weeks and there is a nurse, a counsellor and other women who’ve also undergone treatment. You might find it helpful if you feel you’re being cut adrift a bit.
I can see the reasoning for not doing scans and blood tests routinely. You’re also right in saying that 6 months down the line I may get the wobblies again but I really feel that if I could have one PET scan which came back clear then I would have a ‘clean slate’ to start from.
I think my 23 nodes are the thing that really freaks me out.
Also with the fact that I had surgery before chemo there’s nothing to show whether the chemo I had has worked on my particular cancer.
Had I known about neoadjuvant chemo at the time I may have pushed for that as it would have been great to see the cancer shrinking/disappearing.
Thanks for telling me about the post treatment telephone group. I didn’t know about that and might give it a try as long as it’s not in the afternoon/evening when my children are at home. I don’t want them to see/hear me without my ‘brave face’ on!
Like you, I’m trying not to spend the rest of my life worrying and I’m doing lots of exercise and trying to eat healthily in the hope that this will boost my chances of survival. Having trouble cutting down on the wine though. I find I still need it to help me relax in the evenings…
the support group is excellent. Mine was in the evening for an hour and you do need privacy so you can discuss things openly. Might be worth giving the helpline a ring and asking about it though.
Re neoadjuvant chemo - whatever you do, there are pros and cons. I had a CT scan prior to treatment which showed something on my liver - they didn’t know if it was cancer or not. That was a very worrying time and they decided to give me chemo first to see if it shrunk (or grew) in the interim. Fortunately it stayed the same which meant they were as sure as they could be that it was not cancer and was more likely a group of blood vessels.
Having chemo first was both good and bad. The FEC did shrink the tumour (which was very large) and lymph nodes quite dramatically so I understand what you mean about not knowing when you had surgery first. The thing is though that having chemo first caused a huge amount of problems for me as it badly affected my wound healing and caused delays in the rest of my treatment. I also sometimes wonder if I would have developed lymphodema if I hadn’t had all those problems.
It does seem a shame, if PET scans are better, that we don’t have those routinely at the start of our treatment. Have you rung the helpline to talk it through with them? Would love to know how you get on if you decide to request one.
It feels to me like a huge psychological battle to move on from treatment and I’m not sure any amount of scanning etc would give me the reassurance that I actually want.
Elinda x
In response to Elinda’s suggestion about the telephone support group I am posting to let you know that the service is no longer running, however, further support is available via the One to One support service and the 'Moving forward information pack contains information relating to post treatment help and support. You can read more and order a copy of the ‘Moving forward’ pack here:
Lucy - what a shame that is no longer running. I thought it was fabulous being able to talk to other women like that and having the nurse and counsellor support too. Where I live is quite rural so hospital run support groups were too difficult to get to on a regular basis.
Kate - I hope I haven’t confused matters even more! I really feel for you and I hope you have a better day tomorrow.
Hi
It just seems to be a problem that we don’t get enough monitoring or support. My BC was/is not good so I’ve been monitored well. Last year, I was warned (by a junior doc) that I would probably not get the annual mammogram now because of funding. The surgeons, oncologists, radiographers etc I’ve seen have been really fabulous but funding is a big issue now.
I’ve been told that I should keep checking for lumps but when I asked about secondaries etc, the answer was just “let us know if you feel unwell.” I have a full-time job, I go to bed at 8pm every night and I’m suscepible to colds etc. I’m a teacher so I get lots of kids breathing germs on me. I don’t know when I’m meant to say I feel bad as that is about two thirds of my year.
We have the best docs but NHS funding is not great at the moment.
My GP is great and very quick to send me for tests (thankfully). I guess we just need to keep reporting all our problems even when we think it’s all OK.
K
I think that’s right Kathy but then also it’s difficult to have any semblance of normality when we’re going to the hospital every few months. My surgeon had a very long chat with me earlier in the year about moving on.
I do think alot of it is about the quality of time we get in appointments. When the doctors have time to go through all our worries/problems and say why they’re not worried then it’s reassuring. I like things to be explained to me fully.
The other problem is all the side effects from treatment such as hormonal changes, medication problems, post surgical problems etc which make it hard to feel normal at any time. I’m 20 months on and still get incredibly tired - I can’t go back to work - yet I’m told that’s okay given all the treatment I had and that the tamoxifen and the pain I have in my shoulder (due to the surgery) will be a factor in that.
I think the doctors look out for some particular red flags when it comes to symptoms. So, as you say Kathy, all we can do is keep reporting them.
Kate - if you do have any particular concerns at any point, I’m sure you could ring the Onc’s secretary for an appointment.