I’m not actually worried that I’ve potentially got secondaries but thought this was the most appropriate thread to post my question.
Basically, as the 5 sentinal nodes I had removed were all clear (both DCIS & invasive tumours removed) I’ve been wondering if I can expect anyone to look for potential issues in the future, or will I just have to be mindful about lumps/bumps/aches & bring them to my GP’s attention?
I haven’t seen my oncologist yet (anticipated 8th or 15th Feb appt) & appreciate that he might clear this up for me but from what I’ve picked up from surgeon & BCN, I’m thinking that, after chemo/ rads/herceptin, annual mams might be all that will be in my future.
Some posts have identified that some of you have had or know that you’re having full or partial body scans - is this because you already had other symptoms/problems or purely from the results of hystology from BC ops?
Your advice would be appreciated - thanks xx Chris xx
There was no spread to my nodes with first diagnosis and I wasn’t offered any scans. However, after surgery I became a total hypochondriac for a few months and consequently did have a complete body scan when I developed pins and needles in my legs. All I had to do was report the symptoms and ask, and it was done very soon after.
Second time I was given a complete body scan without asking as my diagnosis was more serious. I’ve been told I can have more if I ask again.
I think it’s a good sign if they don’t want to scan you but if you want your mind put at rest, it’s worth asking.
I think if your nodes are involved then you’ll be offered scans, because the fact that it’s in your nodes also means that there will be cancer cells floating around your body and there’s the potential for secondaries. If your nodes aren’t affected then it means that the cancer hasn’t escaped from your breast so you don’t need scans.
Unfortunately even node negative breast cancer can recurr as cells travel through your lymphatic as well as through your blood stream. Your individual risk factors determine your treatment plan & follow up. You should always report any new and persistent problems to your medical team and get checked out. BCC have a good leaflet about follow up. X
Hi I only had one scan when I was diagnosed (3years ago) and that was because my liver function blood test was slightly raised.The hospital where I was treated only did scans if 4 or more nodes were involved, and after treatment they only give them if you have a worrying ache or pain.
Jane, having cancer in the lymph nodes doesn’t necessarily mean they’re floating around in the body. They may hopefully have been blocked there. Not all women with node involvement get secondaries and vice versa. The percentage of likelihood is higher with node involvement but who knows where any of us fall within those stats.
Chris, the problem with scans is that can show up all sorts of things that are probably nothing. Our bodies aren’t perfect.
If you were to have any symptoms that you were worried about then they might decide to scan. Remember though that a scan is only ever a snap shot at a given time.
I think what we all dream of is that impossible ‘all clear’. As my surgeon said to me try to put it all behind you, easier said than done though isn’t it?
Just read your question again. I did have pre treatment scans but that was because 1) tumour was large 2)I had obvious lymph node involvement at time of diagnosis.
I had a couple of other scans after that due to symptoms. I had pre existing back problem and headaches that got worse during treatment so they did brain CT and back MRI.
Post treatment I’ve had no scans.
Best thing is to talk it through with your Oncologist. Ask him or her what to do if you have any worries in the future. Chances are they’ll say you can simply book an appointment to see them.
Jane72:- I know exactly what you mean about the hypochondriac blip. My friend’s brain wouldn’t accept her boob lump was just a cyst and she virtually set up camp in her GP surgery for a good 9 months with every conceivable ‘sympton’ you could think of! Cutie Pie as you avatar by the way. x
Jane, Tina & Mel - thank you for your views & experiences too. All helpful x
elinda:- I’ve always been a 1/2 full type of gal and will continue to be so, but the node niggle may remain. As you say pos or neg node involvement can still go both ways, but unless every node is tested, the mind can always wonder if any little buggers were hiding in the ones that weren’t removed!
I will hopefully put as much as possible behind me when treatment is over and I will deffo respect all of my consultants experience & advice, but it’s helpful to hear that I shouldn’t really be worried about not being scheduled for a routine scan.
My nodes were involved, sadly 20 out of 21, all removed as well as boob, but my original Breast Consultant seemed quite sure I’d be ok as my bloods were clear. Then the CT and bone scan - saw first Onc who said CT was clear but bone scan showed it had spread to my bones, saw another Onc, second opinion, who said the CT scan confirmed it and didn’t mention the bone scan (how can one Onc say CT is clear and the next not) then saw GP who said, after reading my notes on the computer, bone scan inconclusive, then unexpectedly I got a call just before Christmas from BCN (on behalf of original Breast Consultant) I’m to have a PET/CT scan on the 7th Feb as they want to find out what the calcium deposits are on my bones (at great expense it was pointed out to me, I’m NHS). I dunno, I don’t have any twinges or pain, only when I’ve had my Zoledronic Acid juice and then only minor for half a day or so but I know other ladies on these forums didn’t have pain either with bone mets. I really don’t know what to think, I’m only on tamoxifen, no chemo although I did have rads for a bit on the affected chest and scar. I’m trying not to think about it, like someone said perhaps de-nile is the best way to cope until everything is clarified. I want to make plans for the future but feel my whole life hinges on the results on the 16th Feb.
It really is a bugger, I’m usually/for the most part upbeat but sometimes it gets to me but I suppose the unknown is worse than knowing. It did make me smile when my first BCN said, its spread to the nodes unfortunately - bit of an understatement!
Anyway love from someone who is swinging from being positive, just maybe, what are the chances, by a miracle they got it wrong and it hasn’t spread, to, oh my god, its gone everywhere and I’ll shortly collapse in a heap and be carted off to the hospital to die. BC sucks!!
Oh heck, you are going through hell at present and the waiting must be awful. Roll on the 7th and the 16th.
Whoever pointed out the cost of a PET scan to you had no right doing so. It is not your fault that the supposed experts could not read the CT and bone scans. Can I just say that PET scans are very special and better that MRI’s. Let’s hope that the picture is clearer on the PET and that you have the good news we are all hoping for you.
E
My Oncologist told me that scans are not normally done when treatment is finished unless there is reason for worry. I was suffering joint pain and my eyes kept going fuzzy so I had a bone scan, CT body scan and MRI head scan.
Thank you so much for your response - if in the unlikely state of affairs everything is ok - first invitation to you to my celebrations, bit of a lonely furrow till then though.
Myfanwy - talk about instilling confidence - NOT!! It’s not as though it’s an interpretation of modern art we’re talking about here! As for the BCN who seemingly thinks you need to know, let alone give two hoots, about the cost of a PET scan - that is so unprofessional and I wouldn’t be surprised if it’s not actually harrassment. Even if it’s not, her sort of tender compassion is the last thing you need at this time.
Best wishes for 7th & results on 16th {{{{{ hugs }}}}} - Chris
Hiya
A while back a forum member suggested using a diary to note down any unusual pains, then try to forget about it. If it lasts more than two weeks see a doctor, if it doesn’t then is wasn’t anything to worry about. This seemed quite sensible to me and sometimes simply the process of writing it down helps you put it in perspective and feel like you are addressing it and not burying your head. That in turn lessens your anxiety a bit and as we know that can decrease you symptoms sometimes. I have tried it and so far it seems to help with mild symptoms and changes, but I will admit other bigger things have still sent me into a spin. But it is still early days…
Hi Midge and all
I really like your diary idea - and will do it. I am finishing treatment for primary bc today (!) and am dreading it. Have been so busy for past eight months with appointments, treatment, results etc. First follow up with Onc in 6 weeks [can’t wait].
I had a high lymphe node involvement which is a big worry for the future. I do hope that this will get easier with time, no choice, just have to get on with it. Someone on here said that bc sucks - I agree.
Myfanwy - best of luck with scans, results etc.
Nikki x
It is not always possible for the radiologists and oncologists etc to know exactly what a scan shows. That isn’t them not doing their job properly. YOu can have something very small. I had this on my first scan, a tiny lesion on the liver which they couldn’t identify. I had chemo and then a follow up scan to see if it changed. Fortunately it didn’t which meant in all likelihood it wasn’t cancer but was a haemingioma.
I think we tend to think of medicine being more black and white than the reality actually is. Pet scan is of course more sensitive and is very expensive. But why health professionals point that out as though one should be especially grateful I’ve no idea. It’s shows a marked lack of sensitivity. Lots of treatments are expensive.
I had heavy node involvement too, and finished my treatment just before Christmas. I have tried to remain positive thoughtout, as I think this b…y disease picks up on stress.
This is a really interesting thread because it poses the question is the UK’s poor record on survival rates anything to do with the lack of proper follow ups for certain groups. I fell into that group of women who had no nodal involvement and a good margin of healthy cells around the lump and was therefore deemed low for risk of secondaries. I was not offered any scans and didn’t think I needed any because my breast care surgeon and oncologist were so positive I didn’t need any. Of course, as luck would have it, eight years later I find I have extensive bone mets in ribs, spine, skull and pelvis.
If I had my time again, and I had the money, I would not hesitate in paying privately for scans. If this wasn’t possible I would go to the doctor every time I had a pain or unusual symptom that lasted more than a couple of weeks, and demand a scan.
Anyone can get secondaries even if you’re so called low risk. I’m not suggesting people obsess about it though, but it doesn’t hurt to be aware of the symptoms and go to your GP if needs be.
I was told follow ups are for checking up on post treatment recovery and checking good side, if you still have one, for new primary not looking for secondaries. Scans, tumour markers etc are not routinely offered unless symptomatic. Mammograms are the “gold standard” in this. I asked for an MRI due to lobular BC and (even though was given one at first annual check) this is not usual procedure. X