Hi All
Had a reminder to book an appointment for a mammogram and with breast surgeon.
Do we still do this ? I have been scanned so many times now- it seems a bit pointless, but then on the other hand?
Interested to hear others thoughts on this.
Catherine
Hi Katherine
We have mammograms every year now, that is what I was told.
Anne
Hi Katherine
I think we should have mammograms regardless. My first tumour was in my left breast which was hormone receptive and had spread to my left shoulder - i was given tamoxifen and a jab to shut down my ovaries and had 6 monthly checkups. I then had a second lump appear on the same breast and my consultant agreed to take it off. I asked nay begged him to take the right one off too but he wouldnt so i asked for a mammogram on the right breast. To cut a long story short they wouldnt do it because i was having half yearly checks so as far as they were concerned i was being monitored but i kept on and on and eventually to shut me up (i think they thought i was nuts !!) they did - what did they find but another of the buggers not one but two actually - this time they were’nt hormone receptive - further damage to my bones had already been done so it was chemo for me.
I hate to think what would have happened if i hadnt kept on - never got an apology from them…nothing and have been mulling over whether should take legal action… need to get my body sorted out first !!
Just because we have secondaries doesnt mean we should be treated any different - i think some of these hospitals think we are not worth the time or money and it really makes me mad…sometimes i wonder if they consider us to be less of a human being just because we have secondaries
Rant over… sorry bit of a touchy subject this for me
Hi Domino
A quick question for you.
I had a new breast lump picked up on a routine mammogram following 1st dx in 2003. I was due to have a mastectomy as it was the same breast (had lumpectomy 1st time round) and they took CT and bone scans before op to ‘check’ Low and behold they found it had gone to my hip so I’m now being treated for secondaries with chemo, biphosphonates and, after chemo, hormone therapy. The question is did they go ahead with an op to your right breast? I’m being monitored during 4 months of chemo with CT scan and mammo/ultrasound to breast half way through and at the end and they have said they can use the breast lump to check the effectiveness of my treatment and won’t operate unless necessary. Just wondered if anyone else has been in a similar situation and if they had a breast op even though the bugger has spread?
This isn’t something I need to sort out right now but any views/experiences would be welcome as I may need to ask more questions when chemo has stopped.
Thx
Nicky
ps Sorry if I’m a bit dim, but from your post I can’t make out if they just did a mammo to your right breast or ‘took it off’ when they found the 2 lumps
Hi Nicky
My story is a bit similar to yours in that I had my primary dx in 2003 and had a WLE to a small lump in my right breast, then in Dec 2006 found new lumps in same breast. The Onc. recommended a mastectomy but I had to have bone and liver scans prior to surgery. The bone scan revealed spread to my pelvis so my oncologist then asked me if I still wanted the mastectomy. My reply was “why the bl*@%dy hell would I want to keep this breast?” My initial reaction to his comments were that he felt that it was ‘game over’ as far as I was concerned, but now I realise that the feeling is that the secondaries being the oldest cancer are the ones more likely to cause further trouble in the future than the newer cancer and that the treatment you receive will affect the whole of the body anyway. I still had the mastectomy, then I had my ovaries removed and have been on bisphosphanates and Femera ever since (I had FEC in 2003 so didn’t get chemo when secondaries were diagnosed). At my annual bone scan in Jan 2008 everything was still the same. Personnally I feel that if you can lower the cancer burden on your body then go ahead and have the mastectomy but thats just my humble opinion with no medical knowledge at all, just instinct.
Good luck with whatever you decide.
Linda
I’ve had yearly mammograms since being diagnosed in 1995 (was 40 then) because I have a strong family history.
However, since my mets diagnosis and because I’ve been on chemo for the last 20 months I can’t see the point. I mentioned this to my oncologist and breast care nurse and they both feel the same.
I’ve often wondered since I was diagnosed with mets in 2004 whether there was much point in them now as my concerns are far more centred on my liver and spine now.
Hi Pink Dove
Well thats it isnt it - its my liver everyone is worried about isnt it?
It seems to me even if they found a new small tumour in my breast I wouldnt necessarily go back on chemo if my liver was stable and they wouldnt operate…although what everyone has said about lowering tumor burden really resonates
Would love to hear from others
catherien
Hi Catherine
I think it is a difficult one - I tend to think that you have to go with what feels is right for you and if it lessens the anxiety then it’s the right thing to do. I’ve sometimes wondered if I did find a lump in my breast would they change my chemo although I assumed that they would operate to remove the lump.
Interestingly I’ve just had an email from a friend of mine which is about this subject but slightly off the topic. She’s Head of Ethnicity for our local PCT and she’s been sent an email asking women to petition the government to lower the breast screening age to 30 for black women. I’ve asked her if there’s evidence that it’s more prevalent within the black community to support this but an interesting email…
Thanks Linda for your reply - very similar experience!
I didn’t have chemo the 1st time round which is why I’m having it this time - to give me a good clean out! During chemo I’m aware they can see what’s happened to the lump by mammo’s etc and as it’s not very big it may disappear - some hope! After chemo is finished I may need to make a decision about the op but my onc was also of the opinion that the secondaries need treating 1st and the originally intended mastectomy was to prevent any spread but unfortunately this had already happened.
Decisions, decisions! But one I don’t have to make at the moment thank goodness.
Nicky
Hi all
I haven’t had a mammogram since my liver secondaries dx. And given that (1) I am having a whole body CT scan every 3 months at the moment, (2) I’m on chemo and (3) clearly the tumours in the liver are the greatest concern, I’m not sure what the point of a mammogram would be. Would it show up anything that wouldn’t appear on the CT? And if it did, would it make any difference “catching it early”?
I would think it probably depends on what is happening in terms of treatment/monitoring, rather than a blanket “yes” or “no” to mammograms for those of us with secondaries. I still have a 6 monthly appointment with the breast surgeon though (due later this month) and may find he feels it necessary for me to have a mammogram! Will ask him why though as I don’t see any point in my case and I have enough hospital appointments at the moment!
In terms of surgery when it has already spread, I read an article a few months ago that indicated the outcome for those who have the breast tumour removed, is better. Think it was posted on here - will try and find the link. Luckily it wasn’t a decision I had to make, but as you say Linda, it does make sense to me in terms of “cancer burden”.
Kay
Hi Nicky
No they did not remove my right breast. My onc advised me against it because my cancer was of a higher grade than that of my left breast and it was felt that straight to chemo was better for me- particularly due to the fact that it had remained confined to the bones and not gone to any soft tissue. They are now using the lumps to measure the disease’s response to the chemo.
Of course i would rather have it removed…yuk disgusting thing.
I think i am really angry about the fact that this new cancer has done significant damage to most of my bones and despite my pleadings for them to do mammograms on my remaining breast they wouldn’t. Maybe if i had had the mammograms they could have caught this nasty sod earlier.
This is only my personal view - everyone has a different view about what checks they should have once you have secondaries - my bone of contention here is that the patient’s view is not always considered. I have a 7 year old daughter who has not long been diagnosed with diabetes and i need to ensure that i have done everything within my power to ensure that i am around for her as long as possible…inclined to agree with Linda you must go with your instinct.
Best of luck
ps Forgot to mention that my original ‘6 monthly checkups’ were of a clinical nature only - no ct scans, no x rays, no mammograms
Hi domino
Thanks for the reply. I’ve certainly got a few questions to ask when I’ve gone through chemo.
I am completely amazed you did not get mammograms as part of your follow up. I had one 12 months after my dx, as well as 6 monthly general checkups, then 2 yearly. I could have insisted on ones in between as well if I felt I needed to. Each time both breasts were x rayed. I really feel for you and it does sound like there’s a strong case for legal action but that’s a completely different ball game and an energy drainer as well so I believe. I’m grateful that I did have my mammograms and the secondaries were picked up quite early as I had no idea, no pain, felt fantastic etc so it was a bombshell when I found out. However, as with you, there’s no soft tissue involved (as yet) and I’m grateful for that. I’m due a CT scan and mammo/ultrasound in a months time so hope that the horrible FEC and biphos are dealing with boney areas, I certainly can’t feel the area on my hip anymore as I was getting twinges just before starting treatment in May.
Thanks again to all replies and any added will be appreciated as well.
Take care
Nicky x