Here I am seeking reassurance when I know where I should really go - BCN or GP! - however I am due to have my 1 post dx check on the 18th and mentally have been trying to put questions and worrying off until then however thought if I ran how I was feeling past you all you could tell me its probably nothing and help me stop worrying.
I was DX August 08 18mm grade 1, 1/9 lymph nodes, strongly er and pr +. MX (as tumour under nipple) and LD recon, 6 x FEC and tamoxifen since March this year.
My periods held on throughout chemo but stopped as soon as I started tamoxifen. About 2 weeks ago I started bleeding (not heavily and not fresh) which lasted for about a week I have also been having a heavy dragging feeling in my uterus. I have had fibroids for the last 15 years but they haven’t caused me any concern for about 10 years really. I know tamoxifen doesn’t necessarily stop your periods but I am concerned that they stopped and then appear to be starting again - any one else with fibroids/restarted periods/heavy dragging feelings?
In the last 2 weeks I have been getting pain and tenderness under my armpits and in my good breast and around my recon breast. I have also developed pain around my sternum and between my shoulder blades and shooting pains up the sides of my neck. The armpit/breast and shoulder pain comes and goes, the sternum pain is getting worse and is now present most of the time and is not different when I breathe.
I finally gave up smoking after about 25 years of smoking about 5 weeks ago and am trying to convince myself that it may be the lack of smoking that has given me these pains however I have no cough etc to suggest my lungs are clearing out and as I said the pain isn’t different when I breathe.
Can anyone help and tell me that they had similar and it turned out to be nothing?
I don’t really have any knowledge of hormonal problems and breast cancer because all my experience has been hormone negative. But I do think your problem is closely related to the fact that you have fibroids and that when on on tamoxifen needs to be watched carefully. So do emphasise to your onc about the fibroids problem and I think you should be referred to a gynae. If the onc doesnt see this need then I would go to your GP! A lot of the other pains can be because of the tamoxifen.
I think as your appointment is on the 18th they aren’t likely to bring it forward if you called them anyway - but I hope you get some action then.
I had heavy bleeding nearly 6 years post chemo. I was initially on tamoxifen and then arimidex. Onc did refer me to gynae consultant who found a polyp (very common if you are on hormonal treatments evidently) which was then easily removed.
I had a lot of aches and pains when on tamoxifen which was one of the reasons I then switched to arimidex (which some people find harder but I found easier).
As Dawn says, they won’t bring your appointment forward but if I were you, I would be asking for a gynae referral and also some explanation of the aches and pains.
I had five years of Tamoxifen, the first two with zoladex as well and for those two years my periods stopped completely. When I finished the Zoladex and was just on Tamoxifen, I got very occasional bleeds, also not fresh, and the heavy dragging feeling that you’ve mentioned. I also used to get the pain and tenderness in my armpit and breasts like you, and also lots of headaches! I’ve now finished both zoladex and tamoxifen and my periods are back to what passes for normal with me but I still have a lot of aches and pains which I think have something to do with long term Tamoxifen use although the tenderness and headaches are a lot less frequent now. My onc described my breast pain exactly and said it was nothing to worry about and that I’d probably always have it. I saw my GP about the other aches and pains yesterday and am waiting a blood test and possible bone scan later this month. Will post to let you know how it goes . . .
Hope your appointment on 18th goes well - and well done for giving up the smoking! I’ve still not managed to do that yet!
I can’t really add much, my cancer was not hormonal + but HER2+, so I don’t know much about the hormonal side.
As we were both undergoing treatment at around the same time, and I remember we often compared “notes” I just wanted to wish you well, and to say that its funny how all the niggles/aches/pains and differences really affect us post dx. Do the Doctors really understand how we feel and worry, probably not unless any of them have ever had cancer.
Anyway, good luck, thinking of you and hope that all turns out to be well for you.
Thanks for all your replies Ladies and Hi Peacock!
I probably had lots of aches and pains pre dx and dismissed them as just that so its probably just paranoia! Its reassuring to hear that others have experienced similar pains and or bleeding and the breast and underarm pain so thank you for taking the time to reply.
Am going to mention it all to my Onc and expect to be told its nothing! Apart from buying my own MRI scanner I am not sure how I can put an end to the eternal merry-go-round in my head of “its probably nothing so I’ll ignore it…argh its back and I’m a dead duck!”
Hi Ostrich,
I am sorry to hear you are worrying,its only natural.I go from worrying about a cough one week to an ache in my liver area the next,and migraines are now possible brain mets.I hope we settle down eventually.Like you say we probably had all these before BC and never batted an eyelid.I am sure you will be fine but I know you will need more than my reassurance.Good luck with the Onc.
I have my own troubles as you know so am off for staging today so at least that should put my mind at rest for a while!(as long as everythings clear of course!)
Love n hugs
Dot
xxx
Do you ever stop worrying about every ache or pain… Cancer re-occurance is always in the back of my mind. I was diagnosed in April 2008 with DCIS, had a MX and an immediate reconstruction but unfortunately there was lymph node involvement. (Grade 3 and aggressive) Have travelled the chemo and radiotheraphy route and now have had my Herceptin stopped after 12 infusions because of heart damage…also told chemo and radiotheraphy has caused scarring damage to my left lung, diaphram and spine. Have had my first post op check up or grope for want of a better word and am due a mammogram in November and then providing if everything is OK wont be recalled to the surgical clinic until 2011. When I asked about reoccurance was told if I became aware of any problems to get in touch with my GP for a hospital referral. Not very reassuring advice or any comfort to me whatsoever as I never had any signs of breast cancer which showed up on my first age related mommogram. Just have to get on with life as best as I can.
Hiya
I have not been on this site in a while i am notsure if it because its ayear since dx but i am feeling really low. Back ache and aburning in my right side which i know i have to go to Gp but i keep putting off even though i need to know having told OH or he would be booking app in.
At the moment still not back to work as chemo took it out of me with nerve damage.
Just thought i would put how i feel into words it might help
poppet x
Hello Poppet. Sorry to hear you’re feeling so low and that you’re worried about a pain in your back and right side. Phone today for a GP appointment and that way you’ll be doing something positive. The pain may well be nothing at all to worry about, but until you find out you’ll continue to worry.