I have only made a few posts since being diagnosed with mucinous cancer in February. I’ve been taking Tamoxifen since diagnosis and my periods have been every 28 days still. The nature of my periods has changed. for instance, I cough and the blood just pours out during my period. Now, 2 weeks into my cycle and 3 days after my second surgery i’ve started spotting. This is just all getting too much for me at the moment. i’m on other medication for epilepsy which is controlled having been through brain surgery 4 years ago. My therapeutic levels are through the roof at the moment for those meds but i feel ok on them and my neurologist agrees if i’m ok my body is tolerating it.
Please tell me what to do as i’m feeling very hacked off at the moment. One thing after another. The hot flushes at night I can deal with, mood swings, well i’m used to controlling them but this spotting when I go to the toilet, what does this mean? My stomach also feels very tight inside too.
Lady M, sorry you haven’t had any replies, but I think that might be because people don’t feel able to give you any specific advice other than to speak to your specialists.
First port of call for me would be to the breast care nurse, who may get you to see your onc, as it sounds like it’s not agreeing with you. You may also find yourself referred to a gynae, but in the first place, call your BCN.
You could also give the helpline a ring in the morning, they may be able to give more specific advice and help you to bring out the questions that you need to ask.
I’m sorry to hear that you are having a pretty tough time at the moment.
As ChoccieMuffin has mentioned you may find it helpful to talk things through with a member staff from the helpline, they can offer emotional support as well as practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.
Tamoxifen can have all sorts of effects so it might be a good plan to speak to your GP. If s/he thinks it might (an only might as they will probably want to be “more safe than sorry”) need more investigating they can make a gynae referral for you.
Your GP is probably the best person to speak to if you have a good relationship with them, especially as you have a number of health issues and medication. As a whole, it will be beyond the experience of all the individual specialists in any one field but the GP will have a basic over-view and is in a position to refer on.
Hi Lady M, I have only just starting taking tamoxifen so don’t know what effects it will have. I was told that it would “probably” stop me from having periods but women going through menopause are all over the place in this respect for while. I would imagine that a chemically induced transition involving hormone blocking might do that but it is definitely the right thing to check it out either with your BCN, oncologist who prescribed tamoxifen or your GP x
Thanks for your responses. I think i’ll call my breast care nurse this morning and see what she says. i’ll make an appointment if necessary with the gp. I don’t know who my oncologist is yet as i’ve just been seeing my surgeon and nurse at hospital visits. i’m 42 and pre menopause.
Funny how different places do things in a different order. I was told by my surgeon that I would need tamoxifen but it wasn’t prescribed by them. I had to wait for the first appointment once I was signed off by surgery and the onc discussed radiotherapy and prescribed me the tamoxifen.
Actually though my BCNs are really helpful and if it were me I would probably ring them first and ask whether they think you need to get this checked out. I mentioned something to them the other day and they suggested I came along and had a discussion with the consultant about it, appointment in the post the next day and seeing him within days, so they can refer things quickly if they need to.
I’ve just spoken to the BCN and she has reassured me that it is nothing to worry about. What a blessed relief. I’ve been on it for about 7 weeks now and so this is to be expected. When I can summon up enough energy to contact anyone I will. Just feel so emotionally drained at the moment.
When I was diagnosed they did not know whether I was hormone positive or not as they had not tested my blood. They just told me i’d have the operation a couple of weeks after and just in case i was oestrogen rec positive the registrar started me on them immediately to see if it would stop it growing more. Turns out that I am anyway.
Hi Lady M,
Sorry to read that you have been having a rubbish time but glad your BCN has re assured you.
I am 41 and on Tamoxifen since January.
was every 28 days to begin with but this month I was 3 weeks late it was really heavy for 1st couple of days. Probably a sign of erratic things to come unfortunately. I have put on a few pounds too which I am def not happy about
Have had lots of mouth ulcers and sores on my tongue. My GP thinks it’s the Tamoxifen and the Oncologist thinks it is because I gave up smoking. Just have to put up with it, it comes and goes. No hot flushes yet but they could be on their way!
I have never had a days PMT in my life but I have turned into the worlds worst cranky pants as Tamoxifen has kicked in. My poor family. I have given up smoking too which probably doesn’t help.
I seem to have developed post cancer tourrettes! I say exactly what I think before my brain is engaged!
I had 2 surgeries last year. A MPFL ligament reconstruction on my knee in May and then my MX in Dec. Had 5 months off work and feel physicaly and emotionaly drained. Got to gear myself up for Diep reconstruction in 6-9 months.
So much to take in and the goal posts keep shifting. I guess none of us will ever be the same again and will learn to go with the flow.
This forum has been a great resource, the girls that have replied to me have been great.
