Hi all. I posted under Tamox SE couple of days ago but just wanted to see if anyone has had a similiar experience. Having been dx’d last Sep aged 43 with Invasive tumour in one site plus DCIS and just DCIS in other, I had lumpectomy and 5 weeks of Mon to Fri Radio. SNB was clear and I started Tamoxifen in October before Radio and was ok with the hot flushes & night sweats not even feeling tired with radio until after it finished. Although I put on a bit of weight due to my ‘kill cancer with cake’ approach, I thought returning to work in January would be road back to normality. Well the last three months have been like trudging through treacle and getting slowly worse not better. I got horrendous period pain (like giving birth but without the beautiful baby at the end) and heavier than normal bleeding while still having hot flushes and sweats. My fatigue is shocking and I feel like I am watching my life through a pane of glass. I broke down in front of my boss the other day who was very understanding. Went to doc who did the depression questionnaire which scored me as 18 out of 27 which is ‘major depressed’. This I believe firmly is as a result of Tamox as precancer I was a bubbly active person - post cancer I have been self loathing and guilt filled that I am not eternally grateful & positive all the time. So now I have started on Citalopram. The best bit was my sister giving me an interview with Jennifer Saunders where she said she had wretched depression with Tamoxifen and Citalopram gave her a life line. I was so relieved to find out that I was not the only one as it is so easy to feel like a fraud. I wondered if any of you had a similiar experience you would like to share. Also I hope this may provide some comfort for anyone else who is suffering to know you are not the only one and not going mad as I thought I was. Love & Strength xxx
YES!!!I am convinced that sudden oestrogen deprivation helps to make you more prone to depression.
You might want to ask about zoladex to suppress ovaries if you’re still having periods.
On phone so long posts are hard.
Citalopram has definitely helped with my low mood.
Oh thank you Choccie Muffin. Doc has given me Tranexamic acid and Mefanamic Acid for the flow and pain respectively so I’m going to give that a go. I’ve been enjoying your postings as once again I’ve turned to this site to try and understand what the "new normal’ is. People like you and Rev Cat and others on this site do so much in posting to help the reluctant members of the BC fellowship. Certainly provides me with great comfort. xxx
I went on sertraline AD when diagnosed but don’t get any depressive side effects from tamoxifen just from having cancer. Lots of ladies who don’t take hormones feel depressed after treatment… It’s a massive change to your life learning to live with cancer.
I did get the bleeding problems with the tamox though and ended up having a D and C and requesting a mirena insertion which was a godsend… no more periods!
love and hugs
Lxx
This is an interesting thread and I’m sorry to hear you are having these problems.
I was dx 2004 and have had the usual stuff to go through. Was treated with Tamoxefen, oopherectomy, and then had a PE(blood clot on lung) when had recon so put on arimidex.
Not too bad on Tamoxifen, but felt really low on arimidex and almost always anxious and low- not sure if this is due to utter deprivation of oestrogen. This hasn’t really lifted since stopped taking arimidex.
Just had another day in clinic (being checked for swelling over mx site on affected side)- of course, I went into a flat-spin (AGAIN)of nerves and anxiety, burst into tears(AGAIN) in front of consultant, who seemed to think that I should be over getting upset and crying, told me all was OK and seemed annoyed that I had wasted his time!Think I need to be getting a grip by now really, so might go and see GP. XX
Good Lord Happy Shopper - your consultant needs to return to medical school to work on his emotional intelligence by the sounds of things. I dearly hope your GP is supportive as well he/she should be after all you have endured and are still dealing so admirably with. Best of positive & powerful energy going your way.
Lulu34 - very interested to hear you went on Mirena coil. I was curious about getting same but thought I couldn’t as it would be hormone based - mind you as is sometimes my wont, I never asked a professional. Glad to hear it solved your period problems.
Love and strength to you both
xx
Pcb… I had researched the mirena and there is research which shows it actually help prevent endometrial changes that occur during tamoxifen use. Recent research has found it to be safe if it was inserted after your diagnosis although an increased recurrence if it was inserted prior to diagnosis… Not sure why this is. Anyway it certainly helped me and I would still have it if I’d not a hysterectomy.
HS I think seeing your gp is a good idea… I’m sure your consultant would rather you get things checked than leave your concerns and worry more or have something go untreated.
Lxxx
Hi PCB and lulu,
Thanks for your comments. I will see the Gp - unfortunately my own Gp, who is such a lovely, caring doctor who has been with me from the time of diagnosis and has been so supportive, has been on long term sick leave since last May after being dx and treated for lung cancer. This has upset me so much, and I now have to build up a new relationship with one of the other doctors.
My breast consultant is pretty arrogant, and always gives me the impression of “not you again,now what!” and is quite impatient with me. Thing is, I think I’m as wobbly as I am whenever I go in there because when I was first dx, I had found 2 lumps in my breast, was told these would be fine, had a FNA, came back normal, US normal, mammogram showed tiny area of microcalcification and was told this would be DCIS and highly unlikely to be anything else.Small bx of area done under mammogram confirmed DCIS, but my gut feeling said otherwise, and I was shot down each time by the consultant(different one, now retired)each time I expressed my concerns about the lumps I could feel.I was actually shouted at by this consultant (hubby present, did nothing because he believed the consultant) who said"for goodness sakes, there are no lumps, there is no breast cancer, there will be no mx, no radiation and no chemotherapy!".Despite me asking for mx, it was declined, and was told I would have this “tiny” area of DCIS removed and that would be that.
So, had this done, and the biopsy of the area showed an invasive tumour (1st lump!) and couldn’t get clear margins due to “widespread DCIS” so was told I would need a mx after all. That’s when they found the second lump in the MX (another invasive tumour, DCIS throughout my whole breast, and Pagets disease in the nipple!
I did get aerbal apology from the consultant when I saw him in clinic and the BCN even apoligised, because she had got fed up with me too!!
So, I think it is this that I find hard to let go of really, and even when I’m told everything is OK at these appts and scans, there is a part of me that always questions it, and this causes me great anxiety that I can’t seem to let go of.
Think I should be moving on with this after so long, but my “old” GP understood this.It resurfaces everytime I go up there, despite my efforts!
Sorry for rambling on. Good luck to one and all XXX