Forum Discussion
Karen_T
9 years agoMember
Stopping Tamoxifen - CT Scan & Bone Scan
Two Mondays ago I had my check up with my oncologist and was told that I could stop taking tamoxifen IF I have a CT scan and bone scan to be 100% sure things were all good first.
I was more than happy to do this and even though I had no reason to think anything would show in the results I started to get really anxious.
The scans were booked for Thursday and I had to wait till Monday for the results.
The reason for stopping tamoxifen after only 2 years was so we can try start a family. I was diagnosed at 34 and had only been married for 6 months - on the 16th of November (yesterday!) we had our 3rd wedding anniversary :)
Not knowing if BC treatment has taken away the possibility of having children has been really hard (massive understatement) and I know that even if your periods come back it is still no guarantee you can get pregnant.
Stopping tamoxifen for me is exciting but scary as it is the next rollercoaster ride in this shitty BC amusement park. We may be one of the lucky ones and get pregnant naturally, we may have to go down the IVF path or it simply might not be on the cards for us.
I guess I am just scared to get my hopes up in any way at this point.
Anyway.
CT scan. You get a cannula in for some dye to be injected during the scan and you lay on a bed similar to a rads machine. All very easy/straight forward.
Bone scan. You get injected with something which needs to be in your system for 4 hours before you have your scan so there is lots of time to waste waiting for the next part. You can stay fully clothed for this scan which was a nice change but the machine is a little confronting. Your feet and arms are velcroed into place so you dont move (you are lying on your back) then a large piece of the machine is lowered so close to your face that I swear if I stuck my tongue out I could have touched it! If you have any issues with claustrophobia I would recommend closing your eyes before it is lowered to avoid any stress.
Results day I was holding it together/calm but scared. First words out of his mouth were - All clear! There is nothing in your bones, lungs, liver, bowel..... all your internal organs are all fine. I wasnt expecting the level of relief that followed. It wasnt just yay my results are good but more of a Holy Crap - I am finally DONE!
It is one thing to have confidence that your surgery and treatment got it all but an entirely different feeling to actually KNOW that there is nothing else hiding somewhere.
The piece of mind I have gained from this has been so amazing that I dont know why it isnt standard to have these tests on completion of active treatment. I was told flat out that if I kept taking tamoxifen then I wouldnt need these tests. I am assuming it is the cost and possibly the fact that the dye is radioactive?? Would love to know the answer if anyone is clued up on this front.
I stopped taking tamoxifen 10 days ago now and have broken out in pimples but otherwise good. Been told to wait 3 months for it to be out of my system before we can try get pregnant so I guess I have some time to mentally prepare for whatever comes next.
Reading other peoples experiences in here has helped a lot over the last few years so a massive thank you to BCNA for this forum and all the lovely ladies posting and replying. Sad that so many people are going through this but nice to 'have each others back' so to speak. Am now going to hunt through old posts and see if I can find any pregnancy success stories to get some positive mojo going :)
Didnt mean for this to be so long winded. Thank you for reading!
I was more than happy to do this and even though I had no reason to think anything would show in the results I started to get really anxious.
The scans were booked for Thursday and I had to wait till Monday for the results.
The reason for stopping tamoxifen after only 2 years was so we can try start a family. I was diagnosed at 34 and had only been married for 6 months - on the 16th of November (yesterday!) we had our 3rd wedding anniversary :)
Not knowing if BC treatment has taken away the possibility of having children has been really hard (massive understatement) and I know that even if your periods come back it is still no guarantee you can get pregnant.
Stopping tamoxifen for me is exciting but scary as it is the next rollercoaster ride in this shitty BC amusement park. We may be one of the lucky ones and get pregnant naturally, we may have to go down the IVF path or it simply might not be on the cards for us.
I guess I am just scared to get my hopes up in any way at this point.
Anyway.
CT scan. You get a cannula in for some dye to be injected during the scan and you lay on a bed similar to a rads machine. All very easy/straight forward.
Bone scan. You get injected with something which needs to be in your system for 4 hours before you have your scan so there is lots of time to waste waiting for the next part. You can stay fully clothed for this scan which was a nice change but the machine is a little confronting. Your feet and arms are velcroed into place so you dont move (you are lying on your back) then a large piece of the machine is lowered so close to your face that I swear if I stuck my tongue out I could have touched it! If you have any issues with claustrophobia I would recommend closing your eyes before it is lowered to avoid any stress.
Results day I was holding it together/calm but scared. First words out of his mouth were - All clear! There is nothing in your bones, lungs, liver, bowel..... all your internal organs are all fine. I wasnt expecting the level of relief that followed. It wasnt just yay my results are good but more of a Holy Crap - I am finally DONE!
It is one thing to have confidence that your surgery and treatment got it all but an entirely different feeling to actually KNOW that there is nothing else hiding somewhere.
The piece of mind I have gained from this has been so amazing that I dont know why it isnt standard to have these tests on completion of active treatment. I was told flat out that if I kept taking tamoxifen then I wouldnt need these tests. I am assuming it is the cost and possibly the fact that the dye is radioactive?? Would love to know the answer if anyone is clued up on this front.
I stopped taking tamoxifen 10 days ago now and have broken out in pimples but otherwise good. Been told to wait 3 months for it to be out of my system before we can try get pregnant so I guess I have some time to mentally prepare for whatever comes next.
Reading other peoples experiences in here has helped a lot over the last few years so a massive thank you to BCNA for this forum and all the lovely ladies posting and replying. Sad that so many people are going through this but nice to 'have each others back' so to speak. Am now going to hunt through old posts and see if I can find any pregnancy success stories to get some positive mojo going :)
Didnt mean for this to be so long winded. Thank you for reading!
16 Replies
- YLYMember@"Karen T" - No worries. I plan to do plenty of traveling in the mean time so baby can wait! All the very best to you.
- Karen_TMember@YLY Bugger! I must has misread. Time does fly so hopefully it comes round super quick for you xo
- YLYMemberHi @"Karen T" - Wishing you all the very best for great results with the ovarian reserve test.
Unfortunately for me, it'll be another 2 years min or hormone therapy before I'm able to take a break and start to try and start a family. - Karen_TMemberThank you for all your kind words ladies!
I decided to be a little proactive and called the fertility specialist I saw before I started chemo. I have since had a blood test to check my ovarian reserve and get the results on the 13th of Dec. Hoping for good results so we can avoid the IVF option. Fingers crossed!
@YLY You are so close to being at the next step too! Hope your last months of tamoxifen go quickly and you add to your family soon xo
@Brenda5 me too! It was a bit confronting and I normally aren't fussed by the big machines. - ShayllsMemberFantastic news Karen. Fingers crossed that things go wonderful from here and that bundle of joy your wishing for isn't too far away. Shaylee
- Liana_annaMember@"Karen T" Congrats on the all clear results!! I hope you get what you're wishing for. hugs, Liana xx.
- KazziMember
Congratulations Karen T! All the best on your baby quest & family plans for you and your husband.
Getting that all clear must be amazing. I've often wondered myself why those scans aren't done after treatment.?
Looking forward to seeing a baby pic here in the future. Best wishes,
Kazzi (a different Karen T)
Xx
- rowdyMemberFantastic news 3 months to practice and get some normality in to your lives.
- ShareMember
Fantastic news @Karen T and Happy Wedding Anniversary.
You and your husband have a double reason to celebrate.
Enjoy this new found relief and "weight off your shoulders" and I wish you all the best with your family plans !
- Brenda5MemberThat's great news of an all clear. I hated the bone scan as well got really scared. I hope I never need another one in this lifetime. Take the time to re-get to know your hubby and be a unifying force together before inviting a baby in to the mix. At least you will have fun having lots of practice in conceiving. ;)