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Mets to T9 Dec 2019

12 REPLIES 12
4748
Member

Re: Mets to T9 Dec 2019

It is unpleasant.  I have noticed pain in my back flaring but nothing like last year.  I suppose, site of radiotherapy will hurt.  My next Pet scan is in February.  I pray and trust God it will remain dormant.

Jo7
Member

Re: Mets to T9 Dec 2019

Ah ok- thank you for replying! I think I over think everything and panic! One scan is saying one thing and other scan is saying another. Not sure whether I’m coming or going! Also not sure if I ask the write questions at my appointments! Feel like I have to prepare for an interview every month! 

Jo x

4748
Member

Re: Mets to T9 Dec 2019

hi, yes.  I have PET/CT every six months at the Royal Marsden Hospital in London.  I am allergic to CT contrast.

Jo7
Member

Re: Mets to T9 Dec 2019

Do you have PET scans on a regular basis as the main scan?

4748
Member

Re: Mets to T9 Dec 2019

I have PET done.

Jo7
Member

Re: Mets to T9 Dec 2019

Hi- I am interested in what scans everyone is having. I had a slight arguing/fighting to be listened to kind of thing at my oncology appointment last week. I have secondary mets in bones- mostly pelvis and spine. I had a PET scan at the start of diagnosis and then I’ve been having 3 monthly CT scans for the past year. I’ve had one bone scan but because I’ve been complaining of pelvic pain, she’s put me in for another bone scan so I have a comparison one in Jan. This was literally to appease me! I recently had an MRI of pelvis for a haemorrhaging ovarian cyst which they’ve decided to leave alone as they don’t want to stop my treatment to have the op to remove it. The MRI showed that there was extensive bone marrow infiltration in the pelvis but yet the CT scan showed all was stable. I asked was an MRI a better scan to have for the bones instead of a CT and my oncologist said no- that the mri results are difficult to compare and that it’s the CT scan that monitors the palboccilib. I also asked well does the CT scan only pick up spots when they are big enough and she said yes. I am totally confused! Should I be having MRI scans? She said she won’t be doing MRI scans but I feel like the CT scans don’t show enough detail. I feel a bit lost and a bit abandoned- like I’ve got secondary cancer and they don’t care as much about me? Am I being silly?

Thanks

jo xx

4748
Member

Re: Mets to T9 Dec 2019

My scan is due February.  Tumour markers are within normal levels.

Gillyflower
Community Champion

Re: Mets to T9 Dec 2019

Hi 4748,

I have mets dotted throughout my spine in the T and L regions.  I had to have surgery in January this year because my C7 had collapsed and I was at risk of cord compression. 

Prior to finding the secondaries, I was on Tamoxifen. I had intense backache which was very bad at night and first thing in the morning getting up.  My lower back, hips and knees were always incredibly stiff and sore.  I would feel better when I started moving around.

After my op, I was put on Letrozole and Palbo and this excacerbated the back ache and joint stiffness enormously - at one point I could hardly walk as my back would go into spasm.  I was actually in a worse place then than I had been before the op as far as pain and mobility were concerned.

When I was taken off Palbo/Letrozole and put on Capecitabine, I suddenly felt much better.  So for me, the Letrozole was really having awful side effects that made that backache much worse.

I think if you have noticed your back ache or pain getting worse or becoming much more uncomfortable though, you should ask if they can bring your scan forward. 

My Consultant recently said to me that if I have new pains or aches that persist, especially in the spine area, don't wait for the next scan, be proactive and ask if it can be done sooner.  I think its better to get it looked at now and get the peace of mind one way or another xxx

Danbo
Member

Re: Mets to T9 Dec 2019

Hi,

I’m in a very similar situation to you. I’ve solitary met to T12 and I had surgery inc rods and screws etc. I’m also just over a year since diagnosis.

I’m on Palbo, letrazole and Zoladex.

I’ve had quite a few ‘episodes’ over the past year with back pain including twisting and turning over in bed. I get 3monthly MRI and CT scans which has so far shown no progression and so they say the pain etc is just linked to the fact a lesion was in spine and subsequent surgery and radio.

So I would say, try not jump to conclusions about what it could be (I have too much this past year) and hope things will settle down (though do push for scans as much as u can) Also I increased my dose of Gabapentin which has helped with the pain (good for nerve pain etc) which has really helped.

btw is it standard practice for you to get a yearly PET scan? I’ve pushed to get one but have been refused.

good luck

Dan

4748
Member

Re: Mets to T9 Dec 2019

I always take Accord.  I get scAnned every 6 months and Denusomab every 6 months too.  1 single mets in T9.  Ca15.3  was 28.3. And CRP 0.7 however I still worry about activity - at my last scan it was dormant.

SondraF
Member

Re: Mets to T9 Dec 2019

I will say that some brands of letrozole are worse than others. I almost cried with relief when I saw the pharmacist pull Accord for me this month as that is the generic that works best for me. All of the achiness and fatigue I had been feeling on the Sun brand disappeared within three days of starting the Accord. I had to take ibuprofen a few times a week to reduce the aching enough to sleep, and woke up middle of the night more than a few times flexing my hands because the joints ached.

My mets are in my lower lumbar and I have noticed much more flexibility and less aching in that area too since the switch. I get denosumab injections for bone support monthly, but I can't say I notice one way or another if that makes a difference. It could also be the Ibrance dose level, as that can drive a lot of fatigue.

Are you on hormone suppression? Lack of estrogen can also drive a lot of the joint pain too. And you are only scanning once a year?

Shareena_BCN
Community Manager

Re: Mets to T9 Dec 2019

Hi @4748 

Thank you for your post, we are sorry you haven't had a reply yet. I'm sure one of our Forum members will be in touch soon.

You may find it helpful to speak to one of our Breast Care Nurses on the free Helpline, 0808 800 6000.

Alternatively you can ask one of our experts in the Ask Our Nurses area of the Forum and they can respond to you online.

Best wishes
Shareena
Social Media Officer

4748
Member

Mets to T9 Dec 2019

Hi everyone, On the 27 Dec it will be a year of my secondary diagnosis - solitary mets to T-9 with spinal cord compression.  Had palliative therapy to release spinal cord and since February 2020 on Letrozole, Ibrance 125mg and Denusomab 6 monthly (although) I tried Zometa second time round (awful reaction).  
At my first Pet scan post secondary diagnosis I was in remission (next scan February 2021).  
I am somewhat concerned though that since Zometa in October I am experiencing back discomfort and heaviness.  My mind starts racing because of location of my secondary.  I expressed my concerns of joint stiffness, difficulty turning around in bed and backache, he said it was the Letrozole.  Anyone else especially to mets to spine find this is the case?  Thanks