Epidural tumor: Hi there I have... - SHARE Metastatic ...

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Epidural tumor

Joey1965
Joey1965

Hi there

I have epidural tumor at level T5-T6 showing mild cord compression. I understand it has been ‘stable’ for a year.

They are recommending radiation to the area.

Any of you with epidural tumors? What have you had done ? If radiation ... what type of radiation ?

Thank you !

Jo

14 Replies
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Hi Jo...I was on arimidex when first diagnosed and did horribly on it. So instead of going to letrozole my onco put me on tamoxifen. The tamoxifen stopped the bone Mets but I developed soft tissue tumors along my spine as well. The radiologist did 5 days of radiation to those spots. I think just the stereotactic radiation. He didn’t want to put me through more testing to do the other more aggressive radiation. He said breast cancer responds very well to radiation so he didn’t feel it mattered which type. I’m now on letrozole and ibrance so hoping I won’t see any more of those. I’m about maxed out..my body can’t take anymore radiation..Hope that helps a little..

Joey1965
Joey1965 in reply to Iluvpuppies

Thank you for your response. All i learn from others journeys is so very helpful. 🙏🏻

Hi jo ,

I had a Spinal lesion and got cyberknife a form of radiation but they do over a short time frame , either one / three or five days . It’s more targeted than regular radiation and has a very high success rate . I’m not sure if it works on the type of tumours you have ? . But worth asking Kevina

SophSP
SophSP in reply to Bren1956

Hi Kevina,

Did you have it done on the NHS? When I mentioned this to my oncologist she wasn't in favour of it, but I think it's available over here on the NHS. My goal is to get rid of the two spots on my spine, and I have also read of the high success rate of this particular type of radiotherapy. It can also be performed in the same location as previous radiotherapy treatments.

Sophie

Bren1956
Bren1956 in reply to SophSP

Hi Sophie ,

I’m in Ireland and I got it done on my health insurance . My oncologist referred me for SBRT in one our public cancer centres here and when I met the consultant radiologist she thought I was a candidate for cyberknife . There is only one centre here and it’s a private hospital . It cost circa €22k . I got it done in 3 fractions as near my spinal cord . You go for a planning ct and it takes about an hour for each session . They give you a Xanax to relax you . I fell asleep . I had no side effects . Kevina 😀

SophSP
SophSP in reply to Bren1956

Hi Kevina,

Thanks for letting me know. If I can't get it done on the NHS I wouldn't mind going private and paying for the treatment. I never thought I would pay for my healthcare, but since being diagnosed with this disease I am no longer against it.

Thanks for the advice. If it came to it I could pop across to Ireland and have it done.

Sophie 🌸

Bren1956
Bren1956 in reply to SophSP

Whatever it takes to keep this “ cr.p” disease at bay ! ❤️

Joey1965
Joey1965 in reply to Bren1956

Thank you Kevina for your response. I had a few lessions on spine at diagnosis - had ‘regular’ radiation at that time x 10. I think possibly cyberknife is what i am looking for now for epidural tumor - it will work but radiation oncologists told me that the area is ‘too large’ . I have the epidural tumor in area L5-L6. I have read that cyberknife has high success rate.

Hi Jo,

I had radiotherapy to my spine back in 2018, as I was experiencing a lot of pain once I started treatment. It worked, although it took a long time for me to see the benefits. I also suspect it's one of the reasons why my spine has remained stable since I had it done. My oncologist even said so. I would go for it!

Sophie

Joey1965
Joey1965 in reply to SophSP

Thank you Sophie !

SophSP
SophSP in reply to Joey1965

You’re welcome!

I had stereotactic body radiation on C6 and L5. Five painless treatments on each that took less than 10 minutes per treatment, Two treatments per week for 10 weeks. The only side effect was a bad sore throat that lasted two weeks after the C6 radiation. I understand a sore throat is also a possible side effect of radiation to the thoracic spine. It goes away. I took iodine supplements while undergoing radiation as well . I don't know if that helps but except for the sore throat, I had no ill effects such as fatigue. Good luck!

Thank you for your response! It is what i am looking for - stereotactic as its so precise vs regular radiation. I had regular radiation done in 2018 at initial disgnosus - on C5 to T2. Side effects were brutal!

Interesting on the iodine supplements. Will look into that.

I have been told by an herbalist friend who is pretty knowledgable and works with an alternative doctor that Idoral is the best iodine supplement. Amazon has it but the price keeps going up! I have been taking it with no ill effects for quite awhile now. Good luck with everything.

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