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Juls 12-29-2015 12:50 PM

Need input!
Hi All

Need some help!
I have just been told on 24th Dec. that my CT of 21st Dec. shows 2 bony lesions -
I quote:-
"2 bony lesions now noted that were not documented before.
1 in inferior left sacral wing.
1 in top of right femur.
Possible disease.
Have been there since January 2015"
This has really shocked me as I have had at least 5 CT's this year. I was on a trial and CT's 9 weekly. All CT's reported as Excellent! I feel so let down. The Hospital made a big thing about Rad/Consultant and that important same person read all Ct's.! Not sure on size (hopefully not that big if just noticed)
Today my Nurse called back to tell me what treatment has been decided for me -
Taken off trial (as I expected)
They are saying Xeloda with a biphosphonate (IV 6 weekly) plus continuing Herceptin. Herceptin will now be by injection into leg 3 weekly.
Leg to be x-rayed.

Nurse was upset that she had made things worse by telling me about "been there since January". She wanted me to know what was written. I told her that this has really concerned me.
A year and not noticed! Have lost a bit of faith & hope this week.

Can I have some input please? All thoughts appreciated.

Treatment to start 31st Dec.

Lucy 12-29-2015 02:53 PM

Re: Need input!
Lots of thoughts running through my head. One of which is they said "possible disease" but it sounds like they're treating it as if it is a fact it's cancer. I don't know how things are done if it's in the bone but no biopsy? Will this plan treat any cancers in other areas of the body? I'd go forward with their treatment plan, for now because it sounds like you don't have much choice in the matter, but I'd be asking a lot of questions and would be considering going for a second opinion. Is perjeta lost to you now?

I'm sorry you're having to deal with this. Hopefully things will get better soon.

Sending you hugs

Becky 12-29-2015 02:58 PM

Re: Need input!
A few questions I would ask is if the location and size has remained the same all this time. Did any other cts pick this up. Have all of them looked at by the same radiologist or rad onc. Really have someone study all those pictures and if your medical onc can coordinate the pictures in reference to what treatments you were on (or not on) when those pictures were taken. See if there were any changes when not in treatment.

What is your cancers hormone status? Erpr positive cancer likes the bones. If this is there, it may have changed and tamoxifen or something may greatly help.

Juls 12-29-2015 03:22 PM

Re: Need input!
Hi Lucy
Yes- I queried the possible disease part. Asked if Cancer or Osteoporosis etc. She replied Cancer!! No biopsy done or even mentioned. Unless it is suggested after next x-ray.
All other areas supposed to be clear. Your right, don't think I have much choice in this! Perjeta no longer an option now as it was a trial drug only. So far its not approved for general use here. Also Nurse said not working for me anyway (?) How do they know which one or in fact if all no longer working?
Have written list of questions.

Juls 12-29-2015 03:56 PM

Re: Need input!
Hi Becky
They say that it was only picked up on this CT but because found this time they have looked back at all Ct's. Knew where to look?!!
My understanding is that both lesions appeared/obvious in last weeks scan and I took that to mean they have grown. The wording on the report is a bit strange - "2 bony lesions noted that were not previously documented"
Really disappointed about this. I was told that it was same Rad Consultant that has checked all my CT's because this was best! Really!!
I am Triple+ and on Herceptin, Perjeta and Femara for last 2 years. Perjeta cancelled from this week(31st)
I had a tiny mark on L1 2 1/2 years ago that Oncologist thought was cancer. Even though CT's and MRI state not connected to cancer. Strangely enough on this weeks report they have actually written, for first time, that L1 "no change and not connected". They can see this tiny mark on vertebrae but missed pelvis and femur?!!
Really don't know what to think.

MaineRottweilers 12-30-2015 06:14 AM

Re: Need input!
Becky gave really good advice and asked pertinent questions. I would add, they can't definitively say it's cancer without a biopsy or at very least a PET scan. I would imagine a biopsy would be an absolute must to be certain that the cancer hasn't changed at all.

Juls, I hope they are mistaken.

Becky 12-30-2015 07:04 AM

Re: Need input!
How long have you been on Femara? It might be time to change to Aromosin. It is an AI that works differently than Femara and Arimidex. Faslodex is another alternative. An anti hormonal switch is probably in order.

Juls 12-30-2015 08:01 AM

Re: Need input!
Thanks Tracy
I think they have decided worst case scenario - seems to be the way here!
I am not sure if I will be given pet/mri etc & if honest not sure I want to go for further tests as they have always caused more problems. They then waste time on them (L1 mark) and miss the obvious! One of my reasons for being in the trial was - I was continually checked..After all they would catch things quicker!! So that backfired!!

Juls 12-30-2015 08:17 AM

Re: Need input!
Hi Becky
Been on Femara just over 2 years. I did wonder about changing to another one. I will ask the question tomorrow when I see Oncologist.

Juls 12-30-2015 08:23 AM

Re: Need input!
Hi Becky

Does Finish have another name. Checked web and can't find anything!


Becky 12-30-2015 01:51 PM

Re: Need input!
I don't know why my tablet wrote that. It was supposed to be Aromosin. I changed it above too so I don't confuse anyone

Juls 12-30-2015 02:01 PM

Re: Need input!
Thanks Becky

Will research it!

PS - Finish is a dishwasher powder here!!! Maybe its better !!

Juls 12-31-2015 12:22 PM

Re: Need input!
Just an update.
At hospital today. Treatment as expected - to be Xeloda, Biphosphonate ( drug to be decided) & Herceptin by injection. Home with the Xeloda to start tomorrow. Also taken off Femara. Told not good with other treatments but then said might add in another AI later (?)
As I expected the comment re CT's -" now know where to look & a subtle change in January"
All CT's to be sent for and studied.
Onc asked me what I understood from this CT report!!
Bone scan & x-ray being arranged asap & Onc wants Surgeon to check bone.
Not sure what to make of all this but just have to go with it. No other option.
Thanks for everyone's input. Much appreciated.

Andrea Barnett Budin 01-06-2016 02:13 PM

Re: Need input!
So, Juls, a biopsy would obviously be necessary. They can say possible disease, possible cancer, but they surely need to confirm their suspicions.

I was able to get 2nd and 3rd radiologists to view my ev 8 wk scans back in the day and #2 and #3 disagreed with #1 -- none of them knowing the others existed or what their reports said. #2 and #3 decided they weren't looking at tumors but the dead remains of tumors. So if you can, get additional input. Mine came with onc #2 and onc #3 each independently asking me to see my scans and let their radiologists view them.

When I had June 2015 scans radiologist's report said suspicious of carcinoid tumor, which had been suggested by the previous scan which they compared 6/15 to.

Turns out without surg, which I declined, they did special ocreotide scan which would determine if what they saw was carcinoid and I passed the 4 hrs of scanning w/flying colors. NOT carcinoid, which I agitated about for a full year, till I got an oncological surgeon on board (an hr away, but worth the trip cause he's the only one who knew about this test). I thought my wonderful onc who knows everything would know about such a thing, but it was beyond his scope apparently.

Did you have the bone scan? Did you have an xray? Did you meet with onc surgeon to check bone?

What tx are you now on? You mentioned Xeloda, Biphosonate (to be determined) and Herceptin by injection.

Are you a part of the team who decides what the biphosonate will be?

Is anyone on this board familiar with Herceptin by injection?

I haven't heard of that before.

Did they biopsy yet?

Juls, please fill us in when you can. We are all thinking of you and hoping for your roller coaster ride to come to a stop, with conclusions. So much on your plate. Don't panic yet. Go with the tests and all the input you can muster so make a sane plan.


Juls 01-06-2016 03:38 PM

Re: Need input!
Hi Andi
Biopsy not mentioned yet. Think they have decided it is cancer regardless.
Been on Xeloda since 1st and had Herceptin injection on 31st. It was really quick - just a bit stingy, took 3 minutes and finished. Leg a bit marked and achy for a day but otherwise very easy. A step forward.
I did ask about the bisphosphonates & was told Zometa/Zoledronic Acid. When I mentioned other ones (particularly oral bisphos.) & denozumab she decided we would discuss later. She did mention another one -Ibandronate (?) Think I was supposed to just accept Zometa. I am trying to research bisphos. but don't like info on any of them. Does anyone know if one is better than the other?

Wish I could request other radiologists etc but don't think that would go down well here!

Anyway enough of my moans. It's been a long day!

Hope you are well and thank you for your kind words.
Take care

Juls 01-20-2016 05:14 PM

Re: Need input!
Re my comment about Finish dishwasher powder.
When researching bisphosphonates - one of the first articles I read started with
"active ingredient used in laundry detergents and fertilisers. Would you put in your body?"

Just a bit worrying?!!
Will know tomorrow which one Oncologist wants me to have. Feel a disagreement coming!

Juls 01-21-2016 11:01 AM

Re: Need input!
Just back from hospital
Had leg x-ray today. They let me out so according to Nurse can't be an immediate concern (that I break femur)! What!!! Nurse also said "you have had (lesion) it a while" - Yes, only because it was missed on CT!
X-ray being sent to Oncologist & an Orthopaedic Surgeon to look at.
Didn't get bisphosphonate. Nurse not comfortable giving it because I have to get a root treatment next week. Even although my Dentist says its ok because only just starting bisphos. So one step back again. Also Zometa is bisphosphonate they want to give. I asked about Denosumab but apparently I don't fit criteria ( too young and no kidney problems) Plus it's too expensive! So looks like Zometa. Only good points are that I have 3 weeks to research other bisphos. & get root treatment done.
Does anyone know if one better than another?

supportwife 01-21-2016 11:32 PM

Re: Need input!
Are CT you refer same as bone scan? I have always been told that CT only looks at soft tissue and not bones. A bone scan is more accurate to check for bone issues. Is that not true?


Juls 01-22-2016 03:14 AM

Re: Need input!
Hi support wife
CT and Bone scan different. CT can look at bones but bone scan is more accurate.

They have been using CT to monitor a mark on my spine (not connected to cancer)for last 3 years & it was in my last CT that 2 bone mets found.
Had to have leg x-ray as well - more detail!

supportwife 01-22-2016 12:51 PM

Re: Need input!
Thanks Juls,

However that brings up a good point as part of regular scans, should we as patients / caregivers request for bone scan in addition to CT? From what I see, it does not seem like a protocol.

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