Did anyone NOT get Bone and CT Scans?

berries

Did anyone not get bone or CT scans done after their stage III diagnosis? I was just upgraded after surgery this month as they found positive nodes that did not show up in any scans (MRI, ultrasound or mammogram). My MO understands that I have a LOT of anxiety around this and the idea of having scans and the waiting would probably kill me before anything else does.

Has anyone not gotten any scans and moved right into chemo/rads/etc?

Looking for any positives in this nightmare and this message board has been so helpful to me. Thank you x

Spookiesmom

At some point during the first time around seems like there was a ct scan. So many tests 7 years ago, hard to remember. No bone scans till I was ready to start AI. That was a baseline DEXA.

berries

bump

trinigirl50

I think most stage 3 would have had at least one scan. I had a CT before chemo.

MinusTwo

I had a CT w/contrast and also MRI before my initial BMX surgery. I found the recurrence two years later and it was diagnosed with an ULS. Then I had the same tests before, during & after my ALND surgery after recurrence. Because I don't panic at possible false positives, my MO also ordered several PET CTs during the process. I had the last one just before my port was pulled - over a year after all final treatments.

Edited to add - I don't get specific bone scans other than the DEXA scan every two years.

mpv459

I had a petscan prior to surgery in March. Will have a bone scan after I am done with radiation in November.

DodgersGirl

I had PET scan before starting treatments to make sure I wasn’t Stage 4 as treatment plan would have changed. After chemo and surgery, had a 2nd PET scan. That was 2 years ago. Had DEXA scan for baseline bone strength before starting AI. Will have another DEXA scan next year

Lexica

I had a CT and nuclear bone scan (not a dexa, which is for bone density not to check for mets) prior to starting treatment.

ErenTo

Standard of care for node positive patients is to do staging scans, typically CT and bone scans. I had a palpable node prior to surgery which was biopsied and confirmed to be cancerous, so I did my staging scans pre-surgery. Bone scan was fine, CT only found a number of hemangiomas on the liver which needed confirmation with ultrasound and a repeat CT post-chemo. It does cause a lot of anxiety, but necessary IMO. You can push for it if it gives you peace of mind.

I do wonder if a lot of recurrent early stagers were metastatic from start but never had any staging scan done. They were presumed early stage, did the initial treatment and responded to it and were NED for a few years until treatment stopped working and became symptomatic and then presumed to be a metastatic recurrence. It would be interesting to have some stats on that. Apparently stage 4 de novo is only 5-10%, but would it still be this low if everyone was scanned upfront?

berries

Very good thought... my MO ordered a CT and bone scan, but I'm just terrified to get them to be honest.

It would give me SO much peace of mind if everything was clear and I would be able to fight this happily, but on the other hand... I just don't know what to do as my anxiety has never been higher. I find myself holding my breath by accident and then I have gasp for air.

Ultimately, my MO said the scans were up to me. I'm torn. Has anyone felt this way? How did you get through it?

ErenTo

If I were given a choice I would have opted NOT to scan! But in retrospect I'm glad it wasn't an option.

I know how horribly anxiety-inducing this is, but if you don't have any unusual aches or pains and are symptom-free, there is a good chance your scans will be good and if in the unlikely event something is found, there is still a good chance that it's limited metastasis and you may be able to proceed with curative intent as if you're still stage 3.

berries

thank you all so much for your support. I do not have any symptoms other than aches on my mastectomy side exactly two weeks post-op. I have been a runner for many years, so I have a bum right knee that has always acted up. Other than this, I feel okay.

It truly is a mental battle waging in my head right now. The onc nurse just emailed me to tell me the orders were in, so I can make the scan appointments now, but I have been too afraid. My MO said the scans would be up to me and I could do them at any time.

I don’t know how to handle this as I already have berry high anxiety.

I do know however if (when) they are clear, I will truly be the happiest person alive. Never prayed harder

FaithAndTrust

I had no choice but to scan..i was shaking going into CT and bone scan..felt physically sick..the anxiety awful.

but when I got the all clear it was so uplifting and strengthening for going forward it was worth it.

ask your doctor for anti anxiety meds and try get the scans..good luck I really hope you get the all clear x

Nancy2581

I had a pet scan and a bone scan, but only because I had a positive node. That little positive node also bought my ticket to chemo. Ugh all is good though.

Nancy

Anonymous

I've gotten the whole slate as I am assuming its diagnostic Stage III (based on tumor size and node involvement) - CT, bone, MRI.

CT picked up something in pelvis, but its right at an existing injury site where I have had known arthritis and degeneration for (at least) three years, but they said liver and lung and everything else was clear. Unfortunately I seem to have been stuck with a breast surgeon consultant who has extremely poor bedside manner and a) didn't explain the entire outcomes of the scans b) telling me its not curable c) did this without correlating scan evidence and before requesting an ultrasound on the area d) didn't ask/know if I had a known pre-existing injury and e) appears to be primarily an endocrinologist. I was ready to walk out of there and start planning my funeral - going to get a new surgeon!

Get the scans - there is probably nothing to worry about but if there is, isn't it better to know, and have your team know, so everyone can plan appropriately and keep an eye on things? I am of the 'just be upfront with me' approach, though - I may not want to know, but this way I can know exactly the face of the enemy so I can monitor after this is all done and know when to raise my hand and say hey, this hurts or hey, this seems new. It will help you be the best advocate for yourself you can be.

JRNJ

Hi again vmb,

I have massive anxiety also, but mine is centered around not doing enough. So I want as many scans as I can get. And as discussed in my other post, I've been fighting tooth and nail for them. I think you should do them, in order to get the right treatment. But if it won't change the treatment, than up to you. I can't live with not knowing and assuming it has spread.

I've had persistent arm pain for months and a little something in my side. I asked for scans and they dismissed me saying insurance wouldn't pay for it. After finally freaking out they ordered CT scans and bone scans. I had the bone scan Thursday, clean. Insurance denied the CT scans before surgery, they appealed with new info, and now they are approved. But they said I should wait 2 weeks for swelling to go down. Now with my new results I am wondering should it be CT or Pet? They already said insurance won't pay for Pet. So frustrating!!!!!

Why do some people get CT and some Pet? Which is better? I thought it was Pet to catch anything early?

berries

I have massive anxiety of finding out anything, so part of me just wants to start chemo/treatment right away and refuse the scans. I'm honestly considering it, as it is giving me so much anxiety, I can hardly function. The thing I hate about this disease is that it doesn't allow you to think clearly... nothing in my head makes sense. I think about this 24/7 and there is not a minute that has gone the past two months that I have not thought about this.

It has only worsened and I've now resulted to taking medication to help (Lorazepam and Lexapro), but they do not seem to help. I don't know what to do.

JRNJ

vmb I understand. I have severe anxiety also. Sorry I'm not the best person to help you with that, I'm in the same place. I'm not a fan of anti-depressants. Tried them before, they make me nauseous. And they can't stop you from worrying. I take Lunesta, because a good nights sleep is key to feeling better. I was taking it before diagnosis for insomnia. It is extended release. Lorazepam or valium may help with sleep, but they don't keep me asleep. To the contrary when they wear off I feel worse. Ice cream is helping too, lol.

cathy67

Hi vmb,

My thought is exactly same as yours. I am very very scared of the scan, afraid of possible bone mets, though I don't have any symptoms.

I am always on six months followup, this time ultrasound found a 8mm lesion area, since it is a routine caught, I was not that scared at the beginning. Then after surgery, it turns out 21mm and node positive, and upgrade into grade 2 from grade 1 in the biopsy. Ultrasound has limits and it cannot detect the lesion's actual size, ... and my feeling is exactly as yours, I would prefer opt not to do bone scan, I just don't want stage 4 mark. Ultrasound shows up my armpit lymph nodes negative, then sentinel node got one positive.

What two months! Hugs!!!

mpv459

Everyone... I have been trying to get an answer to my anxiety with scans but am glad to find this post that kind of answered my question.. I went for a radiation consult yesterday and the radiologist is insisting that I do a petscan to restage prior to treatment. I had a petscan at DX, then surgery and 5 months of chemo. I am beyond terrified that the cancer has spread and they will discover it during a petscan. I would really like to get some opinions on this... did anyone have a petscan prior to rads?? My oncologist did not feel I needed scans so this came out of left field. Opinions??

MinusTwo

mpv - I think I answered your question on another thread. Yes I had my 3rd Pet/CT prior to rads. I think it's critical for the treating physician (in this case your RO) to have the clearest possible picture of what they are supposed to be treating. He/she has to map exactly where you will be zapped and you don't want any mistakes. And if you haven't had a PET since surgery & chemo, it is a very reasonable thing.

Get them to give you a low dose Xanax before you start because you have to stay absolutely still for 45 minutes after they start the contrast IV & before the test. This way you have the best chance of no false positives - which PETs are known for.

If you go to My Profile and fill in your stats and make it public, it's easier to see all your treatment to discuss it.