Scan results

[Onie54]

Got last week’s CT scan results today.

Pleural effusion is gone and lung nodules are marginally smaller! So good news for now 😊

[Onie54]

Keeping my fingers crossed for you! 🤞when do you go find out? I hadn’t heard back so I called and went in today to get the report.

[Onie54]

I wasn’t supposed to see my oncologist until March so I wasn’t going to wait for him to call. If he wasn’t able to provide the info then I was ready to go see my family doc for it. I can’t stand waiting, i think that’s the hardest part. I’d rather know one way or the other, good or bad.

Keeping you in my thoughts 🙏🏻

[Barbteeth in reply to Onie54]

Me neither..waiting is the worst..in fact I think it’s almost cruel to do so if they know the results and we’re kept in the dark

Sometimes assertiveness is needed

Barb xx

[Ange0901 in reply to Barbteeth]

Absolutely. I’ll of waited nearly 3 weeks when I get my results on Friday. It is cruel, it’s torture. And if the results are good then that’s 3 weeks of our shortened lives wasted worrying.

[blms in reply to Barbteeth]

All the time assertivenes is in order!

[Hidden in reply to Barbteeth]

Yep. one has to become the consumer from hell sometimes... but maybe as a retiree I have to amuse myself somehow!

[Barbteeth]

Marvellous news..celebrate each victory over this horrid disease

Barb xx

[Hidden]

Hi Onie,

That is good news! In terms of waiting for CT scan results, I asked my GP about that on Tuesday when I saw her for my Zoladex injection. I asked if I could receive a phone call with my scan results (but still see my oncologist in person) as I have to wait two weeks every time to get results. She said it takes that long for the radiologist to read them, so my best bet is to carry on getting the results directly from my oncologist when I see her. My next CT scan is on 12th February and I am due to see my oncologist on the 25th. It would be nice to get the results sooner, as the waiting can be hard!

Take care,

Sophie x

[laurac1014 in reply to Hidden]

I find it hard to believe it takes 2 weeks for a Radiologist to read them. I see the list of exams done daily, they read the ED exams first then get to the outpatient exams, most always the same day. Do you have an online "My Chart". I was able to Request Reports on there and have them online in a matter of a couple days.

[Onie54 in reply to laurac1014]

No online charts available here in Ontario, Canada

[blms in reply to Onie54]

Just curious, is this the only place your cancer has spread to? It is the case with me and if so, you are the only person so far I have communicted with this type metastatic diagnosis.

[Onie54 in reply to blms]

Mainly lungs (both have nodules) and cancerous cells in pleural space. They (radiologist) also said I had a cortical break in the sternum consistent with a local recurrence but my oncologist wasn’t so sure about that. Thought it might have been caused by previous radiation to the chest (I’m on zometa for this as a precaution, I think). So I’m still unclear about that myself. I don’t have any other bones mets.

What were the details around your dx?

Susie

[blms in reply to Onie54]

Just minimal pleural fluid below left lung and s little in lining of that lung. All else clear so far. It’s been a year and a half since spread and over 21 years since initial stage 3. Fluid has been gone fir over a year so I will see this week with dreaded scans

[Onie54 in reply to blms]

Prayers for good results 🙏🏻

[Sunnydaz in reply to blms]

This is my dx as well. Actually just in plural area. When we’re you dx?

[Onie54 in reply to Sunnydaz]

Officially in May 2018 after my surgery but found out in March 2018 after having a cold and getting an X-ray

[blms in reply to Sunnydaz]

Yes just plueral space for me as well, which means there is some irritation creating the fluid build up. Mine was lining of my left lung. I was origininaly diagnosed with stage 3 aggressive BC in 1998. The reoccurance was fall of 2017. So far, no fluid and lung is clear but going this Thursday for CAT and Bone Scan so we will see. My last scans were June o 2018.

[Sunnydaz in reply to blms]

20 years!!!! I hate BC! Praying for NED!

Mine is in the lining of the right lung. My original BC was in my left side. I’ve had pleurisy symptoms. I’m not sure if it’s because of the irritation of the lung or the drain I have in. My fluid stopped two weeks ago!

Robin❤️

[blms in reply to Sunnydaz]

Robin, same here! Original cancer 21 years before right side, pleural effusion left side with left lung nodules only. I had very little fluid and they did not think it was cancer for the longet time. I kept insisting that I thought it was and to do more and more testing until they did the thorocentesis to determine, whala! What were your FISh results? I have not had fluid at all for a year, it actually went away before I began Ibrance and was just on letrozole for one month. So who know if any of the drugs mattered with that. I had next scans last june with no evidence and now scheduled again this Thursday. So, we will see.

[blms in reply to Sunnydaz]

Where do you live and where are you treated?

[Sunnydaz in reply to blms]

I live in Florida on the E coast and I go to Mayo Clinic. My TM’s were 409 and went down almost 100 with just Letrozole! I wanted to wait for 3 months to see if they would come down to normal before Ibrance. My Onc wouldn’t hear of it. Now I will always wonder.

They first thought I was TN because they couldn’t get enough cells but I had symptoms for a long time and the tumor markers were so high. I’m estrogen positive, I’m not sure if they did Fish test. Probably because I was in denial for so long. I LOVE denial lol Where do you live?

[Sebina in reply to Sunnydaz]

Hi Robin,

I'm also being treated in Mayo, Jacksonville.

[blms in reply to Sebina]

Oh and I live in the DC area. My youngest son went to Stetson undergratd. He just flew home Sunday after a weekend with some friends out of Jaksonville airport

[Sunnydaz in reply to blms]

I’m familiar with Stetson. It’s a very good college. I live about 45 minutes from there. My daughter goes to upstate NY lol

[blms in reply to Sunnydaz]

Yep they always want to go away

[blms in reply to Sunnydaz]

I am strongly ER psoitive and PR positive and HER 2 neg. (which you are obviously).-maybe not the strongly and very aggressive part. you doctor would not consider giving you the letrozole without the ibrance because that is the current protocol dictated by big pharma--so it goes. They had to do the FISH test to see if you were HER 2 and give you Ibrance.

[Sunnydaz in reply to blms]

My Er+ levels are in the mid range. He said if the were higher he would let me do Letrozole only. 😞

[Hidden in reply to laurac1014]

Hi Laura,

It's hard to say really, but that's what I was told by my GP. I'm in the UK, so don't have access to the online "My Chart" you mentioned. But I can ask if we have something similar over here. My GP printed out my last pathology and radiology reports and let me have a copy of each. It would be nice to be able to access my records online though. I will look into it.

Thanks,

Sophie x

[Jerseygirl45 in reply to Hidden]

I get mine online also. Love it!

[Hidden in reply to Jerseygirl45]

That's good that you get your results online. I'm in the UK, and have to wait two weeks.

[Moon-and-Stars]

Great news 💪🏻

[Magsue]

Great news on your scans! I’m struggling with plural effusion and the meds are clearing liver Mets but not PE. They are talking Cathator to drain so I can do myself .. suppose to clear faster vs monthly draining at hospital. What meds are u on? I’m sorry to hear about the scans - I get an email from my oncologist usually same day or next day of CT! (Or phone call if bad) That’s crazy to wait 2 weeks. The Oncologist can read results - I’d push for news faster!! My oncologist at times over rides the read from the radiologist! We have to be our own advocates - worst wait time is head from a friend was a week! Best of luck

[Onie54 in reply to Magsue]

I’m on Ibrance and letrozole since May 2018. Although the pleura tested positive for cancerous cells I don’t think the pleural effusion (PE) was caused by that. I think it was caused by the lung wedge biopsy/surgery that I had prior to starting the Ibrance/letrozole combination. My scans were clear of PE before surgery so I don’t think the meds cleared it up, it was probably just time that cleared it (over 6 months).

I hope the drains help. Are you on the same meds?

Susie

[Magsue in reply to Onie54]

No I had to move to Afinitor and Flaslodex - my PE was the big concern - but now she isn’t too concerned ...says it will take time to clear or go the drain route since it’s uncomfortable. I honestly think I moved off Ibrance too fast —- but happy to see Liver Mets moving in the right direction. Is what it is... just want to head to mountains and the altitude makes breathing worse! Best of luck!

[laurac1014 in reply to Onie54]

I don't mean to be nit-picky, but the abbreviation, PE is for Pulmonary Embolism. This is actually something that may come up in our conversations. Something I hope none of us have to go through.

Susie, I wish you luck with the drains.

[Onie54 in reply to laurac1014]

Thanks Laura for the clarification 😊 but it’s not me with the drains although I did have a pleural effusion but it’s gone now.

[laurac1014 in reply to Onie54]

oh ( sorry ) good !!!

[Sunnydaz in reply to Magsue]

Hi Magsue,

I had a Plurax put in on December 24th. The last two weeks I’ve been under 50. They were draining 1 liter a week. Doing it at home allowed me to do it more often and keeping the pressure off of my lung. It just stopped one day! I hope yours works well for you.

[laurac1014]

FANTASTIC ! Bubbly or Ice Cream ? !

[Onie54 in reply to laurac1014]

I guess ice cream; can’t do bubbly cause of Ibrance 😕

[Barbteeth in reply to Onie54]

You can do bubbly..my oncologist happy for me to drink..there’s only grapefruit and pomegranate juice not allowed

Barb xx

[Onie54]

Thanks Sandra I think I will ask him!! 😊🤞

[Dima_]

Congratulations 🎊🎉

[Gwennie123]

Love good news!❤️❤️❤️

[PLASEM]

Thanks to God

[Mimigram]

Sounds like good news Susie!

[Hidden]

That is great news! I'm so glad you called to find out. The waiting is absolutely the worst.

[diamags]

That wait is really brutal. I get my scans on a Monday and results Tuesday morning at my onc appointment. (3 times per year) They do read them same day.

[Hidden in reply to diamags]

Yes, the wait isn't very nice. I will see if I can access mine online too.

[diamags in reply to Hidden]

One thing to keep in mind if you get early access to your results. If it's bad news are you going to go nuts not knowing for weeks what the next step is?

[Hidden in reply to diamags]

That's a good point. I honestly don't know, as that has not been my experience so far. I normally have a CT scan and then wait two weeks to get my results when I see my oncologist. I get them four times a year.

[diamags in reply to Hidden]

We're all different. I used to want to know everything yesterday until the found my met. After going stage 4, I found that if I were going to get bad news, I wanted to know immediately what we were going to do. So now, I wait to hear it from my doc. When it does go bad, he'll have a plan. And I'll need a plan!

[Hidden in reply to diamags]

I have had a think and I will stick with waiting to receive the results from my oncologist. After the panic I felt last year when I was diagnosed in the March but not starting treatment until May I would rather not go through that again.

Sophie ❤

[kduck]

Great news!!!

[Sunnydaz]

That’s great! I get my scan in March. Fingers crossed 🤞

[Cowgirl2]

Congratulations!! It’s always such a relief to get good news.