CRAZY TOWN WAITING ROOM - TESTS coming up? All Stages Welcome.
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berries - Positive thoughts coming your way.
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Thank you
I have been trying to page the on-call oncologist for the past hour and a half for my results. I had a breakdown this evening and my husband just told me to call. No one is calling me back which just makes me think something is wrong. This is pure torture. I am just hearbroken
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Berries, doctors are overwhelmed right now--here in IL specialists (and even podiatrists!) are being pressed into service to help out with the pandemic. (My husband, a cardiologist, sees COVID patients every other weekend, so I make him stay overnight Saturdays in a hotel and then when he's about to come home, shower in the surgeon's lounge, change into clean clothes and shoes and throw his scrubs & sneakers into a trash bag).
My own primary car doc is out sick (they're not saying with what, but he is the medical director of a nursing home), and neither he nor his NP have answered my patient portal messages about the cat bite I got on Sat. My derm is still not doing in-person visits (including full-skin exams) so there are no biopsies of suspicious lesions being done. My ENT appt. is June 22--postponed several times since Feb.--and I would be very, very surprised if she starts seeing patients again before Aug. (so I still don't know whether my unilateral pulsatile tinnitus is due to something that could kill me). And I doubt my M.O. will see me in person in Aug. for my 6-mo. checkup.
We're all on edge right now. So, because when I got bad news I got it right away, I would think along the lines of "no news is good news." I've got you on tonight's prayer list anyway.
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I had an endometrial biopsy and pap last week to screen for uterine cancer. This was last Thurs. She told me right there it'll be 4 or 5 business days. They're all busier nowadays. She'll call me either way. Just need to hang in there.
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Berries, I was a little older than you when I was diagnosed seven years ago. I know what you are going through. If you need to talk to someone, I am here for you.
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Berries ...sending prayers ..waiting sucks ..hugs
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thanks everyone. the on-call oncologist never got back to me last night. my husband used to be on-call and he never let 15 minutes pass before returning a patient's call, but i just never heard back even after paging them twice. i'm trying not to let fear get the best of me right now, but its hard. it seems like my onc is just waiting for tomorrow's appointment to go over things with me, which makes me think, is this mean its bad news? why are they ignoring me? do they not realize how important these tests are and that a simple, "all ok" can literally bring me down from the edge?
this is tearing me apart right now. i slept 4 hours and couldn't stop crying.
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Mary, my neighbor is a he and I do not think he really has any idea ov what it means to be stage 4, then again there are some things he and I just do not discuss as we are opposite, ie, anything regarding Trump or politics!
My onc had set up an appt to go over my pet, she always does, course now it is by phone nog in person. It doesnt stop the worry or nervousness but it does let me know when I get my results. It is generally about 3 days after the test.
Sooooo, yesterday she called me regarding my pet of last week. She has me enrolled in an immunotherapy trial. No idea what the treatment will be like or the stage or any thing but she said the onc in charge will call today, if I do not hear by end of day, call her.
Deep breath!
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Had to laugh yesterday. Put in a complaint to my town about a pothole across the street from my house. Figured it would take at least a week before anything was done about it. Was in the process of getting my breakfast when my hubby goes “Holy ——-! You’re not going to believe this but there three town trucks here to fix the pothole you put in a complaint about this morning!”
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<smiling about pothole story> My dog lovers to run unleashed. Put in a request for a dogpark in the south part of town, as well as a complaint about an overflowing doody receptacle in the same specific area suggested. The receptacle was emptied quickly, but I didn't see any construction activity happening.
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Berrie ..I really feel for you ..I know how awful the wait is ...hope you get great news today 🙏
Artista....hoping you have good news from your screening test too.
Iris ..sound good about the immunotherapy trial ..hope it brings great results for you !
Mommy and Mary...they would come to fix the pot hole here...7 men would arrive , and it would take them about a week to finish it ! They need lots of morning tea and lunch breaks a day !!!
Hugs to all
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Berries, it's been my experience test-wise that bad news never waits. Each time I got it (discovery of that first anomaly on my mammo, recommendation for biopsy, biopsy result, and the MRSA+ culture result on a mole biopsy wound) came w/in 24 hrs. The good news (favorable tumor profile both pre-and-post-op, OncotypeDX, genetic test, and mole biopsy negative for melanoma) took days to over a week. So "no news is good news" should be your mantra right now.
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Usually it takes forever when you put a repair request in for anything in the town. But to send three trucks to fix a small pothole was hilarious! It could have been accomplished with just the truck carrying the hot patch and one other truck!
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My Ct scan has become my worst night. I just go a phone call that 5 in my bones spots were seen on the CT that were not there 6 months ago. She said it might be metabolic changes from treatment or recurrence. My worst fear has come to light.
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oh wow, I am now entered in a trial program for a drug that is approved for bladder cancer, lung cancer and triple negative breast cancer. Manno o but they are moving fast to get all the details in line to begin.
More later, off to my wine.....
Tommorrow they want a cat scan !,,
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Berries, so sorry to hear that. But all kinds of things can cause a bone scan to "light up," including inflammation.
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Thanks Lucy and all. Results are clear. My doc is out till next week so another doc gave me the results. Televisit with her next Friday to see what procedures can help. Seems now it's narrowed down to fibroids causing pms symptoms and spotting/bleeding.
Good luck to all waiting for results. Hope it's all clear for you all too!
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Praying for you berries. I hope it's nothing bad. Sending positive thoughts your way.
Proud praying for you too. I wish you the best with the new trial drug. Enjoy that wine.
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my Mo is worried but also said it could be metabolic changes so I will be going in for a bone scan and biopsy
Below are the highlights of my report
BONES & SOFT TISSUES: There is a pocket of gas in the subcutaneous tissues of the left buttocks measuring approximately 3.7 x 1.5 cm. This may relate to medication injection. There is no associated fluid or fat stranding.
There are several new small sclerotic foci throughout the skeleton.
- Left lateral third rib (2/12)
- Left anterolateral fifth rib (2/25)
- Midline S1 vertebral body (2/88)
- Left femoral head (2/107)
- Two lesions in the sternum and manubrium (5/85 and 5/82)
The rest of the scan looked ok
I wonder if some of this could be due to radiation on the left side.
Regardless. My worst fear has come true and now I’m just in bed crying with my husband hoping to make it to 38.
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"Sclerotic" foci are not the same as "lytic" (erosive) or "metablastic" (growth) lesions. "Sclerosis" means a hardening. (And radiation does harden various tissues). They may not be mets. So take a deep breath and ask your M.O. when you finally get a chance to connect with her. The news may not be as dire as you fear.
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thank you, Sandy. You are sweet. I meet with her tomorrow so I will ask. Makes sense about the right side rib and sternum changes from radiation finishing up 4 weeks ago, everything is still very tender and red. But doesn’t explain the hip or back lesion so I’m trying not to get my hopes up. I will keep you all posted.
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Just heard from my primary care doc's office and the news isn't good: he is, in the words of his staff, "gravely ill" with COVID19 and in the ICU (they didn't say whether he is intubated); his PA tested negative at the time he fell ill, but now she's feeling sick (has already had both types of flu) and is being re-tested today (and she has little kids at home). Pray for them both.
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thank you everyone.
have you heard of anyone have bone lesions come up on their CT scans but be benign? i pray that is what it is.
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berrries ..sorry , I don't have words of wisdom about the scan , but I think of you often , and praying that it's benign. Hugs
Sandy ..so sorry to hear about your doctor ..praying for him and his PA ...also praying that they can make a vaccine for this horrible virus ...
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15 years ago, before I had breast cancer, a chunk of my hip spontaneously broke off. I was too young back then for osteoporosis to be a consideration, so my ortho did a full-body bone scan to look for bone cancer. (Especially since at the time, I was also suffering a weird hearing disturbance that my neuro-ENT thought might be a brain tumor, and he & my ortho suspected either bone mets from a brain tumor or vice versa). That area of my hip lit up. Turns out it was exactly the area where 7 years earlier, bone was harvested for the surgery that mixed the bone chips with epoxy to allow my shattered tibia to be pinned back together. Diagnosis: inflammation, from the spontaneous iliac crest fracture. And the brain MRI revealed a slightly distended Eustachian tube, which eventually resolved.
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Berries, I am praying for you.
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Berries, you are in my prayers.
Sandy, so are your PCP and PA. This is such a nasty, stressful time so prayers for all.
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Berries: my sympathies in re. tests and diagnoses and initial surgeries and chemo and reconstruction and chemo and the whole nine yards. Of all the times to be immunocompromised! Pull up a rocking chair on the porch of the CrazyTown Bed and Breakfast (social distancing built in these days, alas) with your choice of soothing drink.
As for me, never been so glad that my husband does my hair with a 1" clipper cut. And that I'm coming up to 5 years NED. The upcoming mammogram can wait...
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My next mammo (back to annual bilat. screening) isn't till Oct. I'm leaving my hair alone other than to wash & style it (and put it up in a ponytail & clip for sleep so I don't sweat into it and turn it into asymmetrical corkscrews). Sep. 23 (the date of my lumpectomy) will make me 5 yrs. NED too (fingers crossed). Will likely stay on letrozole a total of 6 or 7 years, per my MO's preference, unless I find the effects unbearable. (So far, so good).
Berries, continued prayers that your bone spots are from radiation, inflammation, and metabolic.
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