Bone Mets Thread
Comments
-
yup Sadie!! I am definitely canceling my appt tomorrow. I have too much going on right now with the bone scan and MRI stuff that I just mentally Don’t have the energy for my vag to be poked and scraped right. Sometimes I don’t think PCPs are thinking clearly and they are simply “following protocols.”
0 -
When we're in "their system," these reminders are automatically generated and sent out (PAP's, Mammo's, Poop Tests, etc.). It's difficult to get them removed from your electronic medical file unless you ask them to remove them SEVERAL times. I still get asked about PAP smears - they always say, "You're overdue..." So I just ignore them when they show up and go on about my day.
0 -
I stopped Gyn exams when I was 60 because of excruciating pain at pap and pelvic. Doctor agreed and would stick with breast exam and mammogram. I had uterus removed at 26 and never had a questionable pap. Onc never speaks of mammogram. I have pet/Ct every 4 months and MRI(lumbar and thoracic with and without contrast) when pain management wanted to evaluate what could be done if it was structural. BINGO-activity that two doctors discussing if it is old and slow since treatment began but doesn't think that is causing the pain. My thought nerve damage/waking up nerves like after lumpectomy. My guess.
Starting new rounds of radiation at 1:00pm to adjacent treated area. I feel like I can see my end closer than before but when I look at you guys that have pushed through much longer than I have I try to see glimmers of hope
0 -
I had total hysterectomy so I was told no need for Pap smear anymore...
0 -
thinking of you JoE!!!!
0 -
Thanks, JoE and InToLight, for the Zometa information - very much appreciated.
JoE, best of luck with the radiation - you got this!
0 -
My MO says a PET is the gold standard of scans for cancer yet medicare will only pay for 3 per diagnosis. Nevet said when he'd prefer to use them. I'm not on medicare for a few years yet as I'm only 62.
Here it is standard at initial dx to get a Pet for staging. Then its CT and bone scans every 3 months at first. Once stable after a year my dr went to every 6 months.Then its an MRI if scans warrant or a new pain develops.
Always surprised to hear that there isnt a standard protocol for follow up and treatment. I would think by now they would have figured whats best and ultimately save some bucks and even lives! Ugh.
Gailmary
0 -
Gailmary, if you are in the US and have enough work credits, you probably qualify for social security disability.
They will pay the amount you would get at full retirement age. Also, since your metastatic diagnosis was almost two years ago, you could be going on Medicare this fall (after a 5 month waiting period)
There is a compassionate allowance program which will fast track your online application. Mine was approved in only ten days last month. Look into it!
0 -
I have asked the question before about why the different standards for PET, CT, bone scans, etc., and there doesn't seem to be a solid answer. My onc uses PET scans, but I am on Kaiser so it is all inclusive. I received one every 3 months for the first 18 months, then every 6 months since i have been so stable. She likes to compare the results, and the facility where she is located has a PET on the property. It only takes me 2 weeks to get a scan appt. In fact, I have a scan scheduled today so we will see how I am doing. The last one showed a slight uptake in one tumor so I am a little anxious. I had many tumors initially so this is not that bad. I have been on I/F for 32 months now.
All that being said, I appreciate all of the discussion and research on next steps. There is no need for a mammogram for me with so many PET scans. And Lita is correct the reminders are automatically generated. My tumors are not in the breast anyways but appeared de novo in the lymph nodes. We are all so different yet our fears and stresses are similar.
Take care my friends.
0 -
Hi All,
I was just diagnosed and am new to this community. I am 38 years old and my cancer recurrence has spread to my sternum for sure, I had a core needle biopsy. Going to get results of my bone scan today and I have a PET scan scheduled for Friday. I am looking for stories of encouragement and survival. Still learning how to navigate the site but just want you to know I am a new member of the bone met community.
0 -
It's good to meet you, chloesmomandcgswife. You've come to a good thread with the helpful folks here. Keep us posted as you find out more info and get a treatment plan in place.
0 -
welcome chloesmom - sorry you are here with us but you are in a great support community full of incredibly smart and loving people who are happy to help you the best we can ❤️
I finished my nuclear bone scan...had the injection at 8:30am and then the scan was from 12-1:15pm...took longer than usual because they took extra imaging of my cervical spine. I could hear the techs chatting but couldn’t figure out what they were saying. Can’t tell if it is a good or bad omen when they say, “good luck!” as they see you off :-/ I wasn’t really anxious initially but now I feel a bit more anxious while I now have to wait for the results. Meh!
My condolences to the passing of Dianarose. I am so sorry for this loss of another person to cancer. It sounds like she is in a more peaceful place now. Hugs to all.
0 -
wow that was fast! Heard from MO just now. All is good!!! The MRI showing abnormal results was a fluke!!!! I don't have any newmetastasis in my cervical spine!! What a huuuuuuuge relief!!!! Whew!!
0 -
so very glad to hear this news
0 -
Excellent Philly. So very happy for you
0 -
Chloesmom, I hate it that we're welcoming such a young woman to our group. But there are so many good news stories here and advances in treatment that you will surely find comfort and guidance. In some ways, the time between diagnosis and starting treatment is the worst. So many questions and unknowns. Your upcoming scans will chart your course and then you can settle into a plan. You've been through this before so you know the drill. Fire up your personal support team and gather trusted medical advisors around. Then come to us with questions and we'll help you to the best of our ability.
LovefromPhilly, jumping on a table and doing a Dance of Celebration on your great news. But so sad to hear of Dianarose. Somehow I missed that post.
0 -
Philly! Such relief. Great to hear.
0 -
omg I am so happy and so exhausted!!!!
0 -
Great news philly!
Chloesmom- welcome, sorry you are joining us here! I'm a relative newbie myself. I was Dx with mets late October and started my tx plan November 20th. I just had my first set of scans since Dx and am waiting on results now. I probably won't hear anything until my appointment on the 14th.
I don't often know what to say here but I do read all the posts and ask questions sometimes.
I wish everyone all the best on this journey
Cheers
0 -
so happy for you Philly! Isn’t it so crazy to be absolutely exhausted after great news?! hey, we will take it when we can getvut
0 -
Love from Philly - great news! So happy for you!!!
Chloesmom - I just did a long post on another thread that was intended for you.... you can read all about my extensive bone metastasis and how I have "recovered"... it's the Life Does Not End with Stage IV thread! I know it's absolutely terrifying. This site and these women are wonderful, and a wealth of knowledge, support and friendship.
XO
Andrea
0 -
Jen...I worked in a radiology facility for over 20 years. When we had a patient with "most likely benign" calcifications, our radiologists suggesedt a repeat mammogram in 3-6 months. I would not feel comfortable waiting for a year. Often times, they would suggest an ultrasound.
Sadie...My MO said mammograms are not necessary since I have metastatic disease.
Twiggy....The only scans I've had are CT with oral and IV contrast and nuclear whole body bone scans. I have these every 4 months.
Chloesmom...Welcome! You're in a good place with lots of information and support
Philly....Wonderful news!!
I had my 4-month scans today. I will see my oncologist next Friday. Hopefully, I will get good results. I asked the techs how long it would take for my doc to get results. She said they get them within 48 hours.
Have a peaceful weekend!
Hope
0 -
thanks everyone and yes chemokazee totally funny to be exhausted from great news!! I slept almost 12 hours last night!! Definitely recovering!! And also celebrating!!
Happy Friday to everyone - hoping we all have a lovely and ease-filled weekend ❤️ and 🤗
0 -
hope keeping you in my thoughts!
Snooky - thinking of you!! Holding you in my thoughts too! I loved the Jewbu comment 😂
Good luck with your scan results Sherry! Please keep us posted if you feel up to it.
JoE thinking of you! Hope the rads are not too bad.
❤️🧡💛💚💙💜❣️❣️❣️❣️💜💙💚💛🧡
0 -
Thanks Philly, I was really freaking. Layed on couch for two days shaking. FInally called my sister. Woke up this am. feeling like my self again. I had let fear (of the unknown) get to me. Geesh
0 -
Hello to everyone...I had a mastectomy 8/1/18 stage ILBC. I started Anastrozole Dec 2018. I have had a bottle of Ibrance for 1+ weeks ...I am frozen to take it.
I had such a bad experience with chemo (2 infusions put me in hosp in Oct w/ Severe infection and CT scan showing extensive bone mets.) Ibrance is a chemo and the side effects just freak me out.
I just had MRI of thoracic cervical spine and shoulder. I have a torn rotator cuff. Seriously what else. PT for that next week.
I started to read some of the posts here and my heart sends hugs to all who have been going thru tough times with there DX/treatments.
To all who are in a good place...you give hope and cheer as you share your experiences.
Thank you....support is so appreciated.☺
0 -
Bootsie, have a look at the Ibrance thread and post your concern there also. I'm on a different CDK 4/6 inhibitor which I describe to people as 'oral chemo' but it is actually considered to be targeted therapy.
The side effects are really not that bad. You will get a week off every month and have your blood counts monitored. If needed, the dose can be adjusted so go ahead and start taking it!
Also, make sure your physical terrorist (therapist) understands the extent of your bone mets. Some of them can be a bit aggressive in their zeal to help folks through rehabilitation.
0 -
Bootsie- I was on Ibrance for about 3 1/2 years. By far, the easiest regimen that I've ever been on. Literally no SE for me so go for it! I think you will be pleasantly surprised...
MM
0 -
Finished #8 radiation treatment on back today. Still have 6 left and it's really been a breeze but pain in right hip has steadily increased and is effecting my mobility. RO spoke with me and recommended my pain doctor request MRI of that whole area. If it's spread there he can treat it, but if it's coming from the sacrum he treated last year he can't help there. I have labs Monday, Pain management doctor Tuesday and oncologist visit Wednesday so I'll be able to ask lots of questions.
My QUESTION to you ladies : anyone facing cancer returning to treated area in bones? If so, what is your path of treatment if there is one. I feel like Alice who fell down the rabbit hole. I never thought the cancer would stop but I didn't let myself think about recurrence in treated areas.
Feeling hopeless for the first time since 2012
J0 -
Oh dear JoE777, that does sound discouraging. Is there any chance of interventional radiology working their magic on you? My thoracic spine discomfort was relieved by vertebroplasty with bone cement preceded by ablation. I then went for a short course of rads which burned my throat, making it hurt to swallow. Lost 5 pounds.
The question of additional radiation to the same area has not come up for me yet. However, I find the technology available to be amazing so if anyone suggests an IR procedure, it's worth a try!
0
