Mayo Clinic Connect
Just had a MRI and discovered bone cancer…..just informed a few days ago and was told to see an oncologist……will make an appointment ASAP…..what can I expect??
Liked by Dee, Merry, Volunteer Mentor, Becky, Volunteer Mentor
Hi @wolfhound1966, welcome to Mayo Clinic Connect. You'll notice that I moved your message to the Cancer group: https://connect.mayoclinic.org/group/cancer/
I did this to connect you will other members who have a type of bone cancer, like @ilovedaisies @danielad and @kristennursepatient. While we wait for others to join in, here's some info from Mayo Clinic
– About Bone Cancer https://www.mayoclinic.org/diseases-conditions/bone-cancer/symptoms-causes/syc-20350217
Wolfhound, do you know what type of bone cancer yet? Chondrosarcoma, Ewing sarcoma or osteosarcoma? Are you to see an oncologist first or a surgeon?
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Not sure yet I have an CT guided biopsy scheduled for this Thursday then I will know more…MRI showed a mass 4.5by3.2cc to the left iliac and the left sacral extension into left gluteal region which is why my left hip was bothering me. also small mass 2.8cc near spine. I have not seen any oncologist yet……my primary guy is waiting for the biopsy. I was wondering if anyone has had something like this problem.
Liked by Dee, Becky, Volunteer Mentor
Hi @wolfhound1966, I'm tagging @danielad and @kristennursepatient again in the hopes they can pop in and offer some tips and experiences.
I wish you all the best with the biopsy on Thursday. Did they send any information about visiting the hospital at this time of COVID-19? Some hospitals are restricting numbers and may not allow someone to accompany you. Are you going to Mayo?
Not even sure where to go yet…..I live near Portland Oregon…..I’m a VA guy and not sure what have to offer!
Liked by Dee
@wolfhound1966 Let me add my welcome to Mayo Connect, as @colleenyoung has also done. It's always scary to receive news like you have, isn't it? Do you have a support system around you, whether it is family or friends, who are able to rally to your side [keeping social distancing in mind, of course!] I am glad your dr is acting quickly in this matter.
Your doctor may have a cancer center he would refer you to, as there are several in the Portland area. I would poke around at their websites and see if there are any who have a Mayo-trained specialist. Not to sound one-sided, but I do know from my own experience, a Mayo-connected oncologist is the best around! I personally go to Willamette Valley Cancer Institute and Research Center, in Eugene. I know it would be a bit of a drive for you, at about 100 miles. But I drive from southern Oregon up there 115 miles each way. My dr is Christopher Yasenchak, a Mayo Clinic-trained specialist, who oversees my multiple myeloma [a blood plasma cancer].
We look forward to hearing from you after your CT guided biopsy today. We are here to support you through this time.
Liked by Colleen Young, Connect Director, Dee, Becky, Volunteer Mentor, wolfhound1966
@colleenyoung and all — I wrote a reply which "disappeared" in thin air … Operator error I would guess, but really frustrating!
I apologize for my "lack of presence" but have been very ill with severe dehydration brought on by a viral gastroenteritis. Was in the hospital, but was dismissed as soon as I could stand up! I didn't know you could have such terrible labs, EKG, CT scans, etc. and still be alive!
I was, and I am. Take heart everyone; there is light at the end of this, and many other tunnels!
Colleen, you are right, at least in Virginia, NO VISITORS in any hospital or surgery center is the mantra. My husband had to leave me at the front entrance of the ER and picked me up at the Hospital Main Entrance when I was dismissed, 2 days later! It makes for a VERY lonely experience. Of course, most of us don't go to a hospital ER unless it is an emergency. Still, though happy they could try to make me feel better, finding yourself "totally" alone is not a great feeling.
We need to consider perhaps how to discuss this particular aspect of going to any ER or any hospital and being psychologically prepared to be alone, for hours and/or days. It's a new experience for most everyone. I am not one requiring a lot of company at all; I had my cell (with my charger) and kept in touch with my family. BUT it was a psychological challenge.
Particularly so when suddenly, every cell phone in the ER, and every speaker began to blare out the strident sound of an alert. I just happened to have a doctor by my side … The looks of fear and confusion I saw in her eyes were unmistakable … I quickly looked at my phone and it did not show the usual "This is a Test of …". It was THE real thing. The Governor had just ORDERED the entire Commonwhealth's (non-emergency essential) population to stay home and all medical facilities and personnel to prepare for a ramp up of COVID-19 patients. I felt I was stopping traffic!
Again, I apologize for being "absent" in the past few days. I couldn't control nausea or vomiting and reading made it worse, of course. Before I try to post this, I also wanted to add that I am going to have a series of tests for "potential" bone cancer … All of which will be postponed for a while, given the situation we are in. So, I am not going to be terribly useful at present. That said, I send my best wishes to @wolfhound1966 and anyone else who may be struggling with a bone cancer diagnosis.
I have taken another nausea pill … but it is best if I stop reading, writing, and even "thinking" and take another nap.
Stay in the game. Don't panic, it is going to get better in a few weeks.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor, cehunt57, Merry, Volunteer Mentor ... see all
@danielad Thanks for checking in, Dee. I'm sorry to hear of your lonely, uncomfortable hospitalization. It must have been an eerie experience as the sirens blared! I hope that very soon the nausea becomes a thing of the past for you.
Please keep in touch as you are able. Wishing you all the best with the medical tests yet to come.
Liked by Dee, cehunt57, Merry, Volunteer Mentor, Ginger, Volunteer Mentor ... see all
@danielad, your experience of going to ER during these times of COVID-19 would be a good discussion to start in the COVID-19 group. Here's how:
1. Go to the COVID-19 group https://connect.mayoclinic.org/group/covid-19/
2. Add a short descriptive title like “Going to ER for non-COVID emergency during these times"
3. Type your message, telling your story. End with a question for others to add their experiences too.
4. Click CREATE DISCUSSION
Thanks for doing this.
Liked by Teresa, Volunteer Mentor, Dee, cehunt57, Merry, Volunteer Mentor ... see all
Hi @wolfhound1966, like @gingerw, my thoughts are with you today as you get your CT-guided biopsy. I'm sure you're exhausted after your day. When you feel up to it, I'd like to hear how you're doing and what you learned.
@wolfhound1966 Good morning! Checking in with you to see if you have heard from your doctors regarding the CT guided biopsy from last week/ How did it go? How can we help you today?
@danielad Hello Dee,
I just wanted to check-in and see how you are feeling. Are you still having a lot of nausea?
When you feel up to it, I'd love to hear from you.
@hopeful33250 — Hi Teresa. Thank you for the message. I am recovering, but feel pretty poorly still. I am still nauseous, mostly in the morning. My 46 year old daughter made the comment to her brothers – "Oh my! Mom is Pregnant!" Too funny! And no, I look very young, but I would make History if I were! 😀
This afternoon, I have a "Telemedicine" appointment with my Radiation Oncologist. My first such appointment! @colleenyoung will be very proud of me! So I downloaded "Zoom.us" and I am ready to go.🙂
Thank you Teresa! Stay healthy!
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor, Becky, Volunteer Mentor
@colleenyoung — I have started the discussion entry you recommended, but didn't continue …. Still the nausea issue. I will do it! Dee
Good to hear from you, Dee! That is great that you started the new discussion, thanks for doing that.
I hope your telemedicine appointment goes well this afternoon. Will you post again?
Liked by Becky, Volunteer Mentor
This is what I have going on!
Metastatic adenocarcinoma involving skeletal bone with unknown primary site
Of course I googled it.,,…doesn’t look good but have an appointment with an oncologist next Thursday. A plum sized mass….. hell of a run but now time to regroup. Anyone know about my problem? I’m hanging tight here in Portland Oregon.
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