Pelvic /SI joint pain Radiation update

[Dragonfly2]

After CT and Bone scans in late September showed intense uptake at the site of the original pelvic Mets, I saw my ONC on Oct 3. All of September and now October, increasing back pain and nerve pain had led me to suspect that I had an SI joint inflammation brought on by the increasing activity in my Mets. The ONC said there was “no progression” but something was happening to aggravate the lower back and bring on those shooting pains and tingling in my leg. I had brought up the idea of a second round of radiation to knock back the Mets and give me relief….the Tylenol and naproxen diet was sometimes not so effective .

The ONC was not adverse to the idea of radiation but felt that an MRI was needed to prove to them that radiation was the best course…the ONC was hinting that maybe IBrance and anastrozole were running out of road since the tumor markers were consistently rising as well. Moreover, if the MRI shows spinal stenosis, that may be a whole other issue.

In the meantime, I’m looking for pain relief so she had an MRI scheduled…can you believe a 6 week wait???? I was flabbergasted when the appt was made …and then radiation consult schedule for the middle of November.

I wrote to the ONC asking for quicker intervention but days went by without any response so I called today and the nurse promised to let the ONC know of my concerns. I also said that there are Imaging Centers nearby that could be used with a referral if the local hospital can’t handle it.

So here we are….somehow a whole month and a half has gone by with increasing pain and no resolution for another 6 weeks…but I’m knocking on doors and making noise.

Interesting that my health insurance is telling me to “advocate for myself” but the health services are not keeping up with the needs. Apparently a backup of services going back to the pandemic is now straining the hospitals…

While I continue to view MBC as a chronic disease that needs a continuing stream of medications and procedures, it gets very depressing to be put on a waitlist and worry as my health deteriorates. Ultimately, I’m waiting to see when I can get an MRI and then have the Radiation dept determine if radiation is something that will help. I had my last Zometa Infusion on Oct 3, so maybe some of my increased discomfort these past few days may be from some lingering side effects. (I take Claritin for bone pain) but those knee buckling pains in my back scare me. and the tingling in my leg can be compared to a continuous elbow zing when you bump that nerve.

Thank you to all who have been inquiring about my situation and messaging. Onward and upward…and another Tylenol for good measure. ❤️‍🩹❤️‍🩹

[hopenowandtomorrow]

Thank you for updating us Dragonfly2. Sorry to hear of your ongoing health issues exacerbated by slow access to the diagnostic tools needed in our disease. It’s helpful to me to hear your symptoms & your ONC’s response. Please keep us posted!

❤️🙏❤️

[Dragonfly2 in reply to hopenowandtomorrow]

I will … the saga unfolds 😇

[Tam-56]

I'm so sorry you are in such pain. I recognize your description of "knee buckling" pain!

Keep after them...seems like hospitals everywhere are struggling these days. The squeaky wheel gets the grease! Hope you get your scan sooner so you find relief to your pain. Please let us know how you are doing.

[Dragonfly2 in reply to Tam-56]

thank you Tam…I hope I’ll be able to post some better news soon 🙏😍

[Hopeful4Cure]

I do too. Makes you want to drop to the floor. We try to advocate for ourselves and then I feel that we are still put on the back burner. We are all feeling your pain, because we can all truly relate. Hang in there. Blessings

[Dragonfly2 in reply to Hopeful4Cure]

Thank you...never give up!

[Hopeful4Cure in reply to Dragonfly2]

Winston Churchill said, "Never, never, never give up!" It is printed and on the wall in my office. A reminder to keep fighting.

[Nocillo]

I’m glad you’re the squeaky wheel. 6 weeks is crazy. Hopefully another facility can help you. Are you in a city or rural area? Country?

[Dragonfly2 in reply to Nocillo]

We are in a small town surrounded by rural...the imagining services company is in our state capitol, Concord NH. Neo a great distance for sure.

[Nocillo in reply to Dragonfly2]

That does seem to complicate things. Having to travel for treatments is never fun, especially when not feeling well. I hope you get bumped up the list!

[LibraryGeek]

I hope they get you sorted out soon. Here in the UK we have medical staff striking for better pay, many are leaving to work abroad where they are treated better or even leaving the profession, our waiting lists are getting longer and longer. Troubling times…

Jackie x

[Dragonfly2 in reply to LibraryGeek]

Oh Im so sorry ...makes me feel like Im whining while others have bigger problems. In parts of the USA a large Health Group provider is striking as well...their message is that during the pandemic we had hailed them as heroes for working through those terrible times... but now their salaries are not keeping up with inflation while CEOs are garnering the profits. So unfortunate; no easy fix. Indeed troubling times. Meanwhile, we the patients are left in the lurch. Do hope things improve for all.🙏

[Lulis in reply to Dragonfly2]

Yes, I had to wait a few days to schedule a CT with that provider because of the strike. My CT is scheduled in 3 weeks. I was hoping to get in earlier because I am starting to feel sharp pains in my right knee, sort of like spasms, especially at night. My tumor markers have consistently been going down, so I am hopeful that it's related to something else. Best luck to you.

[Dragonfly2 in reply to Lulis]

Thank you and best of luck to you as well!

[AvidBooklover]

Where are you being treated? Do they have a pain doctor? There is a huge issue with testing. MSK by me has brought in a new MRI imaging station and I hear are going to night and Sat appts.

[Dragonfly2 in reply to AvidBooklover]

we are a small town surrounded by rural places...yes our hospital has a pain clinic which I can access...but it's that MRI that is critical. Our current MRI is working 7 days a week around the clock... or as much as it can based on the staffing. thank you...yes making noise helps everyone!

[Kerryd22]

There’s a world wide shortage of radiologists apparently. There’s a sign in the nuclear medicine department at the major hospital I attend that warns outpatients that there’s a six month wait for an MRI and it’s been up for a long, long time. I’m scheduled for six monthly CT and Bone scans and my last was in May. The next scan was immediately booked (for December 4) to make sure I got in the queue. There’s no shortage of equipment or space but there’s a staffing issue. There’s been experiments made with AI and although I balked at the possibility of my scans being reviewed by AI rather than two humans the oncologist said the results from AI were superior to the humans. Emergency scans are available on short notice but getting any results reported takes at least two weeks. AI hasn’t gone into use but maybe it will in the future. I’d be okay if at least one human reviewed the scans and maybe that’s what they did.

Maybe while you’re waiting for the MRI you could request a short term script for Lyrica. It’s designed for nerve pain of the kind you’re talking about. Pain is debilitating and it adds to the distress when you don’t know what’s causing it.

[Dragonfly2 in reply to Kerryd22]

Thank you...and of course you are so right about the staffing shortage...AI will be in the works one day no doubt! thank you for the suggestion about Lyrica!🙏

[ba5083 in reply to Kerryd22]

Curious if you choose to use AI if you have the option to have previous scans read by AI for consistency. Seems my scans/MRIs are interpreted differently between radiologists. With new scans some radiologist comment or compare to previous scan when the radiologist that read the previous scan didn't make note of a finding. I suspect AI will bring a much needed consistency to reports

[Totheriver]

Hope you get your MRI soon and that you can be treated for what is going on💕

[Dragonfly2 in reply to Totheriver]

thank you...clearly it's the not knowing that complicates emotions!

[Totheriver in reply to Dragonfly2]

It sure does💕

[ba5083]

So sorry that you have to wait so long for the MRI. Many times hip pain can cause very painful back pain. Hopefully you will be able to get your ONC to allow use a 3rd party or different Imaging center for your MRI to get the results quicker. Seems crazy to me that it is taking so long to get tests/proceedures preformed today than what it did 4-5 years ago.

[Dragonfly2 in reply to ba5083]

I spoke with my health insurance coach today and she verified that it’s a lack of staffing after so many healthcare workers left or retired with the pandemic! It’s not going to change soon unless young people are enticed to enter these fields🤷🏼‍♀️

[mariootsi]

I am also finding that the medical system runs at a slow speed. I had to wait 5mths for a neurologist appt. and can't get an mri until December! We must remember to be aggressive advocates for ourselves as mbc patients don't seem to get any sort of priority.

[Dragonfly2 in reply to mariootsi]

Oh mariootsi, you are so right! So many of us are”old women” and we know how that works out….❤️‍🩹

[Figletf]

All the waiting must truly be infuriating 😩I have been fortunate at Moffitt Cancer in Tampa.Every test is scheduled quickly the day I see my oncologist.

So sorry you must endure pain that is the result of poor hospital care.😕

[love2golfwell]

I am so very sorry you are going through all of this pain and delays in getting your MRI. You have been through a lot lately and do not need more stress added in. I hope that your doctor will work hard to get you in earlier so you can get some answers and hopefully a resolution to all of the pain you are experiencing. Please know that you are in my thoughts and prayers. Sending you hugs.

[ClarenceO]

Ive had the same pains in the same areas you describe. Those electrical zappers are horrid. I have been working with a pain doc who has tried various methods and drugs but you’re right- the MRI tells the details needed. I kept calling each day for awhile to check on cancellations and was lucky to get in but I am not in a remote area.

In the interim, the doc gave me a Butran’s pain patch (15 mcg after starting at 5 mcg) and I requested a muscle relaxant (Flexoril) so I could do my PT exercises and a spasm medication until the MRI could be done.

For me, a year of OTC meds/ creams, homeopathic creams, vit/min supplements , antihistamines, CBD gummies and dry needling didn’t mitigate the pain at all. Chronic pain is exhausting and it makes any movement painful. I hope you get that MRI soon.

Suzanne