Share important questions and provide support to others experiencing breast cancer and treatment-related pain.
Posted on: Jul 23, 2018 10:13PM
I searched this topic but couldn't find any answers despite a number of posts about it. I feel like I probably shouldn't be too worried, but it's hard not to go there. I've always heard the "any concerning symptoms lasting more than two weeks" thing.
I started having pain in my tailbone or coccyx probably five weeks ago or so. I did not suffer any type of injury nor did I take up any type of new activity. At first I thought that maybe I had just been sitting too much or in an odd way or something. I think that I have lost some of my gluteal muscle mass. But even with adjusting my sitting posture and sitting less, it still hurt. Now it hurts even when I lay down in bed at night.
I saw my MO today. He asked if I wanted him to examine the area or just see my PCP. I opted for the PCP because I got the idea that he thought it was nothing. And honestly - I'm not sure that there's anything to examine. He mentioned my PCP ordering an xray if he wanted.
Has anyone else had this? What was the outcome? Diagnosis? How long did it last?
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Posts 1 - 28 (28 total)
Sep 10, 2018 08:36PM NotVeryBrave wrote:
No weight loss. I did end up seeing my PCP and had an xray done - negative. He recommended taking an anti inflammatory on a regular basis for two weeks, but I couldn't do that since I was having a colonoscopy and endoscopy. That showed a bunch of reflux and gastritis so I've been hesitant to take something.
I still have the pain. It's worse with sitting or getting up from sitting. Bending over hurts, too. I think it may be related to more driving and my car seats. I'm going to try a cushion for tailbone injury.
Sep 10, 2018 09:34PM DLJ46 wrote:
Hi-I too am suffering with tailbone pain for a few months now. MRI of tailbone and pelvis were normal. It feels worse if I sit on a couch or lie on my back in bed. So I try to keep my spine straight and supported when sitting. I also have an “egg sitter” from Bed, Bath, and Beyond to alleviate the pain when sitting. I sleep on my side at night to help with the pain. I have lost 10 pounds while going through treatment of lumpectomy, chemo and rads for Stage 1 TNBC. Treatment completed Nov 2017.
Also I was diagnosed with osteoporosis through a dexascan a few days ago. So I am not sure if that has anything to do with the tailbone pain. I am waiting to follow up with a doctor regarding the osteoporosis.
Sep 10, 2018 09:45PM - edited Sep 10, 2018 09:45PM by Lula73
I've had the tailbone pain for years. Last car even had memory foam seats and no relief. New car has adjustable lumbar support. If I do the lumbar support all the way out it feels unnnatural to my back at firstbut takes all the pressure off the tailbone. Worth trying if you have the adjustable lumbar support in the car or you can purchase one to put in your seat
Sep 10, 2018 10:04PM edwards750 wrote:
DLJ46 - I feel your pain literally. I have osteoporosis and it’s located in the tailbone. It’s really painful sometimes. My internist said I don’t have any fractures so it’s osteoporosis causing all the grief. There were times when I was driving and had to park the car and walk around because sitting was so uncomfortable.
I bought the donut seat too at Bed, Bath and Beyond. It does help. I sleep on my side too so I have to shift from side to side to get comfortable.
I have the Dexa scan every 2 years. I take calcium, Vitamin D3 and Boniva(1xmonth).
I’m fairly active which helps too. I wouldn’t wish this on anyone.
Sep 11, 2018 07:42AM NotVeryBrave wrote:
I was diagnosed with Osteopenia last year - not sure if that has any bearing. I take Calcium with Vitamin D twice a day.
The lumbar support makes sense since if I sit leaning forward then the pelvis is tilted and the pressure is off the tailbone. I, too, sleep on my side but shoulder issues make it difficult to get comfortable.
Sep 11, 2018 10:53AM DLJ46 wrote:
Thanks edwards750. Is it your oncologist who monitors the osteoporosis or did you see another specialist? I just turned 48 when given the osteoporosis diagnosis. My oncologist emailed that obviously the osteoporosis “needs to be addressed”, but has not followed up yet to my emails. It has been about 10 days.
NotVeryBrave-I also had frozen shoulder/partial AC tear so side sleeping can be a challenge as well, but I manage somehow.
Sep 11, 2018 06:17PM edwards750 wrote:
No I haven’t seen my oncologist since I hit the 5 year milestone 2 years ago. My internist manages my osteoporosis. My oncologist did order the Dexa scan when I was seeing her but I still have it done every 2 years only my internist orders it now.
Your oncologist is correct that it needs to be addressed. It can lead to fractures, etc if it isn’t treated.
Oct 22, 2018 10:15AM NotVeryBrave wrote:
I'm revisiting this topic. I still have the tailbone pain - since June/July. I've had a normal xray. I've done two weeks of Aleve twice a day for inflammation. I've used a special cushion in my car (where it's the worst). Nothing seems to help.
The pain is not debilitating. It's sometimes pretty bad - usually with getting up after sitting for a while. Cushioned surfaces are actually worse than hard ones. But it hurts with bending over and even laying in bed.
I'm seeing an orthopedist later this week. I'm afraid that there will be no answer.
Anyone else have success with anything?
Oct 22, 2018 11:25AM GG27 wrote:
I debated whether to post this to you or not, but I thought that I would have appreciated someone telling me their story.
After a year of telling different Dr's about my tailbone pain, I was sent to my surgeon on a completely different matter. As an aside, I mentioned this tailbone pain, he sent me for a bone scan. It was mets to my sacrum. I had it radiated 4 years ago & it has not bothered me since. good luck, GG
Oct 22, 2018 01:47PM edwards750 wrote:
I hardly have tailbone pain anymore. I think my internist was right - she DX it as a flare up from osteoporosis. I had debilitating pain. It was relentless for weeks. It’s fibally leveled off. The donut seat does help me. There are also exercises you can do if it’s eithef of those DX.
I hope you don’t have anything as serious as bone mets and it’s something lesser like sciatic nerve pain(chiropracter’s DX) or osteoporosis as in my case. Regardless I would definitely find out.
Oct 22, 2018 03:38PM - edited Oct 22, 2018 03:41PM by JoE777
Not Very Brave, you sound like me last year. Three rounds of X-rays showed nothing. Orthopedic sent me for an MRI and found 5 tumors along the sacrum joint. After full DX had mets to the lungs with no symptoms. Push for MRI OR PET scan. I was in pain for 6 months before diagnosis. Radiation took care of the pain Good luck.
Oct 22, 2018 05:34PM edwards750 wrote:
My internist checked for fractures and said she would do an X-ray but didn’t think it was necessary. The chiropractor was sure it was the sciatic nerve. I never considered it might be something like you guys have been DX with.
It was very painful to be sure for a month or so and then it just stopped. I didn’t do anything different but use a donut pad to sit on and I don’t use that much anymore. Did you have any other symptoms? I didn’t experience pain bending over but early on I did suffer with pain at night when I laid on my side.
Good luck. Hope you get some relief.
Oct 23, 2018 10:46AM NotVeryBrave wrote:
I appreciate the responses - even the scary ones. My mind goes there anyway.
It just seems really weird to have this pain and have it continue when I haven't done anything to injure myself. Well, nothing beyond chemo, surgery, meds, ...
I feel like cancer should be not very likely since I had a pCR, but I know there are no guarantees. I finished chemo in April 2017 and Herceptin in January 2018. I have not been on hormonal therapy because of concerning SE's and problems determining menopausal status. That worries me, but isn't really something I can control.
I had an abdominal and pelvic CT in August as a follow up to some concerning endoscopy findings. The report does not mention tailbone or spine (was not for that). It does say it went to the pubic symphysis and says "bone windows" were normal.
I guess I'll see what the doctor says tomorrow.
Oct 24, 2018 10:28AM NotVeryBrave wrote:
Update - I saw the orthopedist this morning. He was able to pull up my xrays and the CT images and review them. The CT did show my tailbone so that was good. Nothing concerning was seen on either of them.
He thinks that this is related to the weight loss I've had since treatment. It isn't a huge amount, but I guess it was a lot in my butt! I used to weigh 125-130 and now am 115-120. He equates it to almost a "bedsore" situation, where I don't have much soft tissue covering the bone there.
The treatment? Staying off the area! Using the donut pillow ALL the time and reducing my sitting as much as possible. I'm willing to try that because I've mostly just done that to help - not consistently. If not improved in 6 weeks with active attempts to decrease pressure then he'll order an MRI to further evaluate.
He seemed surprised that I had never had a PET scan with the original questionable nodes and Stage II. Because I was HER2+ and required chemo and not treated in a university setting, I think it was not considered imperative that further work up be done in the beginning. In any case - the cancer was very chemo sensitive and none was found at the time of surgery.
And so I plod on ... hoping for the best and never quite believing it.
Nov 4, 2018 11:53AM DATNY wrote:
Thank you for the update! My pain started during H&P treatment and continued after the treatment ended in August. Now they found I have osteoporosis in my spine from a DEXA spine. Maybe is related to that? The doc also said most likely related to my 20-30 lb weight loss.
Nov 4, 2018 06:26PM NotVeryBrave wrote:
I do have mild Osteopenia. That was not mentioned as a contributing factor, though.
I'm having a really hard time staying off my butt! The cushion helps in the car but is uncomfortable on the couch. If I stand a lot then my knees and feet hurt. Sometimes I feel as if I'm about 80 years old instead of 52! And it doesn't only hurt when sitting. It also hurts if I bend over and sometimes even just laying down.
I really think that if it's due to weight loss then building up some more muscle would help to "lift" me so that the area wouldn't be pressed on. I just don't know what kind of exercises to do. Yet another thing to figure out. Endless.
Nov 4, 2018 09:05PM NotVeryBrave wrote:
It's not terrible or constant. It's sometimes pretty bad when I'm trying to get up from sitting. I'm just tired of always having something that's a problem.
Nov 19, 2018 09:10AM JoE777 wrote:
I had tailbone, hip and butt pain. 3 rounds of X-rays didn't show anything. My orthopedist ran an MRI and 5 lesions popped up inside the bone. Pet scan showed tumors between 1&2 cm clearly . I also had multiple nodules in my lungs with no symptoms. Push for difinitive scans.
Nov 19, 2018 02:55PM edwards750 wrote:
I had excruciating tailbone pain months ago to the point I had to pull over when I was driving because it hurt so bad to sit in my seat. I went to a chiropractor and he said he thought it was the sciatic nerve(didn’t do xrays). He gave me some exercises to do and of course scheduled future appointments. Exercises did help.
In the meantime I had an appointment with my internist and told her what was going on. She examined me and said there were no fractures and she believed the cause was my osteoporosis because that’s where it is. She didn’t see the need for X-rays.
I did buy a donut pillow and it helps and since then I have not experienced that kind of pain again. I do periodically do the exercises when I feel kind of stiff. It never occurred to me it could be like bone mets and thankfully it’s not.
Lung nodules are very common and the vast majority are benign. They showed up on an X-ray I had done a few years ago and the radiologist said they were nothing to be concerned about. Lots of people who live where I do have them due to believe it or not a bird virus. They can be in your lungs for multiple years like my sister’s were - 20+ years. However, if they get larger it could be something more serious from what I’ve been told.
Good luck with finding some relief. Btw I am hyperactive so I don’t sit around much anyway.
Nov 19, 2018 04:44PM Alicethecat2 wrote:
Hello Not Very Brave
You're only two years or so after chemo etc so I hope you are being kind to yourself!
In case this helps, I had a similar pain on and off for two or three years after chemo. I think mine started when having to sit at a desk again for long hours.
Nothing was found by my doc or bone scan.
Could you ask about any stretching exercises you could do?
This worked for me. Gone now.
Hoping for relief for you.
Nov 19, 2018 06:09PM DATNY wrote:
Thank you all for replying! The tailbone pain started while on Herceptin and Perjeta. Since I had pCR, I don't know what to make out of it. I do have osteoporosis, 70% bone density in my spine. So the question I keep asking myself is to scan or not to scan? It is reassuring some of you had similar pain and it turned out to be nothing. Also, if these are mets, and they developed while on treatment, then I guess there is not much left to do for me. Thus, I cannot see a clear benefit in scanning.
In addition to tailbone pain, I have sternum pain. This goes back to chemo time, when it first showed up. It is annoying because I have to be careful if I want to hug people. I am pretty sure it is the bone which is painful when I press on it. In addition, the whole radiated area is painful, perhaps there is some mild LE going on, but that is a separate feeling from the one I get when I press on the sternum.
Nov 19, 2018 09:27PM NotVeryBrave wrote:
Thanks for everyone's input - the good and the bad. I feel like I was a reasonably healthy person who happened to get cancer and the treatment ruined me or something. It's gotten to the point where I worry about seeing any doctors, having any tests, or taking any meds. There never seems to be a clear reason for anything, a definite answer or plan to make anything better.
On the one hand - I cling to the pCR and tell myself that it hasn't even been a year since I finished Herceptin. I've had a negative xray and CT. This can't be cancer! And yet - it never completely leaves my mind as a possibility. I worry about not being on any hormonal therapy (long story). I worry that it hurts a lot sometimes, even though I try to use the tailbone cushion or lean to the side or forward.
IDK. I have so many aches and pains that I feel ancient. I saw a Rheumatologist about a year ago for similar feelings - no tailbone problems then but the elbows, wrists, fingers, knees, etc. At that time, we ended up deciding it was probably r/t the Cipro I had been on for an infection. Between Meloxicam and a Medrol pack (as well as some injections in my shoulder), that got fixed and I felt normal-ish for a while. I have an appt scheduled to see him again now. And I'll probably request the MRI from Ortho.
My insurance probably loves me ...
Nov 20, 2018 07:15AM edwards750 wrote:
Notverybrave - I bet you are weary and concerned from the constant aches and pains. It’s seems never ending once we are DX. I know we all worry in various degrees that those aches and pains mean the BC is spreading. It’s understandable given we are managing our cancer not curing it.
My internist recommended I take something to deal with my anxiety because I’m a worrier by nature so all these fears just added to my anxiety. I do take something and it does help.
It’s ironic that when people hear we have gone through the treatments they deduce we are cured. If only...not trying to sound like Debbi Downer just trying to be realistic.
I’m blessed I’ve passed the 5 year milestone +2.That’s something.
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