Hi!!! I hope this post finds you all HAPPY in spite of your current situation. I pray every day for all of us! 💗🙏🏻💗
My question today: Has anyone had a painful pinch in their groin that stems from their hip? I had an MRI about a month ago and it’s showing nothing. Sometimes I lose strength in my leg, too. I had a bit of a scare the other day while driving, too. My leg was so weak that I almost couldn’t lift it to step on the brake!!
All the reading I do points me to a hip issue. I’m so confused as to what is causing it. I’m going to bring it up with my oncologist (again). I’m thinking I would like a referral to an oncologist orthopedic that may get to the bottom of it.
Any insight would be so much appreciated!! I like to be prepared for any scenario I may encounter on this long, strange, trip I’m on. 🙏🏻
Best to you all!!
Jody
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CTGirl1962
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I suspect it’s probably more from my spine mets, as well. The MRI stated all the “issues” with my spine, but nothing related to this darn pinch. I will get to the bottom of it. Even if it’s just for peace of mind. Thank you!! 🙏🏻
The reason I bring it up is that I have dropped foot that the say either came from rads or a shot near my sciatic nerve. I have adapted to live with it, but nutty to be NED since summer of 2019, but I have this souvenier!
Exactly....written as I work out on my recumbent bike to loosen lower leg and foot. I have learned to say sports injury...easier! Try explaining a shot or rad hitting the sciatic nerve to people and what happened from there....without being a doctor!
Haha!! I hear you!! It’s amazing how uninformed we all are…until it happens to you!! In a way, this is a great way to advocate!! We are HUGE cheerleaders in AWARENESS!! Sometimes, it’s difficult, but in the end, due to our illness, we are a great resource to others…even when we explain what is ailing us. I refer to our disease as a “chronic illness”…people understand better…just like someone who has MS or diabetes. People get that we’re going through “something” …ahhhhh, the irony of it all!!
I am at an age when so many have so many ailments. And there are days when mine feel a lot less. a) I know what it is and b) there are drugs and research out there and c) I have a great team. I have to tell you....the number of people who I have guided through cancer at Sloan Kettering and kept them calm by little things like where to park, etc have been huge. And my own doctors have been AMAZING at helping me get friends situated with treatments. They are terrific. A couple of months ago a friend was found to have pancreatic cancer. I wrote for advice after midnight. By the 8AM, my TWO doctors had reached out and the head of two areas of pancreatic cancer --- surgery and oncology --- had written to me willing to see my friend THAT WEEK. Now keep in mind these doctors did surgery on me ten and twelve years ago.
And I have had doctors and a physiatrist and a PT try to explain dropped foot to me...and let's just say...the lack of science aptitude in my life continues. They are ardent. I pay attention. I nod. I do not freaking get it! LOL
And the same thing from my oncologist seeing a friend of mine next week....and I spent time talking my friend through options....just questions to ask and what to do. She feels empowered now with her early stage treatment instead of afraid. Ready to ask questions and evaluate. Crazy to say I pay cancer forward....
yep I have this. I found out 2 mo ago after the Xeloda stopped working, that it was from mets to hip. (Mine goes from hip to groin area also). I knew something was up when I started having light pain in the groin and my hip just didn’t feel right.
Fast forward a month or so and the pain became much worse, especially when lifting that leg to the side (or walking). It really scared me.
While I wait for the next treatment to be decided, I hopped online and found that there are ways to help strengthen the bones which I was actually looking for.
I started taking Diatomaceous earth (food grade) which is rich in silica, which most if not all people with illness are severely deficient in. Also boron, K2 and a few other supplements.
Within a week my hip pain has lessened by 50%. Clearly this wasn’t due to any medications or treatments, because I’m not currently on any. So i’d say maybe research these things in addition to whatever you’re doing. It might help!
Me, too, Maryanne! It’s more annoying than anything. I have so many little aches and pains, but this affects me in other ways. I’m afraid to drive and I need to be able to drive!! 😢
Hi CTGirl: I had MBC tumor to my left acetabular bone 4+ years ago. After SBRT radiation & (Ibrance, Faslodex, Xgeva ongoing), the tumor was gone within 7months. However, I learned, that the left pubic (interior & superior) ring bones were non-displaced fractures - common when there is a weakened acetabular bone. Over time the pubic ramus ring fractures became displaced fractures. Last March, I had debilitating pain in my left groin. I couldn’t walk & was hospitalized 5 days & had every scan available & orthopedic surgeon on the team, including an orthopedic oncologist review my case. Ultimately, a pain management doctor was called in & told me my Illiguanial nerve must be pinched based on my symptoms because I didn’t have a “bone” problem according to the orthopedic surgeons. The bone fractures are considered inoperable. Surgery to that area has a high mortality rate &, if successful, quality of life would most likely diminish & ongoing cancer treatment would have to be delayed until fully healed resulting in my controlled NEAD status to be at great risk. Clearly, I did not want to do that.
The pain management doctor said that even if there was a bone fragment touching that nerve, my body will wrap the bone in calcium (much like a spider wraps it’s prey in it’s web) so it will not impale a blood vessel or internal organs (my big fear) and the pain will diminish over time. How long? No one could say.
They recommended PT & pain killers. I’m not a fan of pain drugs so I opted for higher doses of Gabapentin 300 mg 3x/day (for nerve pain) and 1000mg of Tylenol (over the counter) 3x/day.
I went to an Interventional Radiologist who did a illiguanial nerve block but it didn’t work. I went to a neurosurgeon who looked at all my scans & he recommended the same course of PT & pain mgmt.
The PT has helped me tremendously. I can now walk without assistance & have reduced the Gabapentin dose by 200mg/day.
The groin, illiguanial nerve, pain is gone. I continue to do PT at home 3x/week to build left leg/side muscle strength along with overall strength building.
I pray you find a good reason & remedy to your pain.
WoW!! I had to read this 3 times!!! So complicated!!! I’m wondering if this is going on with me!! I’ve not had to use gabapentin before and may ask about it. I first, have to ask to see an orthopedic to rule out any fractures. I’m thinking the MRI should have shown SOMETHING. I’m perplexed.
I appreciate your help. I’m going to bring this up at my appointment in a couple of weeks!!
Hello-I have had quite a few complications with bone mets involving my hips and femur. It took about a year for me to find the oncologist orthopedic surgeon within my group but as soon as I did, she had answers and solutions to all my questions.
I believe you should find an oncologist orthopedic surgeon.
I've been having similar stuff eith my hip like a muscle weakness in the hip not able to lift the leg. I try and stay really active to oxygenate my body(cancer doesn't like oxygen)I read eith depleting the body completely of estrogen the TENDONS get very sore and weak. Its our tendons reacting to the lack of estrogen. I do acupuncture big time . And it helps with the muscle stuff. . I also try and really get hard core nutrition in. ZERO SUGAR. it has helped so much. I also drink chlorella. For some great nutrition. I'm on Ibrance a d Exemestan. Yes my hip is angry but I've found a few natural ways to chill it out. Good luck friend I feel your pain. Nichola
Thank you for the tips!! Unfortunately, I can’t stay away from ice cream, which has sugar!! LOL
It seems to be the only thing I can eat that doesn’t make my stomach angry!! My digestion is AWFUL!! Chemo and radiation screwed that up 13 years ago. I had a procedure to stretch my duodenum a few years ago and it helped, but it seems that I have to have it done again. I’m going to try the drink you suggested. I’m curious!! I do drink kombucha every day and that helps a great deal.
It’s a crazy ride we’re on!! Makes life interesting sometimes! The support we get on this site is amazing and ((unfortunately)) we are not alone in our journey. But, it helps to get perspective on things we experience.
Here I am, 3 months later and STILL no answers. I guess it’s just me!! Haha! I must be imagining all this!! I have more scans scheduled for November 9th. Maybe this time I’ll have answers.
I have hip groin pain, and have trouble lifting my legs (try to put on socks and underwear!). I have to lift my legs with my hands to get in the car.
It is anastrozole that is causing it.
Everything that I have looked into that might help the tendons, synovial fluid, also helps cancer cells. My docs say just to take Advil, but I try to avoid it. A palliative np prescribed a cream or ointment that is used in Europe and just got approved in US, has to be compounded, not covered by insurance, but not too expensive. And cannabis, topical, which I haven't asked for, and referral to a physiatrist. She warned me that I have to complain about range of motion (legs and arms) to qualify.
Ohhhhhhh….WoW!! That’s exactly what’s happening to me!!! Do you know what the compound is? I may ask to go on Fulvestrant instead of Anastrozole. I’m wondering if that would be better tolerated?
I’m only one year into this journey and still on my first line of treatment (Ibrance, Anastrozole, Xgeva). But I’d be willing to take the chance coming off of Anastrozole just to feel better!! 💗
I don't know the name of the compound! I haven't even used it. It says "apply two grams twice a day," but I don't know how much that is. It consists of gabapentin 3%, lidocaine 5%, prioxicam 2%, diclofenac .6%.
Then it says 'CCCN-GLPD."
This woman said that Israel is developing the most palliative meds, and Europe approves them faster than the US.
Everyone has been telling me to use Advil, but I am worried. All those old pain relievers are bad for stomach, or liver, or kidneys. A nurse I met said absolutely not to take Advil daily, but the low dose aspirin might be okay.
Also, I forgot to add that this palliative np said there is a cannabis ointment that is now legal (in NY, at least), without THC, that makes a good topical pain reliever.
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Neuropathy
Bone pain, trouble walking
Just a little panicked. I did't think I would be...
fulvestrant
