Symptoms of mets

leggo · May 2013

I find a lot of women need answers to this question and don't really have a place to post and ask, so I thought I'd start this thread where if any metsters wish to contribute as to how their mets presented and were diagnosed, they could add their experience and it could be used as future reference. Everyone's mets present differently, but it might be a good place to start if others relate their experience. If nothing else, it will get someone else to be more diligent in getting their symptoms checked out. A thread were someone can find answers to, "could this be mets?"

2006 - started coughing at work, couldn't stop, heard a snap in my ribcage. X-ray showed something, CT and bone scan confirmed mets to sternum and lymph nodes. This was after 6 months of being misdiagnosed with costochondritis.

2009 - was walking and for no reason I could identify, felt like I pulled a groin muscle. Got worse, not better. Bone scan confirmed mets to hip. Routine CT also confirmed mets to lung. No symptoms.

2009 - caught a cold and felt pain in my ribcage everytime I coughed or sneezed. Bone scan confirmed mets to spine.

2009 - knee was painful to bend and swollen. Bone scan confirmed mets to femur.

2009 - food started tasting strange and bland. CT confirmed liver mets.

2009 - had horrible muscle spasms in my back. Went to the ER prepared to hear that spinal mets were growing, but onc on call ordered a MRI of brain. (Thought that was really weird BTW, but I guess it's a symptom of brain mets). Brain mets confirmed that night.

Looking back, other than the mets in my sternum, none of the symptoms presented in the areas of the mets.

If this is all a little too scary to be in this forum, let me know, and I'll remove my post, but from my experience on another board, if I hadn't read the symptoms of the constant coughing being a sign of sternum mets, I would never have pushed for a bone scan and I'd still be going with the costochondritis diagnosis. Same with the brain mets. Thought for sure those spasms were related to my spine and was going to just suck it up and ignore it. Went to the ER just to get a muscle relaxant. Little did I know.

wintersocks · May 2013

Gracie1,

i think this thread a great idea, I am so uncertain as to what to look out for, that may indicate mets. This is partly because I have existing aches and pains which seem to move around. I understand about the '2 week rule', but feel as though I could be at the docs forever.

I would like somrthing a little more 'concrete' if that is possible. Perhaps that's asking too much? Perhaps most signs of mets are at least initially quite vague. I don't know.

leggo · May 2013

Just realized after I logged out, that there is a forum for this stuff. I've asked the mods to move it to the proper forum.

I understand the concern wintersocks. Hopefully, if more metsters contribute, something "concrete" will become a little more clear.

Lauriesh · May 2013

I had a sharp pain when taking a breath and was diagnosed with liver mets.

Laurie

fifthyear · May 2013

Gracie1, this is an excellent idea, and it will help many. I hope others will come and share. Thank you, for starting this thread.

dltnhm · May 2013

Gracie -

Thank you for beginning this thread. The one size fits all 'ask questions' thread, although extremely helpful, is just all over the place. And this one is in the perfect place. And no one has to feel they are intruding.

I know each person is different, but for you personally, did the symptoms - (pain, cough, swelling in different instances) always get worse or more persistent over time. Was there ever a time when you had a pain, it subsided for a while or lessened in severity, then picked up again?

Thanks again for beginning this and in advance for your response.

exbrnxgrl · May 2013

What no one wants to hear. No symptoms at all. Mets discovered by accident while getting PET for reasons unrelated to bc.

AmyQ · May 2013

Another no symptoms discovery after mammo, ultrasound and biopsy to confirm breast cancer. BMX discovered lymph involvement therefore onc ordered bone scan which revealed it all. However I did learn through the bone scan that the limp I had in January 2013 was due to a spontaneous fx of pelvis, due to mets but my bc wasn't diagnosed until February 7, 2013 so I was clueless and in a little pain. Fx has healed on it's own which of course is great news.

bevin · May 2013

This is very interesting. Thanks for sharing your story and starting this thread.

leggo · May 2013

dltnhm, the sternum mets gave me occasional pain, but didn't always hurt. The cough though, never went away. The "pulled groin muscle" feeling never went away but didn't get any worse either over the course of a month. My leg only ached occasionally but I wrote it off as joint pain and didn't do anything about it until my knee swelled up. Spinal mets only hurt when I coughed or sneezed or moved a certain way. Hope this clarifies.

wintersocks · May 2013

gracie1,

this is why this thread is a good idea. Who would have thought mets possible with no symptoms? That's a surprise to me. Meanwhile with all the aches/pains including sometime cough I have, it's really difficult to know where to begin exploring stuff with the medics.

Indeed I will have to think on it.

Thanks again.

curveball · May 2013

I'm another one with asymptomatic mets (liver) discovered by accident when looking at something else.

cheery · May 2013

I also had minimal symptoms when diagnosed with liver met. I only started having regular bouts of diarrhoea and felt terribly tired all the time.

With my liver met recurrence, it's a larger tumour and I have been feeling hip pain and the lethargy is back. There's also stomach bloating, overacidity and dizziness. The hip pain was what triggered concern initially but 1.5 years and many bone scans later, the bones are still clear thankfully.

ali68 · May 2013

Great idea having this thread, I will learn more on this than asking my doctors.

sueshane · May 2013

for about 4-5 months my left femur and knee seems to have no strength. It all started when I was painting the exterior of my house and thought that I had overdone it. But it feels like a ligament problem. When I tried to pull myself up into the back of my husbands truck bed yesterday, my left leg had no strength. I needed my step-sons help to get into the truck to help them move something out of the back of the truck. This is not the first time I was unable to use my left leg to climb, step-up or use it to apply my weight on it- it's like it freezes. Does this sound like bone mets to anyone reading this? Also, when I lay down at night, there is slight discomfort in the same leg.

I have always been able to physically do just about anything. Now I feel like I have no strength in my left leg. Any thoughts you have would be appreciated. I'm not limping that I have noticed...

leggo · May 2013

Sueshane, sorry I didn't see this earlier. This doesn't sound like bone mets to me, but if you're having trouble using your leg, something's going on. I'd certainly have someone look into it. Maybe something as simple as a pinched nerve, but I would certainly ask my doctor for an explanation. Good luck to you and maybe by now it's already resolved. Hope so.

Ibethewife · May 2013

Hello, ladies,

I am scared to death. Everyone says I am early stage and should not worry... but I know you all understand. In physical therapy about 6 weeks ago (unrelated to my BC) my back went out . I have had issues in past but not like this. It has been excruciating. Normally it would be better. I went to my chiropractor last week and had some relief for a day. I do go back tomorrow. I hurt all over as well from my AI. My husband says when ever I move at night I whimper or moan. All I know is I sleep poorly from the pain. I also hurt on a rib on the BC side and also near the sternum. I have lymphademia and some in the trunk area so the rational part of my brain says that's what it is but I've found myself fretting more and more. My 1 year mammogram was last month and it was fine although only side views due to the implants. My blood work on my last visit with the MO was off as well. My potassium was very low and I noticed my platelets were dropping considerably.( still in normal but barely) Am I over reacting? I don't see my MO for another 2weeks.

wishiwere · June 2013

Fantastic thread. The always lurking questions for those afraid to ask, b/c 1) we were early BC, 2) everyone says they're fine and 3)...that big ol ELEPHANT that keeps coming out of the front hall closet and waddling around, knocking into us....sometimes we just don't have the emotional strength to push his large bodice back into that tiny closet, b/c every time he makes his way out, he grows some . One wonders...do we build a larger closet door to get him back in to the closet, or do put a door on the hallway and not use that hallway anymore, b/c 'HE's' in there...or do we allow him free reign and thus, to take over our daily lives...keeping us on that very edge we try hardest to stay back from....

Thanks ladies for taking the time to assist us in our fears, whether by calming them, or affirming, both are sometimes needed depending....without you, we'd be lost in that sea of white coats, wandering around with a rather large pet attached

Ibethewife · June 2013

Met with the oncologist yesterday. He does not think my back and hip pain are related to the Aromasin. He is taking me off it for 3 weeks to appease me and my husband. The nurse said so that in our minds it is ruled out. When I see him in 3 weeks they will schedule a bone density scan, a bone scan, and a MRI of my lower back. My question for those with bone mets is how many of you were early stage when first diagnosed. My husband keeps saying over and over we found it early (stage 1b grade 1 and 0/6 nodes) but there is a part of me that is very scared and concerned..

Lauriesh · June 2013

I don't have bone mets, I have liver mets, but to answer your question, yes, those with early stage cancer, stage 1 and stage 2, even those who were node neg, develop bone, lung and liver mets.

While the pain you are having could be from mets, the odds are pretty good that the pain you are having is related to something else. Hope your scans are all clear.

Laurie

wenweb · June 2013

Here's a question. I have what seems to be a swollen painful (if poked) lymph node at the top of my hamstring (just under my butt cheek). I noticed it about 6 weeks ago. It's probably nothing, but once you have had a cancer DX, it's hard not to wonder if every ache and pain it a met. I'm seeing my BS next week for a 6 month follow-up, but figured I would ask the opinion(s) of you fine ladies.

bevin · June 2013

Hopefully someone will be along soon to chime in who had a similar experience.

Ibethewife · June 2013

Lauriesh,

Thanks for replying. Wednesday my pain got so bad ended up in the ER.had seen my MO on Monday and was taken off Aromasin to see if it would help. I was scheduled to go back in 3 weeks and have an MRI bone scan, and bone density scheduled. The ER doc thought possible fracture in my hip but X-ray showed more spine issue. After 2 shots morphine with no relief. Doc decided with cancer history to admit me so all the tests could be done at once. MRI and bone scan showed bulging disk spinal stenosis and some degenerative issues , but no cancer thankfully. Its awful to realize how every ache and pain our minds go to that C- word. Of course I may be facing more surgery, but the outcome will be very different. Thanks all of you for having that knowing and understanding ear.

alilou7497 · June 2013

I know what it is to worry about mets. Originally I thought that I was clear since the doctors kept telling me they were so aggressive with my treatment that all would be okay. Never listen to a doctor that says the works "its okay" I was diagnosed with Stage IIB Breast Cancer in July, 2011. the mass was 5cm and no lymphnodes were compromised. Went through the chemo, the lumpectomy and then a mastectomy. The Reconstruction didn't take so that was a miss. Then did radiation that killed me, burned me like crazy. My hair has grown back, back to my normal self and boom - - pain in my shoulder blade. My onc gives me a regiment of Advils doesn't work. My PCP takes and X-ray and says all is well. My onc sends me to a pain management doctor who claims I have bursistis and gives me a cortisone shot. By now it is five months after the pain began. When I go to the pain management doctor again he does a ultrasound and finds a cyct and requests an MRI. Because of insurance reasons it took almost a week to set this up. When it was finally done the diagnosis was Cystic Mass, no contrast, may be abscess or hematoma behind right side chest wall. Ok I felt a bit better but then the shoe drops.......multiple nodules in right lung probable metasis. CT scan required. So...... that was a Friday and I spent the entire weekend in tears, telling no one just wondering what now. I still don't know, waiting for the appointment to have my CT Scan. The funny thing is that the two people I did tell my sister and my brother just want to tell me its going to be fine its probably nothing and that so pisses me off sometimes because after what I've been through, what we have all been through, its probably nothing doesn't work. My Pastor told me yesterday at church, I am praying...it is what it is leave it in the hands of Jesus and that at least has brought me some peace until the appointment and results come in.

newfmama · June 2013

Hi alilou7497, I'm so sorry to hear you having to go thru this crap again. It's even more difficult when you can't tell anyone without hearing platitudes. I do hope you have been able to cope with the worry...I usually take a walk or bike ride & listen to loud rock n roll. That distracts my mind for awhile.

Let us know how your scan goes.

Hugs,

Deb

shoppygirl · June 2013

Alilou7497

So sorry about everything that you are going through. Try not to worry too much about the lung noules. I have heard they can come and go. I have one that was found during my original dx that the drs are very unconcerned about. They will just watch them for now and if they don't change too much it will be considered to be fine. Having Breast Cancer is so stressful! Take care!

Ibethewife · June 2013

Alilou7497

I am so sorry as well. The platitudes I hate the as well. I saw my PCP yesterday and had him go over all the scans and labs that eyes did while I was in the hospital last week. My bone scan read osteoblastic activity on my L5 most likely degenerative changes and less likely metasis. So I asked my PCP who I have seen since I was 6 ( I am 49 now) how do we know which is which, Degenerative or Mets. He stopped and thought for a minute and said I have to start depending on them ( the specialists) to know their specialty. I told him I trust him. What does he think. He said degenerative issues. I see my MO tomorrow to get his perspective. So we shall see. I feel somewhat better but there is still that fear. My husband and are a little nervous about tomorrow.

shoppygirl · June 2013

Waiting is the worst! Like we don't have enough to deal with!

Ibethewife · June 2013

Good news today. My MO confirmed what my PCP said we are dealing with arthritis not Mets. He was upset that the hospital did not assign me to him as I was on the cancer floor. So Monday back to the PCP for cortisone shots in both hips, and four more weeks off the Aromasin. The thing I hate most is bulging disks, arthritis, and spinal stenosis is "good news."

shoppygirl · June 2013

Thank goodness! So happy for you!

1210donna · June 2013

I finished chemo Dec 2011, in April 2012 I was diagnosed with Central Apnea, brain mets ruled out. Around July 2012 started having bradypnea (very slowed, difficult breathing) episodes which came on suddenly together with flushing (no sweat) and sleep attacks that were like narcolepsy. It subsided enough we didn't follow it up, besides I'd had a brain MRI. A few weeks ago had intense back pain around the area of my adrenals, started feeling nauseous, but I have POTS (autonomic dysfunction) with Vascular EDS (so very confusing), and also lumbar spinal stenosis, so figured it was part of that.

Then the same flushing and sleep attacks ramped up to the point I was falling asleep suddenly on my feet, as in I had been fine, then as if my brain was just going into sleep mode and taking my body with it. It came with cataplexy, so muscles giving way. So I've ended up sleeping 1-2 hrs in daytime on top of my sound 7-8hrs sleep at night.

Morning cortisol three months ago, before this all flared, was 518nmol (normal range 119-618noml). Morning cortisol a week ago was 710nmol, within the range for Cushing Syndrome/Hypercortisolism. This level is due to the pituitary gland signalling the adrenals to over produce cortisol.

Looked up causes, generally there's 5 possibilities... I can rule out fitting all but two, hoping a) its just temporary b) its just a benign newby tumor messing with the pituitary but not c) that its mets giving off hormones that are messing with the pituitary. I really don't think I have brain mets... no headache, no pressure in my head, no vision loss, no balance issues... so I 'feel' this is hormonal, that something is messing with my hormones in there. I'm already immune deficient, did my chemo on Neulasta, and hyper cortisone levels suppress immunity, just like steroids would, so I really hope its something else, something mundane.

Symptoms of mets

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