If you are not Stage IV but have questions, you may post here

Longtermsurvivor

Hi Momine,

While I don't have an answer to your prognosis question, I encourage you to go to www.smartpatients.com and join their kidney cancer group. The members are many, well informed and helpful to newcomers. I can't speak highly enough of the moderator Robin! She's pulled rabbits out of hats for me and many others.

blessings as you both deal with another cancer in your family, Stephanie

Momine

Longterm, thanks for the resource. Thanks for replying. I hope you are comfortable and well cared for.

TripleP

Question for those who have mets to bones. I took Herceptin until the end of January and gave been on Arimidex since last fall. I have had a terrible time with my hands, not being able to make a fist, trigger fingers, pain, stiffness since I started Arimidex. I am sure this is either due to the Herceptin and Arimidex. But in mid December a new pain started in my wrist and lower arm. The doctor thinks this is due to the Arimidex and I certainly hope it is. However, I was wondering if bone mets can start in a joint and what it feels like. This is a pretty sharp pain that is aggravated by movement

dlb823

Momine, I'm so sorry to hear about your DH's health challenge. To answer your question, unless pressed to do so -- which will be in each patient's own timing -- I don't think most oncs will venture a survival guesstimate, because that's really all it is. So much depends on how well we respond to meds, which varies significantly from patient to patient. Plus, our minds are so powerful that I think, again, unless pressed for some sort of time frame, most oncs would rather not plant the seed of 2 years or 5 years of whatever current stats might suggest, which are only as good as txs 2, 5, or 10, etc., years ago. I hope and pray your DH's upcoming scans show a great response to his tx.

Triple P, what you're describing sounds like arthritis or maybe even carpel tunnel syndrome. Mets can start in joint areas -- especially the hips -- but seldom, if ever, have I heard of it appearing in a wrist or finger joints, which are very typical sites for A/I induced arthritis. Have you had an MRI to figure out what's going on? If arthritis, I've found the supplement curcumin to be very helpful. If the problem is very severe, you might ask about switching to another A/I, or taking a short break, both of which can often help.

Jumpship

triple p

I too have worries about mets. I did want to throw in that acupuncture totally helped my trigger finger and clenched fist (from tamoxifen). Now if I could only figure out how to help other pains...

BrooksideVT

Quite possibly your tendons are not happy with the arimidex. I had not only joint issues, but tendon difficulties as well while on arimidex: Recalcitrant tendonitis in hamstring and Achilles tendon, and trigger thumb as well.. PT helped (actually, below the shoulder it is OT), but switching to a different anti-hormonal really, really helped. Do speak with your onc about possibly trying another AI.

MeToo14

Hi all, I have a question about possible Mets. A couple of months ago I had an on again, off again pain around my pelvic bone where it meets up with my leg. At first I thought nothing of it. But for the last couple of weeks it's been more persistent and the pain has spread to my leg. I say pain but it's a very dull ache but not really a pain. Has anyone else experienced this? I don't want to go to my doctor just yet because I don't want to be that person who freaks out over every little thing. I already had a scare in September and it turned out to be nothing and I had to have a chest ct.

dlb823

Hi, MeToo ~ The rule of thumb is if an unexplained pain lingers for 3 weeks, it's a good idea to have it checked out, and I've learned from experience that most odd pains do seem to ease up in that time frame. So if your pain isn't better in another week or so, I don't think it's unreasonable to see if your onc thinks a CT or MRI might be prudent. There are so many things it could be, but on the slim chance it's something going on in the pelvic bone, such as a hairline fracture, continuing to walk and put weight on it isn't going to help it and will probably worsen it. And that sort of fracture could be due to all sorts of things related (or not) to your tx hx, even the A/I you're on. If your pain isn't better in another week, I'd get it checked out. And if you do, please come back and let us know what you find out. Hopefully, it's nothing serious. Deanna

Ridley

Me too - I had/have a similar pain/ache. Ended up having an x-ray which came back clear. I do have some back disc issues, so pcp thinks it could be referred pain. X-ray found some calcified bone thing on my other pelvic bone (that side doesn't hurt:)), so back I go for a couple of additional X-rays.

My advice - get it checked out if it's bothering you - don't worry about what anyone thinks. Hope it's nothing

Kiks1

Ladies I need your opinions. I was dx with stage 2 bc at the end of November 2015. I had a pet/ct scan on December 7, 2015 because a suspicious internal mammary node showed up on breast mri. Anyways, pet/ct came back clean and I went on to have bmx and started chemo in early February. In early January, after my drains were removed, I started back up on walking etc. I had since noticed that my left hip has a nagging pain. It is not bad, I do not have to take pain killers but it has not gone away either. It does wane and ebb with chemo treatments. I had asked my MO about it but she reassures me that it is probably something else but not mets because my pet/ct scan was clean in early December. Somehow, I still can't lay the matter to rest and I am worried about it all the time. What are your thoughts? Everyone keeps telling me that I am paranoid because the pet/ct would have picked up the mets if they were starting to cause pain.

Thank you.

dlb823

Kiks, are you on Tamoxifen or an A/I? If so, that's most often the culprit with joint pain, including in a hip. If that doesn't explain it and it continues to linger, I would ask first for your very recent PET to be looked at again, specifically in that area. It's highly unlikely they missed anything, but it would give you reassurance to know it's been re-scrutinized with that pain in mind. If that doesn't give you enough reassurance, your next step might be to consult with an ortho doc who will no doubt do an MRI to see if anything is injured. Those are my thoughts on it.

If the pain is due to Tamox or an A/I, sometimes taking a short break and/or switching meds brings relief. I personally take curcumin, which helps me a lot with joint pain I would have if I didn't.

Good luck, and please keep us posted! Deanna

Kiks1

Dlb, I have not started on Tamox or Als yet. Just finished my 2nd chemo infusion. My hip pain started in early January before I started chemo. My concern is whether the pet/ct would still be valid since it was taken in early December? Could mets have shown up since?

ShetlandPony

Or has chemo put you into menopause, Kiks1? That could be related to joint pain.

---

dlb823

Kiks, December until now seems way too soon to have something new pop up. Sorry, I didn't realize you're still doing chemo. I suppose your hip pain could be related to that, too. Chemo can do all sorts of weird things to our muscles and tendons, but thankfully, they're usually just temporary. Other than asking them to take a second look at that specific area on your PetScan, I would probably try not to worry about it until you are finished with chemo. Then, if it's still bothering you, proceed with an ortho appointment. And kudos to you for getting out there and walking during chemo!

Kiks1

Dlb, thank you, I really appreciate your input. I have been very fortunate to have very little SEs with chemo ( thanks to all the advice I have received from members of this board, which has helped me prepare and prevent any SEs and the prayers of my family, friends on and off this forum).

BLS

I've found a hard kidney bean size lump on my lower right rib on my back. I'm going to the MO on Friday, meanwhile I'm ready to have a stroke, b/c I'm worried I have METS. Can this be anything else? I had my last surgery in Oct. 2015, when they took out my expanders and put in my silicone implants. Any thoughts?

Thanks,

BLS

chrissyb

Hi BLS, I can hear the panic in your words but do try not to think the worst just yet. It is very possible that is nothing more than a fatty cyst or lymphoma neither of which is life threatening. You are doing exactly the right thing by getting it check out as that is the only way to be sure.

Keeping everything crossed that it's nothing worrisome.

Love n hugs. Chrissy

BLS

Thanks Chrissy. I'm crying as I read this. Trying to pull myself together to get to work. I'm horrified hoping it's not Mets. I have had a lipoma before that was a scare, but it was moveable and this one isn't. Friday seems like forever and then I suspect they will order tests making me wait another week before I can have them. Wishing I could just run in now. Feeling horrified. Do you know anything about mets to ribs?

Thanks

DivineMrsM

Bls, I am sorry for what you are experiencing. Your reaction is understandable. If there is anything you can do to take your mind off things until Friday, do it. Whether it's immerse yourself in a binge worthy Netflix series, retail therapy or taking some long walks listening to some good uplifting music, seek those activities out. And take some deep breaths.

Please ask your doctor for an anti anxiety medicine too. Or if you have a prescription, take it. You don't have to be emotionally and mentally strong all on your own when there are medicines to help you cope. No one gets any medal for toughing it out all on their own. Best wishes to you and prayers, too. Hang in there

chrissyb

BLS, yes it is a horrifying thought and one that is so scary it makes one break out in a cold sweat. I have mets to the bone but my mets we the type to break down the bone not build it up. If what you have found is a bone met, there would be a certain amount of pain associated with it as it would be most unusual to not have any at all.

I have found that trying to second guess anything that is not the norm really is futile as it only creates stress and manages to cause upset.

Just a question, was your recon a latisimus dorsi or a diep? If it was the former what you are feeling could well be nothing more than scar tissue. Please try not to stress yourself to the max just yet, it could all be wasted effort when you find out exactly what it is.

Love n hugs. Chrissy

tangandchris

So I have discovered that I have a lump/bump on my spine, higher than my bra line but below my shoulder blades. I only discovered it because I was scratching my back against the corner of a wall and felt intense pain. The lump is hard and does not move, I've asked dh if it looks as if you could squeeze it and he says no. I have noticed pain on and off in that area prior to feeling this lump, but who knows if it is related.

So, my question is....would a met present like this? An actual lump on my spine?? To me it seems far fetched, but I really don't know. I'm trying to keep myself from going "there", but of course a lump is a cause for concern when you are dealing with someone who has had cancer.

Just look for thoughts on this, thanks!

tangandchris

Here's a pic, it looks almost like a bug bite.

dlb823

tangandchris, can you email that photo to your onc? You're absolutely correct that mets don't usually appear as visible bumps, and chances are it's something entirely unrelated to your bc. But because it did cause the intense pain you described when you bumped it, I don't think it's at all unreasonable to show it to your onc and see if he suggests some type of imaging, if only to ease your mind. Something like a benign bone cyst, for example, might feel hard and unmovable. But it should still be checked out. The other thing that comes to mind is something like a vertebrae or disk out of place.

Please let us know what your onc advises! Deanna

tangandchris

thanks deanna, I think I will call and see what they say. I was just there in early February!

Nina27

Hello Ladies,

Hope you are all feeling well today.

I have just been diagnosed with IBC grade 3 tumor. I knew I had the lump and heat and redness for months before I got it check out by the doctor (I had breast implants in April last year and assumed it was a complication from that, never did I once think it was cancer)

Anyway, my lymph glands are swollen and I sometimes get pain in certain bones and now it seems my head is heavy and the back of my neck is sore. I am going for a PET scan on Friday and hopefully starting treatment next week (neajuvant chemo) and I am petrified that I will be stage 4 because I waited so long to be treated.

How long after you ladies felt a lump did you get seen or treated? Does it have anything to do with grade of tumors? I am er - pr- and Her2 +

Can stage 4 be beaten as in the fact you can recover and hair can grow back and lead a normal life?

Thank you all so much for sharing your tips and experiences with me. It's greatly appreciated.

Nina

xx

chrissyb

Hi Nina, right now your mind will be running like a run away train while the fear factor is running at 100%. Take a deep breath lovely and do try not to worry until you need to........I know that is easier said than done but do try. It's very possible that the pains you are feeling in your neck are from the tension you are feeling.

I'm stage IV and have been for seven years. I have all my hair a few extra pounds and a life filled with love and laughter. I travel, cook, do crafts and spend time with family and friends. To me my life is perfect even thought I know that at some point in time things will change but until that time I just take everyday as it comes.

Right now you are just beginning this journey but it's never too early to start taking life just one say at a time. Good luck with your scans and your treatment.

Love n hugs. Chrissy

tangandchris

I heard back from MO'S nurse and she advised to see PCP. MO is out for 2 weeks and then heavily booked thru April. So I'm going to PCP Monday, I had to go for something unrelated anyway.

murielwhite5

Hi Everyone, I am wondering if ladies would be kind enough to share some of their symptoms which took them to stage 4? Throughout the boards there are posts regarding 'obscure' symptoms and of course some people who progress with no symptoms at all. For those of us who have lots of symptoms and SEs it would be useful to understand these 'obscure' symptoms. Thank you so much , Best wishes Muriel White

Anonymous

One thing that's tricky is referred pain. For example, pain the hip can be caused by a spine tumor pressing on a nerve. If only the hip is scannedthe spine tumor will be missed. Pain in the shoulder can be caused by a swollen liver. One might automatically suspect bone mets and order a bone scan that won't show the liver. This causes frustration from a patient that knows something is wrong but the scans are clear.

My obscure mets symptom was arm tingling that crawled up the arm caused by a brain tumor. I thought it was lymphedema or radiation damage at first. I couldn't accurately describe the sensation for awhile because it was so strange and unlike anything I'd ever heard of.

dlb823

Muriel, I think you'll find a wide range of experiences, so that creating a list of obscure symptoms with input from many women could make you unnecessarily crazy with worry about every little pain or twinge. But that said, I can tell you in retrospect the one I feel I missed and have heard of others missing was severe, aching lower back pain. I personally chalked mine off to changing from wearing flip flops all summer to wearing boots with heels, plus hauling around some very heavy flooring samples, as we were in the process of remodelling our home. That was in October, but it improved when I stopped doing those things, so never occurred to me that it could be mets and I never followed up on it. Fast forward to December, and I came down with one of the worst cases of something diagnosed multiple times at an Urgent Care as bronchitis, pleurisy and/or costochontritus (due to excruciating rib pain when I coughed), that I just could not shake. I finally made an appointment w/my local onc because I had never been that sick, and he even initially told me he doubted very much it was anything more than severe bronchitis. But my lab work showed a concerning spike in my CA27-29, as well as high liver counts, and that led to a CT scan that showed extensive bone mets.

I also totally agree w/Bad at User Names about referred pain. Around the time I was dx'd w/mets, I started having a horrible pain shooting up my right shin that got progressively worse until I needed a cane to walk. My local onc had simply shaken his head, like it was par for the course with mets. My UCLA onc at least questioned if it might be from a disk and ordered an MRI. But, long story short, just before the MRI was scheduled, I ended up in the ER with pathological fractures in my femur and pelvis -- neither of which had been where my pain was.

I think all you can do is pay attention to any new pain that can't be explained, especially if it doesn't go away in 3 weeks time. There is also a very new test for circulating tumor cells, which might help to put your mind at ease, if it's something you can get yet in Australia. Also be aware that the generally quoted recurrence rate of 30% is for all stages and types of bc, with a Stage 1A ER+ PR+ Her2- bc probably being more like 5 of 10% vs. a more aggressive and/or higher stage bc.

Hope this helps! Deanna