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

tangandchris

The window for COBRA has closed and as far as I can tell Medicaid is not an option unless I have active cancer treatment going on. I have worked out a plan with my MO to get a discount on my scheduled visit in June. That covers blood work and office visit....about $200. They will allow me to pay it out, still alot of money. I think I am going to give this pain another week and then call if no improvement. I'm not really able to do much else and honestly if I dwell too long I wont be able to function. Not having insurance is not a good place.

Artista928

Trying not to get paranoid here, but in addition to my lower abdominal on and off discomfort most likely Tamoxifen being the culprit on my uterine fibroids, I have more often pain on my bone far right side, like top part of my hip? I'm doing a pelvic ultrasound on 5/1 and pcp will give results then for the on and off lower abdominal pain, but should I demand a bone scan? It's been going on for weeks and seems to be getting a bit worse. Worried bone met.

chrissyb

Hi Artista, the fibroids can cause pain and pain can be referred but if that hip pain is getting worse it's always better to get it checked out .........even if it's just to put your mind at ease.

Good luck with your ultra sound.

Love n hugs. Chrissy

Artista928

Thanks Chrissyb! Is bone scan the only way? Or would a pelvic u/s show the pelvic bone too and if there's met? Of course after quite a time last night, it feels fine now. Does it have to be pretty frequent pain? thanks!

kytylove

Hello warriors....I have a question for myself about my friend, who's cancer has come back, and I need to know how to best support her, as she has been asking for my support for holistic medicine, my opinion as I told her is that it has it's place for sure, but I don't think one should replace the other. But I also am not dealing with cancer for the second time (knock on wood)....She was diagnosed about a year after me, with identical cancer, one big exception being she found her lump later than I did, so it had spread. She had a recurrence in her bones not quite a year later, and now it is in her lungs and she had a few spots on her brain. She is going through chemo, and had a very invasive, and brutal surgery on her lungs, which helped, but she's getting fluid in them again. She is convinced it's sugar, and meat that caused this, so she is eating a very strict vegan diet.

My question is, is there anyone with a success story about holistic treatment? She is losing a lot of weight largely due to her diet, her doctor wants her to eat meat, but she will not budge on this point. She has had a lot of people criticize her for these choices and although I do believe she does believe in it, I also know it's the one thing she can control in an uncontrollable situation.

The chemo has seemed to help, her spots on her bones have cleared up and she said that her brain spots are getting better?

I am worried about my wonderful friend, and trying to help her husband with his questions and her very scared mother and small children. The one thing I have been able to be definitive about is that she and her husband need to decide what is best for her, this is not my decision, but I have been through treatment myself, but nothing compared to what she has been facing.

Thank you and hugs to you all!!

dlb823

Artista, the most common diagnostic imaging to look for possible bone mets is a PETScan. A bone scan is normally used to ascertain the level of activity when bone mets are known and being treated -- in other words, is the current drug regimen helping.

kytylove, I'm so sorry about your friend's re-dx. I happen to be extremely holistic minded, but barring a complete change of lifestyle with a miracle thrown in, I don't believe anything holistic will cure cancer. OTOH, I totally believe in all sorts of modalities from Eastern medicine to complement our tx. Your friend may want to find a highly qualified integrative oncologist who truly understands the limitations and trade-offs of both Western and Eastern medicine. Here's a link she may find helpful: https://integrativeonc.org/

As far as diet goes, forcing yourself to eat red meat if you are adverse to it for any reason makes no sense to me. If she's anemic, it's probably not due to iron deficiency, but to her tx. If she needs calories, there are plenty of healthy non-animal products, such as avocado and nut butters. I'm not a nutritionist, but my layman's opinion is that a mostly vegetarian diet is healthier than a meat-laden one for many people.

Glad to know her chemo is working! And yes, even spots on the brain can clear up. Deanna

chrissyb

Artista, a simple xray will show anomolies but then would need to be followed by a PET for definition with a bone scan after that.

Sometimes we are so worried over the possible return that we almost convince ourselves that it has happenned. Keep a check on the pain and just wait and see what your ultra sounds says before heading into high cost scans.

Good luck.

Love n hugs. Chrissy

Artista928

Thank you Chrissyb. Thank your for having this thread for us and helping us. You are a Godsend. love and hugs back to you! xxx

Jumpship

Hip pain....for me the x-ray showed nothing but the pain was super painful. Turned out it was my sciatic nerve. Some stretches and a great massage therapist and that is so much better. Still have back spasms. Freaked me out when I was holding the baby this weekend.

LeesaD

Concerned- I was dx with IDC on Feb 3 2017. Radiologist/ biopsy thought 6-8 mm. Had BMX on March 27th with senintal node biopsy. Path showed tumor 3 cm's and not less than 1 cm which was thought. Sentinal nodes showed micromets in 2 of 4 nodes. Met with MO and he ordered Onoctype. Voiced my concerns about axillary nodes and my surgeon agreed to go back in and do ALND on April 17. He took out 14 additional nodes and 2 of the 14 were fully positive! Even more so than the senintal nodes which were only micromets. So all surprises along the way. MO ordered chest and pelvic CT. Had chest CT this past Monday and am having pelvic CT this coming Friday. In the meantime, my MO calls me yesterday and says Oncotype is back (which was ordered before we had the additional nodes so I have 4 involved now) and my Oncotype score is just a 3 . Only good thing I've heard since this started. I'm still having chemo as this would only apply for 1-3 nodes he said but even with the micromets in 2 he's not chancing it and I'll have the chemo which I am fine with and the hormone treatment which he said will be what will probably work best. So he said witt the 3 recurrance score he was not too concerned about the CAT scans. So he calls me today with the chest CT results. He said lungs clear but there are some other things that came up that I have to have looked at. A node on my Thyroid ( I understand this could be common so not worried), an adrenal node mass that he wants me to have an MRI for (again could be common) and a mass in my right diaphragm that he said doesn't look like cancer but it could be scar tissue or something. He said he doesn't think any of these 3 things is related to my breast cancer at all. My tumor markers all within normal even low ranges- Cancer Antigen 27-29 is a 21 U/ml and my CEA is 0.5 mg/ml. Could the adrenal and diaphragm be a mestasis without it being anywhere else and my bloodwork being pristine and my Oncotype a 3 ?? I am freaking out that I could go to Stage 4 when I haven't even begun to fight this yet. I start chemo next week. I know noone has the answers but what do you think? I think I actually reached my lowest point today which I didn't think was possible after being so low finding out about the two positive nodes from second surgery. Any thoughts would be so appreaciated.

dlb823

Leesa, It's good that you're having both chest & pelvis CTs to hopefully ease your mind after the surprises in your pathology, which would throw anyone for a few days. But mets to adrenal gland or node or diaphragm would be extremely uncommon. And that's interesting that nodes from your ALND had more bc than sentinel node(s) did. It sounds like they were really doing their job and catching those traveling bc cells, probably preventing them from going any further. Also the fact that your CA27-29 and CEA are within normal range is excellent news. And the low point is also pretty normal -- kind of a letdown of emotions after being so strong from Feb. 3 until now. But I honestly am not reading anything especially concerning into what was seen on your chest CT, and it doesn't sound like your onc is either. Hugs, and hang in there. And let us know how the CT of the pelvis goes. Deanna

PS ~ I'm surprised they didn't do both CTs at the same time, since they're both very quick.

LeesaD

Thanks for your input Deanna. Yes the ALND results were shocking to my surgeon, oncologist and to me. They said extremely rare for sentinal to be just micromets and axillary to be fully positive. That's why every test result now is causing extreme anxiety. When the Oncotype came back I thought things were on the upswing. And yes I totally agree about the pelvic CAT scan should've been done st the same time. The tech said it would've taken like 2 extra minutes to do the pelvic. But that was some insurance company representative denying it saying it was unnecessary or just being difficult not realizing he just cost them more money as it was appealed and approved right away. After about the two hundred grand they've laid out already why deny one test.

gargengirl09

Wondering if anyone has had a biopsy of their skull for possible met? My MRI shows a lesion in the superior frontal bone. I've been having headaches and dizziness. My oncologist says its a difficult place to biopsy. I'm not even sure I want to think about what it's like, but curious if anyone has had one done, and how bad was it? This area could be a vessel island. Oncologist is sending me to a neurosurgeon. This area has been seen on MRI twice in the past year. Thanks in advance.

Goodie16

gargengirl09, I think a referral to both a neurosurgeon and neuro-oncologist are in order. With brain mets, or possible brain mets, it's best to have specialists on board. I've never had a biopsy for a skull met, as my only met was in my brain. Others with bone mets may be able to chime in on the possibility of a biopsy there.

Best wishes to you.

Hopepraylove2017

hi everyone. I'm posting here for my mom. She's almost 6 years NED from a stage 3 diagnosis back in 2011. Double mastectomy, chemo, & she's been stable on armidex since....

This last week her onc told her that her tumor markers were elevated 10 points. (Baseline is 10,11...number was at 21) so still normal but raised. Her WBC was also elevated to 10k. He scheduled a bone scan and PET for this coming Tuesday...please give me some insight on TMs! I'm trying to figure out if this can be anything but the cancer coming back...scared!

MJHJAN1014

Hopepraylove,

Tumor markers are so variable from person to person. Without a lot of results to see if there is a trend, it would be hard to know the significance of your Mom's numbers. The elevated WBC would be more indicative of infection, though 10 is not super high. The determining test will be the PET scan. Is she having pain anywhere? My MO looks at things in this order: 1) how do you feel? 2) PET scan results, and 3) tumor markers. I think her Doc is just being very cautious here. Try to proceed as normally as possible while you wait for the scan results. The period of "scanxiety" is the hardest part. I'm betting on a normal scan! Best, MJH

gargengirl09

Thanks, Goodie16!

Hopepraylove2017

thank you for your response. I very much appreciate all input.

She has normal joint pain from the armedix she's been on for the last 5 years. Every day something hurts-knees, hips,fingers, toes. I asked her if she was feeling anything different and she says no, just the normal joint pain she's been feeling. So who knows...scanixety is a total real thing!! Feeling all types of worried and scared. Her scan is on Tuesday so we'll be praying hard til then

stephilosphy00

Hi all, I am one month out from my last chemo and still have bone and muscle soreness all over which doesn't seem getting better or worse. This week I start having the same kind of dizziness I had when I was on AC chemo and also a sharp pain come and go at one spot of my head...I know they are probably all caused by chemo and the lupron I am one. But I am still very worried I have some kind of mets.

Thank you for reading my post!

MJHJAN1014

Stephilosph- I think in your shoes, I would: 1) give it more time, and 2) report your symptoms to your Onc. nurse or MO.

Lots of weird zaps and zings can occur around the chemo! Best, MJH

mara51506

I agree with the poster. If not reported, tell your onc. Try pain relievers for the headache. Extra fluids for the dizziness. If you notice vision issues, balance problems or sudden muscle weakness, call an ambulance. It is easy to panic long after treatment is over but good to keep onc apprised of your symptoms. I will say headaches are not typically a symptom of brain mets.

dlb823

steph, it can take several months for the SEs from chemo to slowly dissipate, and your body is going to continue to react to the loss of estrogen the lupron is causing. Other than a severe pain, or similar emergency, a good rule of thumb is to give any new symptom 3 weeks to resolve on its own. Most will within that time. If something is still an issue after 3 weeks, report it to your onc.

It's also very natural to worry about every little twinge following active tx for early stage bc. But try to remember that you had aches and pains prior to bc that had absolutely nothing to do with bc, and you will continue to have them.

Good luck, and keep us posted.

stephilosphy00

My CA 27.29 last week dropped from the highest 21 during chemo to now 15, so I really think all those are just SEs from chemo. Thank you ladies for all your replies!

PezGal

hi. Liver question here. During chemo (12/15-4/16) my ALP was pretty steady, high 40's low 50's. Frankly, I never paid attention to it. Saw my MO yesterday and she wanted to run a blood test to recheck it along with a GGT. She said it was a little high but she wasn't too concerned but likes to be proactive. I come home and check my e-record and see that since June of last yr this thing has a steadily been rising. Side note: I had rads in June when it started going up. It's 128 now. Not super high but the steady increase has me freaked out. This is a bad signs for mets isn't it? If it was one oddball high number that'd be something else. What do I hope for here hope here, fatty liver? So scared all over again, constantly. :,

cive

PezGal, Could be fatty liver, cirrhosis, the rads and/or any medication that you are taking.  Right off the top of my head I don't know if the #s you quoted are higher than the allowable.  If they are not, I wouldn't worry about it at all.

PezGal

Thanks for replying cive. Reassurance feel nice. I'm just worried about the upward trend. My bilirubin and triglycerides have been going up too. My husband tells me to not worry till there's a reason to worry. Good advice, but I think people that don't have cancer don't understand the mental side effects and how every bump, pain, and "upward trend is super stressful.

Edited to add: GGT came back normal. So I guess this is a BONE questions now.... Any bone mets folks have the ALP rise an an indication? Rise to what number?

Thanks,

lisa

tessu

I'm over 60 and have had degenerative changes in my lower back even before bc. During chemo I was much less active and the pain pretty much went away. But especially since ending Herceptin last Nov., I've been a lot more active, and theback pain has come back with a vengence. I have pain now in my lower back which feels like it's in the bone, much lower than what's from the bulging disks.

My questions: Do bone mets hurt constantly, or just at night? (this pain started just at night, waking me up, but has been constant now for the past three weeks) Also, do all bone mets show up on MRI? I had an MRI (through another, non-cancer doc who knows about my bc) two months ago that did not show mets (just worse disk stuff, nothing at all abnormal as low down as where the pain is). I dread contacting my oncologist yet again for something that is probably nothing to do with bc, even though he said call if something goes on for more than two months...

Thank you in advance for your advice.

chrissyb

Hi Tessu, so sorry you are feeling that pain. An MRI would definitely show bone mets so if nothing in that area showed up just two months ago, it is very unlikely that they would be there now and large enough to cause the pain you are feeling. It seems far more likely that you are having referred pain from your bulging disc.

Hoping this helps a little.

Love n hugs. Chrissy

dlb823

tessu, to answer your question, bone mets can hurt anytime, depending on where they are and if nerves are involved. For many of us, the pain is often very strong aching or burning, made worse by activity or overdoing. But any pain that awakens you at night needs to be investigated.

Where I may differ a bit with Chrissy on your MRI, is that if a radiologist reading your MRI is not trained to recognize bone mets and is not looking for them specifically, I think something small could possibly be missed. You said your MRI was done for an entirely different reason, and this is why I might ask your onc to have your MRI re-read by whomever he uses specifically where you are experiencing pain now -- just to be sure. Also the "gold standard" for diagnosing bone mets is a PET scan. So if your pain doesn't improve with things like heat and OTC meds, I would probably ask for a PET scan if only for peace of mind going forward.

Also two months is a significant window if you're in serious pain. In the US, the traditional rule of thumb is 3 weeks.

Good luck, and please keep us posted. Deanna

tessu

Thank you, Chrissy and Deanna. I'll give things another week (I have a physical therapy appointment next Tues for this) but if the pain doesn't settle, asking for another reading of the MRI would be an easy first step. I thought all radiologists knew how to look for bone mets! I know my MRI can be sent to the hospital radiologists via internet, because that's what was done with my mammogram and ultrasound when I found my lump (also my biopsy tissue was sent --- the private pathologist couldn't identify the tumor as breast tissue because all the cells were dividing and looked so weird -- luckily the hospital path had special chemical stains for breast tissue ID). I'm not sure whether PET scans are available at the local hospital where I've gotten treatment, but I can ask.

Thank you both again for your help. I wish I could wave a magic wand and make yours and everybody else's stupid cancer just vanish. I've been off/on so scared without any definite signs of spread, I cannot imagine what you stage 4 women are going through, and I feel a little ashamed making a big deal over "just pain" (((((hugs)))))