If you are not Stage IV but have questions, you may post here
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Finding myself here to be proactive and keep calm! I have had back pain, middle of back and lower back on and off for a couple of months, pain sometimes goes to buttocks and down leg, making my leg foot feel achy. I saw onc a couple of weeks after it started, she offered bone scan, we did chest xray to make sure nothing is in lungs..was clear. So all of a sudden my mind is running with the fear of bone mets, I will call on Monday to sched. bone scan, but was wondering if any of you had that kind of intermittent pain, symptoms with bone mets. I also wake up at times with my surgery side (lump rads) feeling like it feel asleep, I shake it out and I'm good to go. Maybe something pushing on a nerve? Read report and chest xray did say prominent spurring...checking that out w/primary today. Ugh, was actually starting to not think about reoccurance, mets...
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msjag, your back to leg pain could be sciatica. It is due to nerve pain from pressure and is common.
If you had lumpectomy, numbness in breast or underarm could be due to nerve damage or, most likely, fluid buildup.
Ask your onc about the possibility of sciatica. I'm not sure how they test for it.
Good luck. I hope you'll be fine.0 -
If the bone scan is fine, either a CT scan or MRI of your spine would be useful for sciatica, and also reassuring because they can see some types of mets that bonescans miss.
Sounds more like sciatica, with the radiation down your leg. Any bowel or bladder issues? Does position affect it? (like bending forward with straight legs as in touching toes?)
The vast majority of the time sciatica settles down with simple anti-inflammatories, exercises, sometimes Physio or chiropractor. Any of that worth trying meanwhile?0 -
chrissyb: thank you so much for clarifying. I really appreciate your response.
I wish everyone strength, peace and happiness.
Take care
Michele
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Hi all - I'm in need of your advice. I'm worried about skin mets. I don't have IBC. Sorry for the length....
I have three white marks on my skin one along mx scar and two other in general mx area. I noticed the first about 2 week after I finished my last cycle of chemo (navelbin & xeloda) and began rads that week also. The marks look like grains of rice - began as flat marks but have become raised and elongated. I also have spider veins (telangiectasia) surrounding one of the marks and running along the bottom of where my breast line used to be. The veins showed up about 3 months after mx, well before I began rads (I know these veins can form with rads). My sister died of BC and she had the exact same marks (just many, many more plus some brown ones) on her body and called them skin mets.
I am currently undergoing rads for the primary. I spoke to my onc (he's excellent) a week after I noticed the first mark - he found the one on my scar line and I found the third about a week ago. He offered a biopsy; (I was not eager as it is summer holiday here so the labs are slow and my onc was going on holidays) so he suggested to wait and see of they grow and to see him again first week August if they have (that's when he's back from holidays)... he seemed a little worried to be honest.
Meant to write.... one mark has changed shape, the other two have not (one of them only appeared about 10 days ago by the way - there seem to be other marks nearby too but they are too small to see properly). and the veins have been reacting to the rads (shrinking just a little but then back to as they were plus a little, little bit more each time - this cycle has happened about 3 times over the past 3 weeks of rads.
Sooo questions - Have any of you had skin mets that began like this? Could the rads be inhibiting the growth that my onc said to watch for? Should I see my onc in August?
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Hi Sian sorry you are having this concern. I'm sorry I can't help on the skin mets as I don't have them or know much about them but from what you are describing I would think it woukld be prudent to see your onc as soon as he gets back from summer hoidays and have them biopsied. That way the worry will be put to rest once and for all. Good luck.
Love n hugs. Chrissy
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Thanks everyone!! I am going to schedule a massage, chiro appt and talk to my onc about scan...of course just got a letter from insurance co...I now have to pay $75 dollars for all catscans, pet scans, miri's...lovely!!
Sian, I hope you get some answers from your onc, if you can't wait, call and get some peace of mind. Its the not knowing that has makes us crazy.
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Hi Chrissy, yep I will get a time to see my onc when he comes back next week.
I was thinking about how people say not knowing or waiting is the worst bit. Personally I think that is only true when the tests come back clear. In my experience when they come back positive I long for those days of ignorance at least then you could tell yourself that it is all imagination or over-reaction and you did not have readjust (yet again) to a yet another "new normal".
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This is kind of an experiential question for a situation I didn't know how to handle.
I was waiting in the Rads waiting room and there was one other lady, she was visibly upset and kept asking people who walked through if they had had brain radiation. I was the only one left but I haven't had brain radiation. She was very upset and I didn't know what to say or if I should get someone. She just kept talking about how she was scared and just wanted to die, it would be easier than treatment. I told her, honestly that I miss both of my granddads who had passed, even the one from when I was really young. The most recent GMPA passed from metastatic prostate cancer when I was in college. I treasure all my memories with him, and even though he was at peace and I got to spend some great time with him before he passed, I still miss him and wish he as here. She said she didn't want to be a burden, but I wasn't sure what to say. I told her that I wouldn't see my mom, if she was dealing with this as a burden. She had been through chemo at a lower stage a few years ago and the mets were new. I asked her if she had been on the forums, and told her the stage V section of BCO was a great resource. I wrote down the site for her. I got called back to my appt, before her. I think she had been called but was ignoring it because she was scared. I told my techs that there was a woman in the waiting room who was really scare, if they could do anything.
In the future, what do you say. I felt very inadequit, I didn't want to step on her toes... I didn't know if I should tell her things would be ok.... Sorry this is random, but it really bothers me that I didnt' know what to say in this situation. Please help.
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Minimacsmom...
Honestly, I think what you said was more reassuring than you imagine. I think when someone is that scared, they often just want to talk to someone and voice those fears. And referring her here was fast and good thinking too! The ladies on the brain mets forum are amazing and deal with their stresses with grace and yes, humor too! The lady you met would be reassured by them... we all need hope! I hope she takes your advice and joins us here.
Love and best wishes to you...
Rose.0 -
Minimacsmom...
Honestly, I think what you said was more reassuring than you imagine. I think when someone is that scared, they often just want to talk to someone and voice those fears. And referring her here was fast and good thinking too! The ladies on the brain mets forum are amazing and deal with their stresses with grace and yes, humor too! The lady you met would be reassured by them... we all need hope! I hope she takes your advice and joins us here.
Love and best wishes to you...
Rose.0 -
Hello all. I've never posted here before, but thought it would be the best place to air my concerns and get some input from those that have mets to the lungs. Hope you can give me some hope or something. A few weeks ago, I began having pain in my upper back on the right side with breathing. I've had the pain before, so figured it was just an "air pocket" or some kind of crick and that it would go away on its own. It stayed for about a week then radiated or spread to my chest on the right and it was very, very painful to breathe. I decided to go to the ER to get some relief. While I was there, they did a chest x-ray. The doctor wasn't convinced that nothing else was going on, so he also did a CT scan. The CT scan showed multiple bilateral opacities with some measuring up to 1.4 cm. It also showed hilar and mediastinal lymphadenopathy. The doctor said I have pleurisy and, based on the CT scan, I need to follow up with my oncologist. So I did, and had a PET scan this past Friday and a lung biopsy today. As they were prepping me to have the biopsy, the doctor kind of went over his conversation with my oncologist regarding the PET scan (I still haven't seen it), and told me that what showed up on the PET scan was many, many nodules, but they were tiny. There were 3-4 that were a little larger though and were rated 3-4 SUV (don't know what that really means). He told me that he questioned my oncologist about the reason for doing the biopsy because, based on those results, he normally wouldn't be concerned. My oncologist told him he understood that but, because of the triple negative status, he wants to stay on top of everything. Does anyone have any thoughts on this, and do any of you think I may actually be facing stage IV?
Thanks for your responses.
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Got my PET scan results: 2 suspicious areas, one in T4 vertebra, one in axillary node area (I don't think there are any nodes left there!!!!). MO wants to do MRI of my spine. I am OK with that, but then my question is, if THAT comes back positive, do we just ASSUME it is cancer, or does she send me for a bone biopsy???? Or would she just suggest more meds or other treatment???
Also I have been having lots of headaches which the MO didn't really talk to me about. Paranoid that maybe she should get MRI of brain, too, as long as I have to get the one, why not just go for broke??? Not even sure they could actually do this, but the thought just crossed my mind (what's left of it! LOL).
I am SOOOO sick of tests and more tests.... Had fully anticipated a clean PET scan, remain IIIC and get myself back to work next week, now find I am a bit overwhelmed again.
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Linda, I have a few bone mets. They were 99% sure that's what they were after all the scans, but did a bone biopsy to be absolute. Sorry I have no idea about the headaches. Crossing my fingers for it to be nothing.
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Linda - sorry you're having suspicious areas. I have bone mets and my tx was changed without a biopsy because my tumor markers had risen so we knew it was mets. Each onc has his/her own way of doing things.
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ssmith-I think it is great that your doc is on top of this and checking things out. Hopefully it will turn out to be an infection or something not related to cancer. I hope you get more answers here.
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Linda,
You need more information, which the MRI will provide. Did your onc do a blood work-up to check your tumor markers? They are a good tool for some, and don't budge - even with mets - for others.
Please let your Onc know about the headaches. They are most likely due to stress or allergies, but your doc should know everything that is gong on with you.
Let us know how you are doing, ok?
Jennifer
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Ssmith, so sorry that you are having these concerns. I don't have lung mets but I do have many B9 nodes within the lungs caused through lung infections in the past. I am told they are scar tissue. Hopefully what your pet is showing is just the same sort of thing. At least you can be assured your onc is on your side and is being very vigilant with your health.
Thinking of you and please let us know the result of your biopsy.
Linda, just because the PET showed something and your MO has ordered an MRI what is being looked at may be something else altogether. Sometimes results of Pets show a false positive even with so called bone mets so your MO is just being super cautious for your benefit in ordering the MRI. If that comes back positive, then he/she will surely discuss with you what needs to be done for treatment.
Hoping all is good.
Love n hugs to you both. Chrissy
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Thanks Stormy, Chrissy, and Jennifer. My MO has not done tumor markers ever. I am thinking I probably need to get a second opinion at some point - I have had a little lack of trust in my MO from the beginning, so dug my heels in and have not really followed her advice at times - mostly because I have had such SEs from everything she has given me that my QOL is not so great much of the time - now I know she is sort of gently trying to prepare me for the next steps .... and I don't want to go there .... and I don't want to deal with any more SEs .... and I don't want to deal with this miserable BC .... and I have a lot yet to do and don't want to lose a lot of time in a bad mood ... so I am going to watch funny videos today after cleaning my bathroom, which always makes me happy when it is sparkling clean!
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Thank you to everyone who replied. After 3 mri's, a pet scan and a bone scan, the doc finally decided it was severe inflammation from my arthritic neck that caused the fluid on the spine that showed up on the mri......which precipitated the pet scan which showed "stuff", which precipitated the bone scan. Whew, what a mouthful..........anyway.........that sound you hear as you read this is a big whopping sigh of relief. Now I just have to convince my heart doc I need to be on some kind of anti-inflammatory so this doesn't happen again. (He had told me to stop taking it in April.) My best wishes are with everyone who has the need to post on this board. Pat
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Mimi so glad to hear the good news! Hope you manage to convince your heart doc about the anti inflamatories.
Love n hugs. Chrissy0 -
Chrissy and bak94, thank you for your responses. Turns out it is lung mets, is inoperable, and without chemo, I would probably have 3-6 months to live! Wow! I may have bone mets as well. I will have a bone biopsy on Monday, along with the reinsertion of a port for chemo that will start next week. Carboplatin, Gemzar and Zometa. My onc says the side effects are nowhere near what I suffered with A/C and Taxol. I hope he's right. Guess I will be posting on a Stage IV thread now. Good luck to everyone here. Pat - congratulations on the good news. Linda - my onc never checked tumor markers either because of the high incidence of false positives and the anguish that causes. I'm hoping your onc just has your best interests in mind. Keep enjoying the funny videos! I think I will make more of an effort to enjoy more funny videos myself now.
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Steph I'm so sorry to hear this, I was hoping for a better outcome for you. I hate to say it but welcome to stage IV and the stage IV threads. There are some truly wonderful women here and I know they will offer you masses of love and support.
Hoping your chemo is gentle to you and hard on the cancer.
Love n hugs. Chrissy0 -
My 87 year old mother, 16 year survivor had mammogram, bone scan, chest x-ray yesterday. She barely got home and received call they scheduled her for scan of lungs Wednesday and appt with onc. Friday. I fear it may be breast cancer in lungs. I hope it is an infection or something simple.
My question is at her age is chemo and/or radiation her only options for treatment? Can they just give her an AI to slow things down? My dad had lung cancer (heavy life time smoker) and at 86 they gave him chemo and radiation telling him it may cure him or at least give him more time. Within a month he was in renal failure and passed.
I want to know what to ask. My mother is fine with a bad prognosis. She said she was blessed with 16 healthy years. She is at the age that if they tell her she should do something she won't question (you never question a doctor) other options. That's why I am going. Any suggestions?
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Steph,
A pox on lung mets! However, I'll bet they respond well to chemo. By inoperable, do they mean you have a bunch of teeny ones, or are they too close to a vital structure?
I'm from Dallas, so can I think of you battling Central Expressway in the heat?
Come, join us in the Stage 4 forum. Those ladies are wise and funny. I shudder to think of managing this disease without their knowledge and support. What did people do in the bad old days before the internet? Plus, now I can watch funny dog videos on Youtube whenever I need a boost.
Jennifer
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Hi, ChrissyB, Thank you so much for starting this thread!!!!! I do have a question for you all. I have never had a CA27.29 test, until moving to CA. My first 2 oncs, did not test me. My new onc in CA, is a very thorough young lady and wanted a base line. Well, CA 27.29 was 67, normal being,38 and my ALp was slightly elevated too. She is retesting me in a month. If they are still at this level, would you agree to do scans, or wait and still do another repeat of bloodwork. What is considered high and when do you think I should have the scans done. Thank you in advance for all your replies. Kathy
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FLtricia - at 86 years old, the best option may be symptom control only. If they feel obliged to offer her chemo, she does not have to accept it. Maybe you can discuss it with her ahead of time, so she can go into the appt telling the onc that she is OK with bad news, and doesn't want chemo. It is really good you can go with her.
The questions I would ask are - what is her life expectancy with treatment? What is it without treatment? What side effects and changes to quality of life will treatment cause? Is there a symptom control (palliative care) team she can see? What home care can be arranged?0 -
Thank you learnin. The talk with her beforehand about turning down treatment is a good idea. I've been "walking on eggshells" in conversations so far. I guess we have to have a real talk before Friday. She saw what my dad went through. Also asking life expectancy with and without treatment is a good idea. She knows what chemo is like, and she is much older now.
This is so hard. Don't want to upset her. Don't want her to suffer through treatment. Don't want to let her go. I pray it is not cancer and I am angsting about nothing.
Thanks again.
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FLtricia - At the treatment center where I received chemo, there were mostly senior citizens being treated, and I happen to know that one was in her 90's. Most of them seemed to be doing well with the treatment; some were very spry, while there were others in wheelchairs, for example. Those of us who were younger seemed to be the ones having all the complications.
I am sorry about what happened to your father; my father also passed away shortly after his one and only chemo treatment (long story). I don't know what the best option for your mother is, but sometimes it seems the outcome might have less to do with age and more to do with other factors, perhaps, like overall health.
I pray that it is not cancer, after all, and if it is, that the doctors can help her in the way that she decides is best for her.
{{Hugs}}
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Kindergarten for a lot of people the CA 27-29 and CA 15-3 (those tests show virtually the same thing) are not terribly accurate nor reliable that is why some doctors do not test them. Because yours are outside the normal range your doc wants to test again so she can see if for you they are going to prove a good indication tool.
As far as how high is too high before scans etc are done? Well again it will depend on the accuracy for you of the test and of course how quickly they are rising. There are a few factors that will influence these results including inflammation in your body so the follow up tests will either fall or rise consistently which will tell your doc if she needs to follow through with scans.
Hope this helps a little and your numbers are just because of inflammation.
Love n hugs. Chrissy
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