If you are not Stage IV but have questions, you may post here
Comments
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Karina, They can travel either or. Breast cancer is sneaky. Sometimes you get mets all over in places with no nodes and places with nodes.
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PLZ--Anyone ever experience a false positive report from a Spect CT?
I'm just searching for ANOTHER reason to stop worrying that my IIIa is about to change to a IV: I just finished a 3-year biphosphonate clinical trial, which required an end-of-study bone scan. I had no reason to believe it might come up hot. But after the scan was completed, they kept scanning my pelvis, over and over again...and then they asked the dreaded question--whether I wouldn't mind moving down the hall to the Spect/CT. There, they continued concentrating on my pelvis... with no explaination as to what was going on. (Although I did see "SUSPECT" stamped a few times all over my file sheet.)
The next morning, I got a call from the nurse telling me my oncologist had ordered a PET/CT (which I have to wait 3 more days for, plus another day to receive the report) The nurse wouldn't confirm or deny.
This is all taking place at a leading cancer institute (in Houston--you know the one)-- My oncologist is all scientist-but not much heart, so he's left me hanging--wondering what the heck is going on, and although I should know by now not to worry, it sure would be comforting to hear from someone who has actually experienced a false positive bone mets report from a Spect CT.
Are Spect/CT's amazing and wonderful, or do they have any specific limitations that anyone knows of? Come on, throw me a bone. But be honest--what do you radiology experts really think?
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Chrissy, you are an absolute gift from god. I have no questions right now, but I have been reading. The way you answer everyone, with such kindness and patience, you deserve a giant thanks from this site. I look for award to checking in periodically to learn.
@gillyone, I agree, I feel like I read and hear "thank god, no node involvement" from so many people and feel weirdly slighted. Then I say, "thank god my nodes did their job" without thinking of who could feel crappy from hearing that. I have worked on knowing everyone is coming from a place of cancer crazy town and never mean to "dig in". Once again, I find this site to be remarkable. Xo0 -
Thank you Josiecat for your compliment but really I am no different to dozens of other women on this site who are willing to take the time to try and inform and calm others who are worried or newly diagnosed. It's called paying it forward.
Love n hugs. Chrissy
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Hi ladies here's another question im going tomorrow for a full body bone scan and some other tests on Friday I've been having pain in my hip that is slowly getting worse now I have found that the gland in my neck same side as sore hip (left) is swollen and sore do you think that this is in relation to hip
Thank you
Jojo
I have been following this thread since its beginning and it's been soo helpful thank you for taking the time to help other women0 -
Hi Jojo Good luck with your scans! I hope that your hip is just arthritis and nothing more. As for the lymph node in your neck, it could be anything but I doubt that it has any connection to what's happening in your hip. I'm no doctor so this is just an opinion.
Love n hugs. Chrissy
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Thanks Chrissy scan all clear and no sign of arthritis or anything else I'm soooo happy now I really don't care about the pains and aches lol
Jojo0 -
Jojo that's great news!!! I'm so happy for you! ime to get on with you life and live it to the full.
Love n hugs. Chrissy
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U know Chrissy I've been struggling with that exact thing ,I'm holding back on moving forward and starting new things and letting the """""NO I CARNT ,CAUSE WHAT IF IT COMES BACK"""""""hold me back from living life ,so I'm going to have counseling with a life coach starting next week and I'm looking forward to opening new doors .
You know ,that your a treasure !!!
Jojo0 -
I had an MRI in Feburary for a back issue and my oncologist got the report last week. There's a mass in my neck. He ordered a CT scan of my neck and chest Friday but I don't see him for results until Thursday. I'm going a bit mad. The neck is not a normal location for mets is it?
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Lexie, that does sound weird. What seems weirder is that it took three months for the report to reach your onc. What is up with that?
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Helo everyone,
My mom is 72 and stage iv. She goes to Sloan, which is great, because I got her to change to Sloan after she was dxed stage iv. Her onc before that was really inattentive. Anyway, she has been stage iv for 15 months now and appears to be ending her second chemo of taxol (had a good run of 9 months). Markers are skyrocketing (liver and node mets) and we will scan beginning of June, but I am anticipating progression. I would love for her to have a chemosensitivity assay or to maybe get second opinions etc. but she is so resistant. "Let's just see if this works..." I would fly her to MDA or others and go with her etc. , but no. She is not interested in research, looking at options and the like. It bothers me that she trusts so much in the medical profession - the same profession that fed her hrt for 12 years! I question everything, she questions nothing. Sometimes I think it's her generation - the doc is ALWAYS right. I can hear some of you laughing now. Any suggestions? Thanks so much, Mary
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Mary, with stage IV and treatment a lot of times it is as your mom says, 'lets just see if this works'. It is indeed a trial and error thing. Sometimes a lot of time passes while on a particular treatment and other times barely any time passes before we have progression.
I am not your moms age but I can see where she would believe in her docs, as you say it was the way she was raised. It seems to me that being treated at Sloan was your first choice for treatment for her and now you want her to change again as her chemo has failed.
Please, start preparing yourself that this is the way it will be for her and constanly changing treatment centres is not going to make any difference. If she is happy where she is that is the best place for her.
I know that's not what you want to hear as you don't want to loose your mom but the reality is, it is going to happen. Just love her and support her in her decisions as far as her trestments go. By all means attend her appointments with her and ask as many questions of her docs as you wish but remember always that the final decision belongs to your mom.
Love n hugs. Chrissy
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Mary, I second Chrissy's suggestions. A good friend of my family had breast cancer, and she told her family that SHE would make the decisions, and that if any of them tried to persuade her to do something she did not want to do or feel right about doing for herself, she would resent them for the rest of her life. They backed off and supported her. I wish my own family had done the same, I wish I had said the same words with conviction rather than simply trying to appease everyone and go through treatment that was not right FOR ME. Just love your mom and support her.
JoJo, I wonder if you would want to start a thread on that "moving forward" issue - I have had the same problems - wanting to WANT to move forward, but being somewhat paralyzed, not wanting to start anything new, because gee, WHAT IF it moves into stage IV with my next visit? Geez, what a terrible attitude, and then I beat myself up feeling guilty over THAT! I have started yoga and have been attending mindfulness based group sessions for cancer survivors, and you know what REALLY helped so far? Reading a novel last week, getting completely into it (one of the characters developed cancer and died, but it was the way he lived his last few months that really struck a chord with me), and not doing anything that I didn't want to do for a few days. I am not there yet, but saw some glimmers of sunshine through the dark clouds, and have the hope that maybe I can get to one of those partly-cloudy to partly-sunny days in my life again (I never had a life without a few clouds anyway, but there WAS a time when it was mostly sunny to partly cloudy). I know I am at high risk of stage IV sooner rather than later because I dug my heels in and refused radiation (really only good for local control and I am at high risk for radiation damage) and could not tolerate hormonal therapy, so all I did was lumpectomy + chemo + few months tamoxifen, then with recurrence had BMX + ALND + few months of tamoxifen. Many positive nodes, which PET scan did NOT show before surgery - I went into surgery thinking no nodes positive so MX with SLN would be all I needed, came out with ALND and all the problems that go with that. Cannot tolerate the tamoxifen, not eligible for additional chemo because of damage from both taxanes and adriamycin. So the fear is always lurking, but I know that is no reason to LIVE in fear - there HAS to be some joy and peace somewhere! And sometimes it is hard to find that when I still have so much pain and fatigue from the medical treatments I have already endured, I don't trust the judgment of my medical team relative to my own personal life values, and I don't trust scans because they have been falsely negative on too many occasions (normal mammograms my whole life, including the one done just before BC diagnosis when I found a large lump).0 -
Linda, I had my ovaries out and take femara. I did this because I did not want the tamox. So far, so good.
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Linda, I don't know your age, but tamoxifen almost killed me. I didn't do either rads or chemo, and had positive nodes. I'm taking letrozole (generic femara) now. The femara has some difficulties, but I'm doing much MUCH better on it than on tamoxifen. If you're pre-menopausal, you may want to consider an ooph to widen the range of things you can take. If you're post-menopausal (as I am), then there are definitely other options that may be available to you.
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Gumby, may I ask what the tamox did to you? I took the other treatments in stride, although some are quite scary, but I drew the line at tamox, although my onc was pushing it hard.
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Some things I won't remember, as it was about 9 months ago I went off it and onto letrozole, and frankly I have no memory anymore... But, to begin with I had zero energy. All I ever wanted to do was sleep. I'd get home from work and go pretty much straight to bed. Then I started having difficulty breathing, I've always had asthma, but I've controlled it by diet for a long long time, and I couldn't anymore. Then I started getting terrible pain in my feet. Then portions of my feet around my toes would lose sensitivity. I could BARELY walk. Then I got blood clots. Had a DVT from my foot to my groin and multiple in my lungs. Then finally the oncologist said no more tamoxifen and put me on letrozole.... well, to be honest, I said I would not take tamoxifen anymore and she'd better find something else to give me...
But my mother took it for 10 years with NO side-effects, so ya just never know....
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Thanks, that sounds really bad. As you say, it varies a great deal from person to person. I am glad the letrozole is better for you.
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Chrissy, I just want to personally thank you for sharing how you deal emotionally with stage IV. Your patience, kindness, and being in touch with how you feel is simply remarkable. You have an incredible ability to calm others, or at least me. (I have an anxiety disorder.) Thank you.
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Chrissy, thank you so much for starting this thread. I have been gliding to some of the stage IV threads on occasion and am amazed and humbled at the strength and beauty I see there.
Here is my question; my aunt was diagnosed in Feb (soon after I was) with colon and kidney cancer. Had surgery for the colon but not for the kidneys; she is stage IV with mets to the lungs and liver. She is 80 but up till now, very active. She is now in a wheelchair due to back pain, and on O2 due to her lungs. My sister (3 years NED) and I are going up to visit this weekend. I start my chemo in June and my aunt is doing so poorly, we wanted to see her before I started tx and while she still has some energy.
All that being said, my questions are this: my cousin seems to be in denial about his mom (which I totally understand) and I'd like some ideas on how to navigate those talks and we have always been a touchy family (Italian, you know) and I am wondering if I should ask before hugging her?
My mom passed last year on Memorial Day and my aunt is mom's only living sibling, so this is hitting all of us really hard.
Anyway, thanks again for taking the time to help us with our questions and, ladies, you are so amazing.
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Vickie,
So sorry so much is going on at once in your family.
I have read to where it is better to wait until the 2nd round of treatment is better to tell them it is not curable. So, first ask their mom if it is proper to strike up the conversation. Some do tell at the beginning. My doctor had hopes of NED after my 1st round so I did not tell until I had active disease again.
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I was dxed during pregnancy and had chemo. My baby was born beautiful and healthy. Now I have the time, I want to make a baby calendar. But it gets old to have only one cute little baby... So, I'm looking for other women with kids who went through the same thing. And we can collect all pics and make one nice calendar.
If there is demand, I may even start selling this and I want all proceeds-costs to go to a metastatic breast cancer research charity. The reason is: well if there is a cure for stage IV, no babies need to go through this again to save their moms' lives.
Anyone with me? Please PM me and send me the highest quality baby pictures you can find.
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I have posted my concern as an active topic, but i would like some advice from more knowledgable people. My oncologist wants to do a bone scan because I have elevated calcium and alkaline phosphatase levels. I am asymptomatic. I am terrified to have scan. I think I would rather not know if I have bone mets until I am having symptoms. What is your opinion. Is knowing you have something worth knowing? I think I would rather not cross that bridge unless I have symptoms and must undergo further treatment. My understanding is that early detection of metasteses doesn't increase survival.
Elizabeth
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I'm sorry Elizabeth but it's not going to make it go away. Ofcourse you should have the bone scan. It is always scary when you have already had BC in the past. But again, it doesnt make it go away. You don't necessarily have to have symptoms but most likely you will. Sorry but your health comes first, take care of it.
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Elizabeth,
You are correct that it does not increase survival. However, It can prevent fractures if caught early to do radiation to the bone affected.
I decided not do do scans in December because I am palliative only. When I have problems breathing I let them know and they do a chest ct. I had a pleural effusion drained and it helped me feel better.
If I am feeling ok, then I don't do any scans. For me it is not worth knowing unless it can result in a comfort measure.
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So you are telling me the treatments I'm doing now wont increase my survival any more than if I didn't know about the crap and waited to treat it till there were symptoms?
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Not necessarily so, a small lesion on a bone (or several) is easier to radiate and stop from progressing than to wait until the lesion grows and causes a broken bone or nerve impingement/nerve damage which is more difficult to treat and get good results.
Floating down denial river is gentle and comforting to many of us, I spend a lot of time on that boat. Then I face the realities, get busy with understanding that knowledge can give me power and face the fears headon.
Currently had recent progression after 2+ years of NED. Scan showed cancer was moving up the right neck via the vascular system straight towards the head (that is where I keep my brain). We decided to jump on this with some big guns (which has been pure hell for the last 6 weeks, and I was ready to quit.).
Scanned again, and showed "complete metabolic response" to the current chemo. Ok, so I guess it will be worth it to finish the next four cycles of this crap to stay in NED's arms for a possible couple more years.
No symptoms, just a scan that showed the progression. Know your enemy, know where it is, know what it is doing. I would rathe have the 6 chemo sessions (which are truly difficult), than be fighting brain Metz, which is where this would have gone. All without symptoms.0 -
Elizabeth - I guess my take is, yes it may not increase survival, but do you really want to risk DECREASING survival?? Would you rather just let it take over and go places it might not have gone (liver, brain, lungs) had you had it treated when it was only in your bones?
It isn't going to go away, no matter what you do, but it's your choice to fight and live for as long as you can, or just keep your head buried in the sand.
And who's to say how much *your* survival time is...ignore the stats, they are pure crap.
Good luck with your decision.
Amy
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Elizabeth,
I am so wrong in what I said. Treatments will increase your survival time! I was thinking of my situation, which is totally different.
Please forgive me for giving you incorrect information.
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