If you are not Stage IV but have questions, you may post here
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so my own peeves...saying "we all die sometime or could get hit by a car etc." Its not the same.
People bringing food without asking first.
I personally dont like flowers...i have to deal with them when they die.
For stage 4, no books on cancer or dying or whatever...get a gift card instead.
Mostly just dont disappear...many friends do because its,all so scary. Deal with your own hangups in therapy so you are freer to support her. Listen, hug and try for practcality and consistency. Give yhe caregivers support and help too!
Chris
PS its a nice letter, but I find it even more important to hear this in person or with a phone call. Then youll have a chance to listen. Its a courageous thing to get the feedback right away...and it is urgent after all.
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Hi Alicki, I'm so sorry that you are experiencing such problems. Brain mets can present with no symptoms at all or many depending on where they are situated. Fear of brain mets tend to make everything seem so unreal but if you have had two MRI's done in a four month period and nothing shows up, I would tend to try to relax somewhat.
None of us here are doctors so we can't dx you, all we can do is offer a supportive hand and share what knowledge we have. It is up to you to follow the path of pushing to find out what is at the bottom of all your symptoms.
Love n hugs. Chrissy
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Hi Welander/Chris.........I'm hearing your anger and frustration but cannot find where it is coming from other than loneliness and fear.........how can I help you?
Love n hugs. Chrissy
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hello,
Thank you for the generosity of your reply. I feel a bit lame to post because you are all dealing with so much more.
All that showed up was white matter changes which have been stable for 4 months and no enhancement on either scans.
That's why I was asking about enhancement
Thanks a million for your reply
Alicki
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no, has nothing to do with cancer
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Ladies, I happened to be reading the past few pages of this thread and hope you don't mind my mentioning something regarding dizziness. This may or may not help, but I wanted to throw it out there. A year or two ago, for the first time in my life, I had dizziness upon standing several times within about a week. Of course I was scared. I think I googled 'dizziness' or maybe remedies for dizziness and came across a number of links to something called the "Epley Manuever". Cut to the chase: I tried this for a few days and it worked for me.
There are all kinds of youtube videos showing how to do this at home, it's painless and simple. I guess the idea behind it is that there are some kind of crystals in the inner ear that get out of whack causing the dizziness, and this easy exercise allows them to get back into place. Here is just one link to many youtube videos on this technique, and you can do your own google search to read up more about it: https://www.youtube.com/watch?v=YK2Zj_TrBhE
Last winter, I worked with a guy who was having all kinds of trouble with sinuses and vertigo and wasn't himself. He had tests and took anitbiotics and then one day he came to work and told me about an exercise the doctor did moving his head from side to side, ect. It sounded like this epley manuever. And it must have worked for the vertigo, because he never mentioned having that problem again.
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I have been having upper right back pain acompanied with a feeling like something is stuck in my throat or chest...like I swallowed food or a pill and it's lodged. Is this something to worry about? I am concerned about mets ...if you have experienced something like this and were diagnosed with mets I would like to hear your input.
Thanks!
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Hi Chasingzoe, one quick question for you, did you have rads? Why I ask is oft times rads can burn the esophagus ( the tube that goes from your throat to your stomach) and scar tissue can feel like you have something stuck in your throat but just to make sure it is nothing to worry about, a check up with your GP wouldn't go astray. He/she is sure to guide you in the right direction or really put your mind at ease.
Good luck!
Love n hugs. Chrissy
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Chrissyb...I did have radiation, but only on my left shoulder and armpit as well as the left portion of my left breast. It has been 3 years since my rads.
Thanks for your response
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I am having concerns and questions about Donna dbla. I am confused. Is this the woman who went from stage 2 to stage 4 fairly recently? Lovely oval face, straight shoulder length blond hair parted in centre, wearing a sort of greyish tank and looking calm, poised and elegant? Wrote calmly and knowledgeably? I often read her posts - we were (I still am) stg 2 and I believe her dx was similar to mine, so I was taken aback when she entered the stage 4 forums. - I often looked & looked at her beautiful face........please correct me if I'm wrong? thanks chrissyb
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Hi Flannelette, yes, you are correct, Deanna dlba has indeed joined the stage IV ranks. If you want to read her posts, she is on the Bone mets thread.
How are you doing? I hope all is well with you.
Love n hugs. Chrissy
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Just to clarify to avoid further confusion.... if you meant me, Flannelette... dbla (Donna) and I have similar screen i.d.'s. Deanna (I also recently changed my pix from the one I'd used since 2008.)
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Hi I have a question and could use some direction please. Rheumatologist or oncologist? I had X-rays done in August for pain in my neck and back. Pain was intermittent at that time. Now it's constant and pain running down arms and lower back starting in. X-rays said degenerative arthritis. I of course like that answer... but should I see my onc earlier than January and tell him about this? Or am I being stupid? Been going on since the summer. Orig DX 2008 finished chemo 2009. Stage II IDCgrade2 1 lymph node, extra capsular extension w/ lympho vascular invasion. Thanks for listening and any input! not on any AI's..
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Ellzig, I would start by calling your onc and telling him what's been going on. Let him determine if he wants to see you sooner. January isn't too long to wait, but it sounds like some additional imaging is in order, especially since your pain has noticeably increased since August. Unfortunately, x-rays may not show everything that's going on, which is not meant to alarm you, but certainly seems to merit looking further, especially given your earlier diagnosis, which is a lot like mine with the extracapsular extension. Besides, you clearly do not have peace of mind about what you've been told, and that's worth a scan just to be on the safe side; and at the very least, you may need some pain meds to see you thru the holidays.
Hoping all is clear and what you have is a pinched nerve or something like that. But absolutely best to get it checked out a bit more, depending on when your onc suggests.
Keep us posted! (((Hugs))) Deanna
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thank you so much for responding Deanna. I'm not the alarmist type. For example no scans whatsoever since initial diagnosis (except mammos). I'm going to follow your advice on this one! If it turns out arthritis good! If not, I'll deal with it when I have too. xo will keep you posted. You ladies ROCK
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Hi and thank you Deanna and Chrissy. I'm doing fine, so far as I know. Deanna you were dx and treated at almost the same time as me. Only difference being by some - quirk? lazy tumor though 9 out of 9 on the bad behaviour scale - richardson? I had no nodes positive. that's all the difference. Apple was dx same time, stage 4 from the start.
I mostly hang out on the atheist thread, if at all, and less and less, but I've always felt that commonality of time between us. I'm not engaged in worrying but do know the reality of little buggers hiding away till they break out 6, 8, 10 years later. I had a HUGE aggressive tumour, I asked my surgeon often - why not the nodes? and he just used to say "cause some are not the travellin' kind." It is indeed a crap-shoot. I never consider myself a "survivor" or "ned" or even out of the woods.I just feel I had some weird luck of the draw. So far. Best wishes to both of you - I've read your posts often over the years.
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I just received the news that my circulating tumor cells number is 2. It has always been 0, even when I was originally diagnosed with breast cancer in 2011 and still had the tumors in me. My Oncologist is concerned that the cancer may be back and I need to go get scanned. Has anyone had their numbers increase and NOT had cancer? What do people think about the number being 2 for my circulating tumor cells?
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This rib series was neg also. RO said wait a couple of months and if nothing is better either he or my MO wud prescribe scans. I did the Ibuprofen for 2 days and started getting stomach pains so quit. It helped the ribs, but I'm back to square 1 again now. Decided to ask my MO to do scans now, had this long enough, waiting never does anything. If it's nothing it will be nothing now and I'll feel better , if its something we won't waste anymore time! Jean
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Bonnets, you could try taking the ibuprofen with food, or alternately take a H2 blocker (omeprazole). Or both. That might help with the stomach pains.
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Hi kbarry, I don't know much about the CTC test but I do know it is usually only recommended by the FDA for those who have already been dx with mets. Having your numbers raised by 2 points is not a huge amount but it would be enough to start a search to make sure that your BC has not returned by your onc, particularly if those numbers were 0 when you were first dx.
Keeping my fingers crossed that nothing shows up on further investigation.
Love n hugs. Chrissy
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Bonnets, ibuprofen should always be taken with food and never on an empty stomach. If it was working for you before the stomach pain began, do try again but with food.
Here's hoping that you get some relief from that pain soon.
Love n hugs. Chrissy
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kbarry, I've had a CTC test done (FDA-approved one) and the result was 0. I think 2 is still low in the scheme of this test, but it's good your doctor is being proactive. A circulating tumor cell is not necessarily going to cause metastasis so it may or may not be something to worry about. Also the results are from 7.5 ml of blood, so even a 0 does not tell the complete story from the roughly 5 liters of blood in our system.
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Hello, I have a question about lung mets. After I finished chemo (still doing Herceptin), at the simulation for my radiation, they detected several small nodules of different sizes on both of my lungs. The pictures were compared to a chest ct I had in August and the Dr said they were not there in August. They are all small, between 2-6 mm . The Dr who read the ct sent my RO and MO a letter saying he could not rule out metastatic disease and recommended a follow up ct in three months. Of course, now I am freaking out. My Ro is going to book me in for a CT in January rather than wait three months...probably because she knows I am freaking out. Anyway.. has anyone else had similar happen? I read that most lung nodules are not cancer, so that reassured me somewhat..lol. I am going for a Lumbar and a pelvic MRI tomorrow also as I have been having hip and pelvic pain which mostly isn't very bad, just a dull ache like a period pain, but sometimes its a sharp pain and sometimes my left leg feels strangely numb and the skin hurts. So I just want to know, I guess, if anyone has gone to stage 4 during treatment and if anyone had lung nodules develop during treatment.. Thank you for any advice..
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Hi, jdmac, what you read about nodules is true, and I guess they can come and go, too. When i found out i had some lung nodules before treatment, and then learned months after treatment, that they had dissapeared, then i was left wondering was it cancer or not??? So i do understand how you could be freaked out, believe me! But, the medicine you took is extremely powerful, and it is probably nothing... especially if they are doing the wait and scan thing, it means the docs have your back, but are not overly alarmed, and so you should't be either! but we do worry, don't we? I was a freaked out spaz every other day at least, but the longer i have been reading on bco, the more relaxed i am getting. wishing the best for you, anyway
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Hi everyone,
I have a question about ribs as well. I've had a slight pain on my ribs (right under my breast - tissue expander) for over a month now. It was worse a month ago, got better, almost went away completely when I had an oophorectomy and now it seems to have come back but very dull. It is tender to the touch and hurts like a bruise. I think it might be from my tissue expander but I have had them over a year and haven't filled them in over 6 months, so why now? It is also on the side where I had my tumour. I am having a bone scan next week but I just want to be prepared. What does bone mets feel like? Is it a constant pain? Or does it go away and come back?
ps. I was stage 2 with lymph node involvement but am a few months post all treatments.
Thanks ladies!
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Hi, stephanlegee ~ Besides possibly being from your tissue expander, I'm wondering if what you have is a bit of truncal lymphedema. Lymphedema most often manifests in the arm, but there's also truncal LE, which can cause intermittent discomfort in the underarm, rib area and back due to fluid buildup that can come and go. You can search "truncal lymphedema" here for more information. Truncal LE tends to be exaccerbated by heat, so prolonged hot baths or using a hot tub can cause it to flare up.
As far as pain from bone mets, I think it varies from person to person, especially depending on severity and location. For me, I would describe it as either a burning pain (ribs) or an aching pain (more in my back), and it tends to be worse for me in the late afternoon or early evening, depending on what I've done physically during the day.
Hope this helps. Sending good thoughts that your scan will be totally clear, which I think you're wise to have for the peace of mind, as well as a baseline going forward. (((Hugs))) Deanna
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Made an appointment for bone scan Wed. morning. Don't have a lot of pain, only when I turn wrong or strain having a BM.Then it can be very strong.
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kathec Thank you.. Hopefully they are nothing. RO said that at 2-6 mm they are too small for a pet scan probably so she said a repeat CT scan in January is really all she can offer at this point. She said she cannot tell if they are solid or if they are an inflammatory reaction to chemo.. I had my spine and pelvis MRI yesterday. .. when the Mri tech came in to do the contrast he said, his Grandma has metastatic cancer but is still doing ok and alive still at 5 years and just gets check ups every months. I don't know why he said that.. made me freak out even more lol Am sure he was just being chatty..but it just made me worry.
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jdmac, it's so funny! The head guy who runs the nuclear medicine department at my tx place, after my second eyes to thighs bone scan, helped me off the table and told me, "good luck" and didn't say anything else!! The first one he had done the year before, he was much more chatty! We are prone to worry, aren't we! I kinda wish they were able to tell us right there, "nothing to see here!", Or, something like, " o.k., we are gonna see what this spot might be, and I will let you know asap, wait right here!" I think that would be great!
So, here is to great test results to jdmac, bonnets, stephaniegee, kbarry67, and everyone else who is worrying! I a;ways tell my mom who is a great worrier, that she shouldn't waist her time worrying on the weekends at least! Because you really can't do anything about it on the weekend, and if it was an emergency, you know what to do!
I have had rib pain every. single. day. since surgery. Nothing is ever there, I swear I can feel a lump.
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Question about bone mets if someone could answer, please, who knows about this. I'm having extreme anxiety.
Long story short - 4x bc in the breasts in the last 9 years with a 5th recurrence recently along the left chest wall, removed surgically and rads scheduled to start 12/8. My. CT scan shows no issues, bone scan shows no issues, PET scan comes back today with "multiple bone lesions scattered in your spine and hip" (MO's words). She wants to talk to the radiologist who read the scan, she says that since they didn't "light up" on the PET scan that her instinct tells her that it's not bone mets even though and that after talking to the radiologist that she will probably send me for more x-rays.
Is there anyone around who can help me? I also have degenerative disc disease and pretty severe arthritis - could it be one of those? Could they show up as lesions on the bone? Do bone mets always "light up" on a PET scan? I don't even know what else to ask...
I'm about three heartbeats away from a full blown panic attack. Why didn't I have her send some anti-anxiety meds to the pharmacy?
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