If you are not Stage IV but have questions, you may post here
Comments
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Cancer does indeed hurt, and i do not have cancer to the bones. I don't understand this widely held view that cancer does not hurt
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Hi Johnboy in answer to your question 'does cancer hurt' .......yes and no. There are many women who are diagnosed with bone mets that have never felt any pain what so ever and there are others who are in a great deal of pain. Cancer effects each one of us differently so it is impossible to know unless we are given the scans. I understand your fear but you are due to have staging scans in a few days and they will let you know if you have mets or not.
It is possible that you are so worried that you will get bad news that what you are feeling is nothing more than that fear showing itself through the pain in your back.
It's a great idea that you have asked for your results to be kept back until after your Birthday that way you can really enjoy your celebration. By the way, Happy Birthday for the 17th!
Good luck with everything and please let me know how you get on.
Love n hugs. Chrissy
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Hi Johnboy. ..Im not sure if cancer hurts for everyone but I do know for sure that when I am stressed and worried and fearful my body hurts in places it didn't hurt a week before...stress causes increases in cortisol levels and this can easily cause aches and pains throughout the body and inflammation....when we are stressed we hold that stress in places on our bodies too and everything gets tight....this has been my experience...hope it helps
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I wrote an article in my workplace about breast cancer. I also included the fact that 30% of all patients will later have stage IV. I received feedback from management that a survivor said I was being insensitive. I was telling the truth. I know survivors do not want to hear it; I know I would not. Was I insensitive for including that? I talked about general statistics, types of cancer, types of treament. I also went into different stages and survival rates by stage. Then I mentioned 30%. So my article was not all doom and gloom.
Was I insensitive?
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Almasi, beiong dx with BC is a devastating, life changing experience. Once we get passed those initial shocking weeks, possibly months for some, we are faced with the ongoing fear that even though we have done all treatment required, it will return.
We all know the statistics on becoming stage IV but part of dealing with the fear of that is living in the world of 'denial'. Unfortunately what you did with your article was point out in big bold letters that which most try to relegate to that land of denial.........it was possibly not so much insensitive in itself, but confrontational and, for a survivor, being confronted with those statistics is again being faced with our worst nightmare.
Having said all that, I would like to thank you for getting the word out and I would really like to read your article as I am already stage IV and no longer have those fears.
Love n hugs. Chrissy
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Almasi, in addition to what Chrissy said, I think the fact that it was Breast Cancer Awareness month -- which I understand was the reason behind the timing of your article -- just puts waaaay too much breast cancer awareness in the faces of those who have already survived it or are still living with it. All the pink is overload for us and heightens our PTSD response, which often includes a lot of suppressed anger. It sounds like your article may have provoked some of that anger by putting it in her face at work -- probably a place she didn't necessarily expect to be reminded of it.
Just my take on it, without having read what you wrote. (((Hugs))) Deanna
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Dear Almasi.... I guess one could argue that a paper on BC may not be complete without statistics ..... but I have always held to the belief that we are so individual in our journies that to minimize us into the realm of a statistic is meaningless .. .... in fact I have never read a statistic about my cancer or my survival ever ...and I caution my children not to take those numbers as an inevitable fate should they go on line to look things up.... that has always been a fear of mine with the kids.. those numbers are based on curves and a multitude of factors... so many have defied those numbers and when you get all that in your head it has the risk of becoming a self filling prophesy sometimes ... we are bombarded with verbal and visuals about breast cancer through the month of October and I think as Deanna said, it puts survivors on overload and can tap into PTSD.. these are just my thoughts of course and clearly you could not know how every survivor who read your paper would react so don't beat yourself up ... it didnt come from a mean place ....
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Ho ladies, new here have been on the "older women's " board off and on for 2 years. I'm an ole lady of 72 this month!
I have been having rib pain on my lumpectomy side for several months. My MO did a rib series X-ray, which was neg, 2 months ago. Still having pain when I reach, strain and to the touch. Went to my Rads onc yesterday to see if he thought it was from rads, I finished them 2 years ago. I know it is a possible SE of rads. He thinks maybe inflammation, put me on Ibuprofin for 10 days. He also did a repeat rib series, won't know the results til Wed. I know X-rays don't always show bone mets , so even if it is neg I'm going to request a bone scan or MRI!
I am BRCA neg, though my daughter passed at 32 from BC diagnosed at 27. No other family history No one seem s to be worried but me, can't help but think this is bone mets. Thanks, Jean
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Hi LadiesI'm currently worrying and I'm hoping needlessly. I want to ask about what symptoms feel like with brain mets? I've been experiencing dizziness, ringing in my ears, dull headache behind my eyes that has been fairly constant for the last week. Sometimes my head hurts more than others, but it has been steady none the less. I have felt off balance too at times and just off in general in my head. I know all of these symptoms could be anything but mets, but I'm worried. I had a scan back in June when I was in the hospital after I passed out after chemo. They saw something on my brain so I had an MRI and they ruled out mets then.
My MO told me to stop the Tamoxifin I've been taking for a week to see if symptoms improve. I've only been on it for a month as it is...so I don't know. I see her next week for a follow-up visit unrelated to this, but I know we'll discuss it.
Am I just being paranoid, are these symptoms at all consistent with brain mets? I'm freaking out to be honest. Any input is appreciated.
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Happy Birthday this month Jean! I'm with your onc with your question as I have had pain in my ribs every since my mx. I have had numerous scans etc (as I am stage IV) but never anything shows in my rib area, no mets there and never have been. Hopefully the anti inflammatories will kick in and the pain disappear. I know it's so easy to talk ourselves into thinking something is going on but I always say, wait and see what the docs think and go from there. Deep breath and try to relax a little. So sorry to hear that you lost your daughter to this disease, loosing a child is never easy no matter what the cause.
Tangandchris, more often than not brain mets are found when there are no symptoms at all but yes, headaches, blurred vision, buzzing in the ears, loss of balance can all point to brain mets but again more often than not the cause is something else entirely. If you are new to Tamoxifen ( and being on it only a month is still new), I would be thinking all of those symptoms can be caused by it and it's effect on your body. Do as your doc suggests and hopefully your symptoms will abate. I know it is terrifying to think that your BC has metastasized to your brain but let me reassure you, brain mets are reasonably rare so try to relax.
Love n hugs to both of you. Chrissy
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Thanks Chrissy,
I do tend to think the worst, as I know too much. I used to be an RN, many years ago, am a breast health educator and followed my daughters BC fight for 6 years! Am watching the Ibuprofin carefully, as it is a high dose for 10 days. It gave me an ulcer some years ago, taking it for arthritis, which I told my onc. It does eliminate the pain, which is nice. We will see. Waiting is always the hard part. Will ask for a bone scan and /or MRI no matter what! Thanks, Bonnets
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Jean, they say the knowledge is power but sometimes it can just bring worries. Glad the ibuprofen is easing the pain for you.
Love n hugs. Chrissy
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Chrissy-thanks for the response...trying to just not obsess on the what ifs. I keep saying to myself there is no way possible this could be brain mets, that is just crazy thinking! And then I think yes, but you thought there was no way you had BC too and it was. Does this crap ever get easier??((hugs))
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T&G nope, not really, you just learn to get passed it and not obsess. I have a tendency to go through everything else it could be before I hit the big switch and run for tests and sometimes when my doc what's to do a test I tell him it's not necessary.......lol......the last CT he sneaked in on me, told me we were going for an xray!.....Fibber!.....lol.......and I didn't realize until I was on the phone to make the appointment!
I know it's hard not to obsess but if every little thing sends our minds to what we fear most, we would never have the time to just get on with living.
Here's hoping your symptoms ease if not disappear now you are having a break from Tamoxifen.
Love n hugs. Chrissy
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Hi tangandchris, I saw your post and just wanted to share my experience. I've had the same issue with headaches, dizziness and vertigo and was concerned about brain mets. My MO told me to take a tamoxifen break for a couple of weeks to see if it got better - apparently these are not uncommon side effects. So I did, and I stopped having the headaches/dizziness. After a month break, I've started the tamoxifen again and I've been OK, but it starts happening again my MO is going to switch me to an AI.
I hope this eases your mind a little - take care!
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trying to figure out how to work this forum, I'm new . Had a pet ct scan. It showed numerous fdg uptakes. The report on strands of soft tissue near mastcetomy incision maybe from rads but can't rule out reoccurance . Rad onc is delaying reconstruction watching for ibc reoccurance . Also had idc .
Now the lungs show moderate uptake on part of exisisting
lung nodule along with increasing nodule opacities . Report I fiction or imflammation . No symtoms . Question is shouldn't there be a biopsy in the soft tissue and further look at lung? I'm stage 3 and can't help but be anxious of the next stage . Trying to be positive .
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Hi Mamajen and welcome! Sometimes the docs use the 'wait and see' thing but you as the patient can ask for and receive a biopsy if that is going to make you feel better. As for the lung, what shows up in a CT can mean a lot of things, not just Cancer. If it is Cancer, it may well take another couple of months to really show up on a scan. I know it's very worrying for you but just remember, you are in the drivers seat and the docs work for you so if you want something done just ask and also you can ask as many questions as you have to make you satisfied that every thing is okay.
I hope that has helped, even just a little.
Love n hugs. Chrissy
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thank you, yes the wait and see. My onc has a way of second guessing herself after studying and probably consulting with other drs. At Baylor scott and white they have an oncology board meeting every Tuesday. Of course not all patients are discussed so who knows. But what baffles me is the lungs, infection or imflammation from what? It's not been a good year . The chemo damaged my heart and taxotere reaction left me with neurothopy in feet and hands So the port was pulled and no herceptin onc wanted me on for a year. Have a cardiologist on board now with more pills. On the bright side At least I won't ever have to have a pap or exam again . ( hate those ) . Anyway t it feels good to let it out . And klonapin helps a lot . ☺️ I told the drs this watch and wait is turning me into a bonified hypochondriac . A total complete life changer .
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When did they change the top where it said it is for stage four only? Was it always like that? I didn't think so... anyway.. Hi Chrissy, and just thanks again for being you! I am very happy that you mentioned that you have had rib pain since your surgery, too. I thought I was being freakish, as I have had pain there myself since surgery. It probably happens much more than we think.
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Thankfully for this thread, I was able to go back and see just how long this elbow pain has been going on. We'll it has been 3 months. Now I am waking with pains in my legs. Really need to stay off google. Everything it says points to bone mets. Just had my tumor markers done, hoping they have not gone up again. Three months ago they were 37. They started at 27 when diagnosed, and have been slowly rising. Oh my, I am in a really bad way. I just can't stop myself from waiting for the other shoe to drop. My question should I have pet scan or bone scan if the subject comes up. Doesn't a pet detect bone mets as well as mets to organs.
Sue
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Bonnets-
We're so sorry for the pain you're experiencing, we hope you get relief soon. Hopefully the xrays don't show bone mets, but it may be a good idea to request a more in-depth test just to be sure. Please keep us posted on the results of your xrays, you're in our thoughts!
The Mods
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Dear Crissyb
My Wife who was diagnosed stage-3c in June 2011 and has been ER+,PR+,HER- and she is on Tamoxifen
last tuesday she developed mild tremors in both hands and slurred voice while doing some household work
we went to MD who ordered a brain mri with contrast which by Gods grace was totally normal and he referred us to Nurologist
Neurologist conducted a nerve conduction study and even that was Normal and diagnosed her with--ACTION TREMOR
and prescribed Propanol-40 twice a day
today the voice tremor is totally gone abut Hand tremor still persists , although better by 30 to 40%
can you plz guide me ( is thsi cancer related?)
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Thanks again for the feedback on the head stuff. I left another vm for my MO's nurse, just want to pick her brain. I don't want to be worrying constantly and I am not sure how to get thru all of this w/o thinking about it. In some ways this feels harder than going thru tx mentally.((hugs)) to everyone struggling.
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Hi Many, so sorry to hear that your wife has suffered a neurological problem. I would be thinking that because of the clear scan for mets as well as what the neurologist has said, I doubt very much that what she is going through has anything at all to do with Breast Cancer itself.
I'm so glad that the Propanol has done her some good and her voice has returned and the tremors reduced..........maybe with a little more time on the medication they will go altogether.
Hi Kath, as to your question re the header for the page, yes, it has always been listed as it is but this post is pinned as the first post in the Stage IV threads so this is where questions and concerns are asked and answered. Any and all stage IV are welcome to come and answer should they wish but there are only a few of use who regularly post here.......but that is okay and I welcome anyone else who may be able to answer a question.
Love n hugs. Chrissy
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Anyone have a similar story?
My mother was diagnosed stage IV, but all of her mets were in the lymph nodes around her chest, shoulder nodes,armpit and neck. So it almost seems like the cancer had traveled from the breast tissue, into the armpit nodes and superclavicular nodes and then up her nodes in the neck. HER2+ Nothing in the lungs, bones, liver, brain etc. Just that network of nodes.
Most of the people I read about here have it in either the bones, liver or lungs. Anyone have something similar to my mom or know anybody who does and how are you doing today?
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I had all those lymph nodes in my armpit. I didn't have any supraclavicular nodes positive, at least in all the imaging they did. They did suspect i had some in mediastinum, which is near your breast bone, but they usually don't remove those, as it is extremely hard to do, with a long recovery, but chemo and rads do take care of those ones, hopefully! My cancer was in the upper inner quadrant of my breast, so I guess it surprised them that it didn't go to my left breast. Hope that helps, and i am doing pretty good. I was pretty suprised i wasn't stage lV, but then eight to ten years ago, i would have been, according to how they used to stage it. Good luck to you and your mom!
Thanks, chrissyb!
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Hi Almasi, I was diagnosed at stage IV, with similar nodes to your mother, large breast lump, nodes in neck, centre of chest and underarm, but I also had a teeny weeny spot on my lung. ER/PR neg and HER2 Positive. I had a lumpectomy, Abraxane and Herceptin which got me to NED ( no evidence of disease) it came back in the same breast and chest node, so I had a single mastectomy and radiation to the centre of the chest. I am now NED again. After the mastectomy, pathology showed it had morphed to triple negative.
I was diagnosed nearly 3 1/2 years ago, only on Herceptin now, sticking with that in case it morphs back to HER2 positive 😀 I hope this gives you some encouragement, I am doing really well, hopefully your mother will also. Xxx
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Thank you kathec and dawny. My mom is doing taxotere/perjeta/herceptin and surgery is not an option because of the location of the nodes. She already had a mastectomy years ago so the recurrence was in the chest wall where the breast used to be. After 2 rounds of chemo the only positve nodes left were the superclavicular so we are hoping chemo takes care of those and/or radiation. I came here all the time and have learened so much and gotten a lot of emotional support just reading all of your posts. Thanks all of you amazing women!
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Dear Ladies,
First of all, I apologize if I am posting in the wrong place, (am not diagnosed but have funny things happening).
Last year, I had a IBC scare and we never found anything to prove it. It was considered as mastitis of unknown etiology. A breast reduction just showed fibrcystic changes.
This year, I've had really bad headaches so had MRI done, 2x, 4 months apart. No lesions enhanced but I do have 10 small lesions, the biggest 5mm, smallest punctiform. Diagnosis aspecific white matter lesions and have been told not to worry. (MS excluded)
Now, I'm probably being paronoid but for those of you who did/do have brain mets, how did they present themselves? Do they always enhance on MRI. I can't shrugg the funny feeling that something has been missed, but it could be anxiety but any insight would be helpful.
Thank you and I'm sorry if I may sound nuts but I've been having undiagnosed ongoing problems for 15 months and now the brain!
You are a strong supportive community and I admire your strength and sisterhood
Alicki
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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
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