If you are not Stage IV but have questions, you may post here
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that would be great. I have a BIRADS 3 spot....I wish they would just confirm a 100%.
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She said they don't look like cancer but hasn't got the results yet. I asked for a biopsy and she's sending me to a surgeon for that. She upped my anxiety med for a few days. I'll let you know results soon as I find out.
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Hi Ladies,
For the last two years my gastro has been trying to figure out why my ca19-9 have been fluctuating. After many scans, upper/lower procedures, and eus's, it is not my liver or pancreas. I have thickening of the colon wall. Which would explain my severe nausea. My gastro told me 5 months ago, we've ruled everything out, now we're looking for cancer. So does this mean, no cancer at all since liver and pancreas are fine. Do mets travel to colon? He's ruled out diverticulitis, ibs ect.
Last Tuesday I had an eus and a cat scan. Now I'm scheduled for a colonoscopy next week.
Thank you
Michel
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I apologize for bothering y'all. I'm thinking no response is a good thing.
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hi Michele, I am sorry you are gling through this. I dont have input but know others who mat have experience with this will be by soon. Im so glad your doctor is taking this all seriously and doing appropriate tests to determine what xould be wrong.
Good luck, I hope all goes well.
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Michele, I assume you've had a CT scan and/or a PET scan. Those will rule out mets. And truth be told, if this has been going on for two years, if it were mets from breast cancer you would know by now. They'd have grown enough to be seen on a CT scan.
A colonoscopy can rule out colon cancer. If you hadn't been seeing a Gastroenterologist I would have thought this was an autoimmune problem of some sort. Lupus? Is it only nausea? Or do you have a constellation of GI symptoms?
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Pajim, gosh my last pet was 3 years ago. This has been a mystery for my onc and gastro. 2 years ago, I had an ultrasound and found I had gallstones. We thought forsure taking my gallbladder out would make my tm's go down. It has been a cat and mouse game.
My symptoms now are no appetite and nausea fits. They come out of nowhere and last 20 seconds. Nothing ever comes out, just very loud. The no appetite is a puzzler tho.
I always think those c cells are sneaky
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Hi Michele, so sorry this has been going on so long and I do hope you get to the bottom of it all very soon.
Your symptoms sound like a liver (as opposed to gall bladder) problem but I'm guessing your doc has already gone that route.
Inflammation will also make your TM's rise so it's also a possibility that, as was suggested by pajim, there maybe an autoimmune thing going on.
If you haven't had a full body PET perhaps that might be a first step to finding out if there is cancer activity.
Good luck and I hope you can get some answers soon.
Love n hugs. Chrissy
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Michele, I had to look up CA19-9. If that's what you're getting, it looks like it's a test for pancreatic cancer markers. Is that your understanding of it?
The tests commonly used for bc are CA27-29 and CA15-3, as well as CEA, which is also a marker for colon cancers. I would hope that one of your docs would check those as well.
I'm not familiar with thickening of the colon wall, but agree with Chrissy that nausea can be an early sign of a liver issue. I also had a friend who recently had gallbladder surgery, only to discover that the severe nausea that surgery didn't help was due to an infection they'd missed in the duct attached to the gallbladder -- not the gallbladder itself. In his case, very yellow skin was another sign that something wasn't right.
And if you haven't had a PET for 3 years, I would think that might be a logical screening tool at this point -- just to be sure everything is covered!
Good luck, and please keep us posted! Two years is a long time to go without a dx. Deanna
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Hi ladies, still no real news for me. I took the 5 days off baby aspirin just like they told me after the ultrasound, went back for the biopsy and the radiologist working that day didn't feel comfortable doing it since the mass is sitting right on the implant, she was afraid she could puncture the implant, UGH! So she wants me to have a breast MRI but that takes 7 days to be precerted by the insurance gods that be. So, I'm going to a new breast surgeon tomorrow and MRI is scheduled for Wednesday. I'm really going to be aggravated if it turns out to be CA and they then send me back for a whole body MRI to look for mets which is what they did first time around. I'm going to see if they could possibly do my neck with the chest cause it's really hurting, Last year I had a bone scan and it showed arthritis but it's getting worse. Of course I am a hairdresser and have been standing over a shampoo bowl for 42 years so there's that...... So on top of my oh so fun last 10 days I now have the flu, missed work for I think the 2nd time ever, just took some Theraflu so I should be back in lala land soon. Anywho, no questions just keeping you all updated.
Michele, hang in there, hopefully you will find your answersoon and it will be something treatable and nothing at all to do with CA. I'm with Chrissy and dlb, I would push for the PET.
dlb and pajim, were you on aromatase inhibitors when you discovered the mets?
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I was on tamoxifen. Had been for four years. But when they looked back at the original PET with the Stage 3 diagnosis they decided that maybe that spot they thought was nothing was mets after all.
So it could be said that tamoxifen was my first treatment and it lasted four years. I refuse to worry about it one way or the other.
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Jumpship,it feels like a thumb is the best way I can describe it. The breast surgeon thinks it's nothing to worry about, she thinks maybe the alloderm shifted and scar tissue formed over it. I have the MRI on Wednesday and meet with her on Friday so I should have it all figured out by end of next week. I'm really not nervous about it anymore, decided there's just no point.
pajim, I know what you mean, worrying is useless, just makes us tired. I'm getting better at not doing it.
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Thank you ladies. Mycolonoscopy is next week, I'll let y'all know.
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Im asking for my wife.
She is currently stage 2b and all her scans except CT on her chest showed small nodules at the bottom of her lungs. The doctor and report didnt say they were suspicious but follow up is needed.
She just finished her 6 rounds FEC-D and follow up scan is next Monday.
Is there anyone else that had spots on their initial CT scan? If so, what were some of the characteristics of the spots did the doctors say made it suspicious. Our doctor just advised he didnt see anything else suspicious because if he did, he wouldn't have put her through FEC-D right off the bat.
Any info would be great.
Stage 2B Grade 3 Tumour
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nodules are very common from air pollutants. I had one that was followed 2 times in the 2 year period that is protocol. That was declared stable, not cancer, and another one popped up. Cts give off radiation so not sure im going to keep going for ct unless i have symptoms.
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Hi Ryan,
I - too - had a nodule show up on my first CT. I've have a few CTs done to follow-up (to make sure it isnt really anything). And, it just stays there. Not bigger, not smaller. Just there. And, harmless. I've heard these are pretty common...and not unusual at all to have more than one.
Hope that helps! And, God Bless you for being such a wonderful support to your wife!!!
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Hi everyone, As you're not Stage IV on this thread, I thought I'd share this article with you in the hope it will be of some benefit in stopping the spread.
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Hi girls, still waiting, had mri breast MRI yesterday, should hopefully get the answers today, see BS again tomorrow morning. Should have lots of answers before the weekend. I've been battling the flu/cold whatever the heck this crud is for over a week. Woke up this morning feeling like I've turned the corner, I still sound like a 13 year old boy but getting better. Knee replacement in 6 days, phew! Off to work. I'll keep in touch.
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Hi - I had last chemo 12/21/17. AC followed by Taxol. Taxol gave me a lot of muscle/bone pain. After last chemo, I felt like I had the flu my muscles hurt so much. Now, I can go a few days with nothing, then the aching starts - usually starts surgery side upper back, the spreads entire upper back, collarbones, hips - even my knees sometimes. It can feel like my skin is sensitive to touch. It seems to go away when I’m sleeping. I’m getting rads now and my RO is adamant that it can’t be be bone Mets. She says I’m still recovering from chemo and the fact that blood work shows it did a number on my thyroid. I had a bone scan in May that was clear. Im just scared and really thought I’d feel better by now. Does this sound like bone mets? Tha
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VL22, the pain you're describing does not sound like typical bone mets pain to me -- especially because it comes and goes. And looking at your stats and the fact that you had a PET just a few months ago supports my initial reaction.
I'm curious though, why did you have chemo with a <1 cm ER+ Her2- bc that was Grade 1 with no node involvement? Did you have a high Oncotype score? Deanna
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that was my initial diagnosis. During surgery, found 1 cm TN tumor and a micromet to a intramammary node next to the er+ tumor
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Oh, I see! Thanks for clarifying! Just to add some thoughts... It can take many months for any latent effects from chemo to dissapate. I remember having a severe, stabbing pain in my right shin for several months after chemo, for which there was no explanation -- just some random nerves firing or something like that. Also, the fact that you mention pain in your knees led me to think it's something other than mets, as mets very rarely turns up in knees.
Are you on thyroid meds now, or are they waiting to see if you recover naturally from whatever is going on with your thyroid function? That might explain the skin sensitivity.
If I was in your situation, I would probably give it more time following R/T before worrying just yet. But if the pain becomes worse or truly is impacting your QOL, then you may want some additional blood work, etc., to figure out if something else is going on -- not mets necessarily, but something else that's gotten out of whack.
Good luck finishing up R/T. Please keep us posted! Deanna
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Thanks Deanna - I really appreciate your imput. I’ve been on meds for hypothyroidism for three years and in normal range - the chemo put me way out of that range.
I had my weekly appt with my RO today and she said what I’m experiencing can be “fairly common”. It is more mentally draining than anyth anything.
Thanks again
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Hi, I am not stage 4, stage 2, but have a friend who is stage 4. I have not seen her in a year as I was away traveling before being diagnosed myself. Since I have been back, I have reached out to her and at first, before I was dx, she was into going out for coffee but since I have been diagnosed, she is not very receptive to seeing me. Any stage 4 people out there know what she must be feeling? I am for sure respecting her need for space, and not pushing at all, but I would like to understand. It would be nice to be able to rekindle our friendship, and for me since I too am going through chemo. Anyway, if anyone has some insight for me I would love it so that I can be as gentle as I can with my friend.
Laurie
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Hi indahood...I'm Stage 4 so I'll give you my thoughts. Bear in mind that these are my thoughts and in all likelihood bear no resemblance to those of your friend. Firstly, if you haven't seen her in a year it's possible that there has been a change in her thinking during that time. Speaking for myself, a year ago I had been diagnosed for four months and until recently I've been in denial. I have a very confident, positive attitude but reality has dawned upon me that I will never be cured, that I will live with this disease until I die, either from it or from something else before cancer takes me. Because of my cancer I've had to move out of my home and into a small apartment because my husband and son work full time and our house is large with stairs. They travel for business so a lot of the time I have to look after myself which is impossible in a large house but just possible in the tiny apartment. Only just. My husband is past retirement age but has continued to work because we don't know what is in front of us financially. We may have to spend a lot of money to have a carer look after me if I progress. We live on a knife edge from scan to scan every three months to find out whether I'm still stable. Fortunately, so far so good but it's never out of the back of our minds.
This is the difference between having curable disease and incurable disease. At Stage 2 you have every hope of remission or cure. At Stage 4 we will never be cured. Our hopes are always for stable disease and the very very best we hope for is regression but it depends on our prognosis, the site of the mets, the amount of mets and whether we are responding to treatment or whether treatment is at least controlling the disease.
Your friend might not feel like discussing her breast cancer with anyone or perhaps with you because of fatigue, sickness or just plain being fed up with having cancer and not wanting to talk about it. Sweetie, the fact that you are both having chemo at the same time doesn't give you common ground when one is at Stage 2 and the other is at Stage 4. Also, at Stage 4 cancer has taken over our lives and has done so usually for a long time and the last thing we want to do is talk it over. We're either too unwell or we're looking for diversion from it.
She also more than likely is no longer into going for coffee. A lot of us have stopped doing that. In my case it's because I have mets in my bones and I'm in a lot of pain and chairs at cafes are uncomfortable and leave me in worse pain for several days afterwards. Sadly, a lot of us can no longer drive. I can't because of the opiate pain meds I need. We have low white cell counts from our treatments and are told not to be in crowded places for risk of picking up an infection that leaves us in hospital.
I've spent a lot of time considering your situation, Laurie and trying to express it carefully. This is only my take on it but I think it's probably how I might feel if I were this friend at the moment. I hope this helps you sweetie.
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Hi girls, just wanted to stop in to say my MRI was clear! Just scar tissue, phew! Respiratory crud is finally gone and I'll be having my knee replacement on Wednesday as planned. Thanks for all your kind word and the board to voice my concerns, It's so appreciated.
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Good to hear that all is good, Genny. Goodluck with your knee replacement.
Love n hugs. Chrissy
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Indahood-one of my reasons for not wanting to be with those with BC who are not Stage IV is not to frighten them. We just can't know who will progress to StageIV, so why make people fret unnecessarily. Also , it takes someone with Stage iV to truly empathize with another Stage lV person.
Best, MJH
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Hi to all my mom was diagnosed with stage 3 breast cancer in 2015.
Now from past 3-4 months she feels something tickly in her throat and frequent throat clearing.Tickling feeling make her cough hard but nothing comes up.This is continued from past 3-4 months and tickling occurs 4-5 times a day everyday.She tried gurgling but of no help.So her onco ordered pet/ct which showed reccurence in the same breast and one lung noule in each lung the nodule on the left lung same side as bc showed mild fdg uptake.Both nodules are subcentimetric.
Currently we are waiting for biopsy results from her new 2cm mass .Also both lung nodules are ground glass.The one on the left side was there in ct scan of sept 2017.And the right one is pleural based. please help.
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Hi Katie, sorry to hear about your mums' recurrence. I have had the ground glass nodules in my lungs for years.......they never change and are apparently quite a common occurrence. They will always show up on scans but after having them there for years I no longer worry about them at all.
Keeping everything crossed that your mum does well with her new treatment.
Love n hugs. Chrissy
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