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I just finished my Herceptin. My tumor markers are up and they want a PET scan. I had internal and subclavicular nodes light up before treatment. I had no response to chemo. I pinned all my hopes on radiation! I know the odds are not in my favor. How do I keep my head up? I guess it will be better to know
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Hi Fraidycat knowing that you didn't respond well to chemo in the first round is really disheartening but as far as the Herceptin goes, it is touted as the magic bullet for Her2+ along with Kadcyla, so it's very possible you have had a good response to it. Your needing a PET is to make sure of that.
I hear you on not knowing which way things will go as my story is somewhat similar but never give up hope as there are so many treatments available to us now that were not available just a few years ago. Being +++ give you the opportunity to be given one of the AI's and even though they are just a little pill, they are in fact very powerful.
I have mets to my bones but I have been NED for almost five years now and my treatment has been Femara (an AI). Sometimes knowing is far better than guessing as when you guess there are so many 'what if's' involved whereas knowing makes it so much easier to get on, do what needs to be done without fear and be able to face each day with a smile.
I'm keeping everything crossed that you PET shows good results for you.
Love n hugs Chrissy
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Fraidycat, I am not Her2+ but other than that my dx sounds very similar to yours. I had 10 of 11 nodes, all full with extanodal extension. I had 6 rounds of chemo prior to surgery and had no response at all. I have hoped the radiation did the job, I have been on Arimidex for about 20 months now and so far so good. I have been to 3 MO's, none of which will do TM's even at my request. My bi-annual appt is due in Aug so I am switching to an old school MO that believes in TM's. I found him through another BCO lady. Fingers crossed for you and a clean PT. Please let us know when you get your results, it is so nerve wracking. (((hugs)))
Oh, and thank you to you stage IV ladies for listening, helping and understanding. You are so helpful and important to us.
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I've heard that tumour markers can go up as a result of treatment. The dying cells give false rises in the markers. I think that's why a lot of MO's don't do them. Also, what if they didn't pick up something that needed to be noted? I've never had TMs.
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I've had TM done from the very first day (CA 15-3) and a couple time the CA-125 for ovarian due to a cyst that stayed there for 3 years. Nevertheless, mine were not high, the highest was right after chemo (13 when the worrisome threshold is 30 and up) and since they've been going anywhere from 3 to 6. Tumor markers are not 100%, many other conditions can raise the levels, and in some cases cancer may not raise the level (like it seemed to be my case, before mastectomy my level was 8 so way under the threshold). My onc still does them at every visit, he said that better safe than sorry and if there's 3% chance to catch something early he will use that chance. He is a sweetheart though, and if anything seems suspicious he will get right on top of it and order imaging and all that.
Barbe - (((((((a bazillion hugs))))))
Day
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{{{{{{{{{{{{{ seachain }}}}}}}}}}}}
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Hi, 3-16-20011
I think your post was a few years back now,
but...you have pretty much the same original dx as me, and treatment..ecept i had bi lateral disease.
I'm posting here because my body is a bit haywire at the moment. The rib pain , worse with movement is how I would describe mine. My right side cancer came back, 2012, but was a different type(lobular) from 1st dx. i am a tad concerned. I have had costochondritas, post rads, on left and right ribs and know what it feels like. this is more sharp. Too early to act on it I think. (a little concerned I admit) Could be stress fracture maybe..as I have osteopenia.
astrid.
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About a week ago I found a lump, about 3 inches below the bra line, not near the sternum, direct center, about where I imagine the esophogaus enters the stomach. This is why I thought at first, I might be feeling a hiatal hernia, but after consulting Dr. Google I realized a hiatal hernia was probably not palpable. I had had a lot of stomach pain October - January which was new, but I decided at the time it was from eating eggs too often. Except for a few random stomach aches, nothing like last fall. (My maternal grandfather died of stomach cancer at age 42 and I have the BRCA2+ gene from my maternal grandmother. I am 62.I I was dx'd with IDC, Stage 1A, grade 3, oncoscore 39, 1.4 cm, on 11/11/11. Within a year of surgery with TE and implants, I had developed a lipoma on the outskirt of one of my implants. It was biopsied. This feels as hard, but not as movable. I would say it is either embedded in the muscle tissue or my fat layers (I have enough of that), but more likely the fat tissues. Hard to know. I can somewhat grab the top of it and it seems to be a inch in the vertical and 1/2 or less than in the horizontal.
I called my MO on Thursday and they said the doctor would get back to me. Well, she didn't, so of course now I have a bit of worry on my brain whether this is connected in any way to my breast cancer. Any thoughts would be appreciated. Hoping to talk to my MO asap on Monday.
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Quinn, this might sound overly simplistic, but it sounds like the area you're describing might be your gallbladder, which, if inflamed and/or if you have a gallstone (not sure if you can feel those), could account for the pain. Gallbladder pain usually comes on after eating -- often fatty foods -- and your pain was triggered by eggs, which do contain quite a bit of fat -- 5 g. each, plus butter or any fat you might use to prepare them. Anyway, just my initial thought upon reading your post.
Astrid, how long have you had the rib pain? Many times, waiting 3 weeks before reporting a new pain makes sense, because random pains often have nothing to do with bc and heal or go away in that time if they're muscular, etc. But if you are in enough pain that you even suspect you could have a fractured rib, I wouldn't wait to mention this pain to your onc, and let him or her decide if it requires follow up.
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dlb - I'm not sure I would feel an inflammed gall bladder and this seems to be above the muscle? I also had an ultrasound of my gallbladder due to off and on pain for years (which I haven't had at all lately), but I thought that was more right of center, than center, and maybe a tad lower, but definitely more right. The US of my gall bladder yielded nothing, but that was about 2 years ago. I also eat the same amount of fat now, or more, than I did with eggs, though I can tolerate a couple of eggs here and there, definitely not a steady diet. I guess the location, dead center, makes me think less about the gall bladder, but it would fit, perhaps, otherwise.
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Thanks dlb,
yeah, I'm gonna wait a bit longer, and if it is still worsening with movement, I'll ask for ..
ooh..x ray or bone scan? maybe both?
astrid.
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QuinnCat, an ultrasound of the upper right quadrant of your abdomen is noninvasive and relatively inexpensive. You could ask about that.
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I guess I'm just trying to get through the weekend until I can remind my MO's office to call me back. My imagination for "what it is" is too far ranging. The latest is peritoneal cancer given I'm BRCA2+.
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First I want to say thank you for all you informative woman willing to take the time to answer questions!!! I started feeling like a pressure under my ribs on my right side memorial weekend reminds me of when I was pregnant and the baby was in my ribs. At times pain feels like it's my ribs, under my ribs my hip and shoulder. My ribs and hip feel like a burning sensation and under ribs is a twinge and fullness like pressure. It's not always in all areas mostly under lower ribs but at its worst it's all from hip to shoulder. Sometimes the pain is worse than others but it has definitely progressed from an occasional pain to almost constant. I've had gallbladder removed many years ago so not that. Never experienced lyphadema but wander if it could be this. I have appointment Thursday to see dr just curious what your thoughts were!? Thanks again ladies
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Hi Gooniesgirl, thank you for your lovely comments.
As to the cause of your pain it really could be anything as the area you are speaking of houses a lot of your organs as well there is always referred pain to take into consideration. It's a really good thing that you have an appointment with your doc to get it properly checked out.
I'm keeping everything crossed that it's something simple that can be dealt with quickly and easily for you.
Love n hugs. Chrissy
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Thank you so much for your quick reply!! I'm 7 years out from treatment and have not thought about cancer in years!! The first few years I would be scared about everything and complain about it to dr. Usually it was nothing and once was 2 fractured ribs in 2013 that I can't explain but they said not cancer related and I'm happy about that but they made me feel silly for being concerned which is why I have waited so long to even see dr. The pain starts to go away and then all of a sudden boom it's really bad! Things on right side seem a little swollen at that time to which is what made me think trunkal lymphodema but never had issue with that before! Again thank you for responding so quickly
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Goonie, Lymphodema can begin at anytime even many years after the injury to the Lymph system so it is a possibility. Don't ever let anyone tell you you are being a nervous nellie when you have a concern over unusual pain........your BC history gives you the right to be extra vigilant.
As I said earlier, good that you are getting it checked out. Please let us know how you get on.
Love n hugs. Chrissy
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Goonie, I'll be very interested to hear what the results are for you as I'm experiencing pretty much the same thing. My liver readings were too high as well, which really had us worried, but an ultrasound just showed fatty liver. I'm still in pain and frustrated, though. Just had a bone scan and am expecting results this week.
How the heck do you break 2 ribs with no trauma? I'd certainly want to know....
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I was having a lot of pain in rib area so They did a bone scan and ribs lit up so then X-ray and ct scan. The 1st radiologist couldn't rule out mets but second radiologist and my dr seemed to think not mets so that was it and must have been right cause I haven't had any pain in that rib area again until now. But pain this time is more under my ribs most of the time. I hope your scans come back clear! I will definitely let you know what I find out
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Goonie, previous injuries light up on a bone scan so perhaps it was your "broken ribs" that lit up. My doc and I both expected liver mets and were surprised when the ultrasound said no. But I've read that fatty liver and mets are hard to differentiate in scans....so now I don't know.
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I got a bit of good news, maybe spectacular news, about this lump on my abdomen. The MO did call back and I have an appointment to see her on Wednesday, but just now.....my gf and I take our regular 1.5 hour hike in the woods on Monday mornings. Today it turned into a nearly 4 hour fiasco. Well, it has been uber hot in California and her dog just did not want to walk when we still had a ways to go. She would literally run from shade to shade, then she finally stopped. She's had other issues with her legs/paws, but ultimately we figured out the dirt was too hot for her paws. That was a first. I'm exhausted as I trudged ahead to the car to retrieve more water - I wasn't doing to well on the way back to my friend and her dog. In the meantime, my gf called the husband. My gf's husband is a recently retired surgeon (and just the type of person you want to rescue you - an unflappable ER surgeon), so he got up to our spot (past a gate, some 4 wheeling and the rest hiking) and he checked out my lump. He thinks it is a lipoma or hernia!!! I'm still keeping my MO appt, but what a relief.
Then he put socks on the dog and we trudged back to the trailhead for a nearly 4 hour adventure. Thanks to all that responded with kind words. I will confirm with what the MO says Thursday.
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Thanks Kay. He did say lipoma first, so maybe less likely a hernia. I will be seeing my MO Wednesday and she tends to send any odd symptom for a test (I've had 2 false alarms resulting in a total spine MRI and an ultrasound and biopsy of something left over from my BMX). But, I will heed your warning. Thank you again.
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I'm officially scared to death - I've been having odd headaches for about four weeks, the last 2-3 weeks pins and needles on the left side of my head, right above my ear creeping over to my temple and face. PCP last weeks said it was a tension headache. Spoke to the MO last Thursday, she didn't think it was anything but made me promise her that I would tell her if it didn't subside. Over the weekend the tingling got more persistent (waking me from sleep) - so she ordered a brain MRI today. When I met her in the office she didn't see any physical symptoms, which was reassuring, but being HER2+ and locally advanced, I am starting to freak myself out. I don't know if it's better to know or not know. I'm not even half way through rads.
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Ok, QuinnCat. I'm so glad you had the chance to get that input from him. Such a sweet photo of the doggie with socks. It's good you guys figured out what was wrong. She needs some little doggie hiking shoes now.
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fightergirl. I have no medical opinions, but I know what concern you must be having. And that concern can exacerbate things too. And I totally get the do I want to know or not want to know options and the flight or fright response. Will be watching for any news from you. xxo
ShetlandPony - I think there will be no more walks at 90 degrees. For some reason we both spaced the temperature and usually I'm more prepared with water. It was total brain fart on both of our parts. We are going early on Wed AM. At least it brought the doctor to us!
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Barbe,
I have fatty liver too. It seems that both chemotherapy and Tamoxifen can have non-alcoholic fatty liver as a long-term side effect. I had several scares because of that, one time my alkaline phosphatase (that can show bone mets) shot up and I had an ultrasound that showed nothing more than gall bladder sludge, and it was scratched off as being from me being on a weight-loss journey, not from bone mets. But yes, that is one of the unwanted side effects from treatment. I now don't even worry about it - my liver function panel test came back normal in the last two years even with fatty liver.
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Thank you Quinn and kayb - got the call this morning and everything is clear, thank God. Making an appointment for a neurologist in about a month, hopefully symptoms subside and I can just not have to deal with that too. Thanks again! Phew!
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Chrissy - thank you for easing my anxiety about complaining to dr about pain!!! It helps more than you will ever know hearing someone tell me that!! Barbe- the fractured rib incident was in 2013 dr never really said how I could fracture 2 ribs and not know how or when!! I assume bones are just more fragile after treatments.
Last night the pain was at its worse! If I didn't already have appointment set up for Thursday I would have gone to er! Thankfully my husband massaged my whole right side and I was able to go back to sleep. Odd thing is that this morning I wake up expecting to be in a lot of pain after last night but it's just back to the dull ache with a twinge every now and then! I can't wait to figure out what is causing this and fix the problem
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Thanks seachain, I don't drink so I knew it wasn't alcohol related. I guess just another one of the gifts that cancer keeps on giving...sigh.
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fightergirl - I second with kayb says. Good news, albeit you still have symptoms of something.
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