If you are not Stage IV but have questions, you may post here
Comments
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Dizzy your way of working it out is a good way of doing it and an easy way to understand a very complex thing......good on you!
Genny, if your mets work up was six months ago and a report of 'treatment ineffectual' has come back recently, I think I would be asking the question is it worth doing another mets work up just to make sure it has not gone past the nodes.
It is a worry for you but it is still very possible that the cancer has not gone any further than your nodes and even if the chemo was ineffectual overall it is very possible that it still managed stopped further spread. Good luck with your doc's visit and do let us know how you get on.
Noonrider, your surgeon is right, there is absolutely no guarantee that one little cell did not escape and it's the same for all of us no matter what stage or grade we started off at. What we cannot do to ourselves is live in fear so much that it prevents us doing what we want or need to do in order to be as happy as possible in this life.
Your BMX and recon is planned and I know you are looking forward to feeling whole again so go ahead and have it.........what ever happens later, you will deal with as you have dealt with being dx. We cannot live in the fear constantly as it prevents us from enjoying opportunities as they come.
For myself, I was allergic to Tamoxifen and was refused chemo after the first round as it would have killed me......literally, but I got five years before I was dx with mets and it has been a further five and a half years since then. My life is good and I am able to enjoy time with my family and friends and doing what I love most, getting out and about with my camera.
Love n hugs to all. Chrissy
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genny, the fact that a regimen of TC x 6 was ineffective is somewhat unusual. I'm really glad you're going for a 2nd opinion. I'm personally very keen on NCI-designated cancer centers (explained on my bio page), and it looks like there is one in Cleveland. If I were you, I'd seriously consider going there (if you aren't already), mostly b'cuz they see more breast cancer than other oncologists see, so will have the most experience with situations like yours to guide future tx recommendations. They are also extremely meticulous about testing and will carefully review your tests and treatment to date, as well as order whatever additional tests are necessary to figure out what's going on.
noonrider, I don't think a lot of women who are dx'd with Stage 1 bc move onto metastatic bc. However, our peace of mind is extremely important, and perhaps a PetScan would ease your worries, as long as your insurance company will cover it. And PTSD -- including the constant fear of a recurrence -- is very common immediately post tx, and usually does get better as you get all of your treatment (including BMX & recon) behind you and start to regain a sense of normalcy. But it sounds like a PetScan might greatly ease your mind, so I would absolutely ask your onc about having one, and your planned BMX seems like a logical reason to do one.
(((Hugs))) and good luck to you both! Deanna
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Genny I just sent you a private message. Deanna and I were telepathing Cleveland Clinic.
Question for you ladies: (if you are 3 years out or more). How often do your MO's see you, order scans/blood work ups as, and check for recurrence as part of regular monitoring? 3 months, 6 months, only if you have symptoms, etc?
I suppose we're all high risk or we wouldn't be here.
Thank you for your input in advance.
Hugs,
Katarina
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Katarina I went for my normal 12mth checks and it wasn't until I showed symptoms that I was scanned but maybe the protocol in Aus. is a little different to over there.
Love n hugs. Chrissy
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Katarina, most bc survivor friends report starting out seeing their oncs every 3 mos, then moving to every 6 mos, and around the 5 year mark dropping back to once a year. My onc does/did blood work -- including a CA27-29 -- each time I saw him. Scans are rarely if ever done on a routine basis because, without symptoms, there's absolutely no point in exposing you to the radiation of a CT or Pet. In my case, just about 6 years post my original dx, a weird and severe illness I couldn't shake (totally out of character for me) led to blood work which divulged a significantly elevated CA27-29 and liver functions. Those changes, along with rib pain, were concerning enough to order a CT Scan. But prior to the blood work, even the rib pain didn't concern my onc, who initially chalked my pain off to a severe viral infection.
And here's the link I meant to add to my post above about NCI-designated cancer centers. http://cancercenters.cancer.gov/cancer_centers/ca...
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Deana, I am with the Seidman Cancer Center with University Hospitals which is part of Case Western, an NCI facility. I love my BS and she only deals with breasts, no other parts of the body, and I like my PS and have complete faith in him as well. My MO is very highly respected from what I hear and while going thru chemo people would tell me she's the best and I was lucky to have her. Well, I don't think she ever figured out who I was, I'm quite certain if I were standing in front of her right now she would not recognize me. I figured I'd just get thru chemo and my follow up appt and then look for a new one but then when my path report showed I'd clearly be needing more tx I decided to do the switch now, I need an MO that sees me as a person. The new MO is actually an affiliate of hers, we'll see how it goes. I don't doubt that the T/C was the right course of tx for me, it just didn't work. I suspect the fact that it is grade 1 is the problem. I think the chemo just didn't recognize it as fast growing cells. I got thru chemo with minimal SE's compared to many except for the extreme fatigue. I went thru all this with a pretty good attitude and remained upbeat thinking this was just going to be a really lousy year but I'd get thru it and move on. Well this path report saying the tx was ineffective and the extranodal extension was "extensive" really took the wind out of my sails. I do not have a good feeling about it. Hopefully once my new tx plan is in effect I will start to feel better and begin to look to the future again. Right now it's just kind of consuming me like it did in the very beginning. Anyway thanks for your suggestions, I'll keep you posted.
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Genny, like you, I had chemo first then BMX. Iam one year ahead of you. I had a chest CT mid chemo to check on a lung nodule found on my staging scans. The nodule was unchanged and determined to be benign. However it was noted there was a decreased in size of the axillary lymph nodes so chemo was having an effect even though at surgery I still had many, many positive lymph nodes. Hopefully rads killed anything left behind. Anyway, after a long post about me, I wanted you to know that inefective doesn't necessarily mean chemo did absolutely nothing. I have had two bone scans, a chest CT, and pelvis MRI since treatment ended and am clear so far.
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Thanks Sharon, that is encouraging and it wasn't completely ineffective since it did kill the cells in the breast. I know a pathologic complete response is rare, I just wasn't prepared for so many nodes to be positive and thus the step up from stage 2b to 3c but all in all it seems to be a big old crap shoot anyway. So glad you're doing well, are you starting to have periods of time when you don't think about cancer yet? I can't wait for that to happen. It has so consumed my thoughts and time since February, I know it will always be with me but I can't wait to feel like I'm moving on.
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Yes, Genny, I do have periods of time that I don't think about cancer. I do go in every 28 days for a Zoladex injection but that has become just another thing on my todo list. I get a little more anxious for my 3 mo. Onc. appointments.
I was initially told I was 2b, maybe 3a. I was in shock when my path report said I had 19 positive nodes and I am stage 3c. I had a hard time with that and got a referral to see a therapist who works with cancer patients. You can get things out that you don't want people in everyday life to know. Please don't be afraid or embarrassed to see one. It was helpful and you can stop going whenever you wish. I am not saying I think you need to go just that it's not a bad thing.
I still have fears but I am getting better at talking myself down. When I need support I come here and know that I have other options available to me.
Ok again I go on and on about me. I hope some of it has been helpful. Don't hesitate to PM me if you wish. It would not be an intrusion.
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Genny, as ER+/PR+ you will get more "mileage" from the antihormonal drugs. When I took chemo a few years ago, doc said "that's nice but tamoxifen will do more to prevent a recurrence".
That said, it is odd the chemo didn't work. On the other hand, not all chemos work for all women. If a PET scan doesn't show anything, you should take your tamoxifen or AI regularly and you may be just fine.
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Noonrider - per my PM - I had BMX for DCIS and everything was clear. Came back w/IDC Stage 3b two years later. Not quite the same as your case since I didn't have chemo or rads the first time. Still I'm glad I had the original BMX.
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chrissyb - thank you for starting this topic, there is a lot of questions when dx with BC and the fear for mets etc. I am currently struggling with decision about Tamoxifen - as my MO said it is up to me as benefits and risks balance in my case in his opinion.
I read about your own experience, and the reasons why you did not take it longer, I read other posts and noticed that often even with Tamoxifen or other hormonal therapy the mets or recurrence can show up. I wonder what then is the benefit of that hormone therapy if people still get mets! How to know am I the one that it will work for or the one to only suffer SE and still be not protected. Some say try it you can always stop it but I am scared of late SE that show up much later I cannot sleep as I think and think and worry what should I do to be as long as possible for my 3 boys and hubby... I had cancer before 18 years ago and this BC adventure is a late SE of radiation therapy... as much as I want to get another 18 cancer free years or more I am concern about SE of the treatment to not end up with another serious issues... your posts on this site reminded me that we are all mortal and have to somehow find peace with that fact and it is true but it is hard for me now... somehow when battling lymphoma 18 years ago I did not fear as much... I know I was lucky to catch BC early and by pure miracle as I was not scheduled for regular mammograms due to age (37) had no lump just happen to meet great doctor doing tests who recommended mammogram hearing my past medical history.. now of course I worry a lot, I have pain in my back - chest level, had issues with vision - it is like migraine aura. You wrote somewhere that if it goes should not be mets related, the pain can be muscles and the vision my migraine which I had in the past... but know with fresh BC dx in the background everything I hear in my body looks scary, like shadows on the wall for my kids... I agree too much tests can be harmful, after radiation I already had a lot but when to know should I push for more test? Have bone scan? Head MRI ? After all if not incidental mammogram I may have been dx quite late...
I apologize for such a long post but this mets scare is eating me alive, and the fact that I need to decided about treatment as MO is neutral occupy most of my mind and prevent me from enjoying everyday life..
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Hi Kimag. You are right when you say that there are a lot of decisions that need to be made re treatment when you have been dx with BC. Even with good information and recommendations from your docs and peers it still comes down to what you want to achieve in the long run.
Please don't let my experience with Tamoxifen put you off as I am one of a few, most women have no SE short term or long term and have the added benefit of peace of mind. The pain that you are feeling could well be from the radiation that you have had as it does damage good tissue as well as the bad........unfortunately a lasting effect. Those other things you are describing can all be put down to stress as well as migraine.
I understand that each and every little pain and twinge sends your mind to cancer......more so because you have had to deal with it twice already and your second dx is still reasonably new. Fear is something that we all have to learn to let go of in order to find the peace we all deserve.
There is a test, (I don't know if you have already had this done), that can predict how well you would metabolize Tamoxifen and how effective it would be for you that may give you a bit better understanding of the benefits of taking Tamoxifen. Other than that the only thing I can suggest is to try it and see........once your system has adjusted you may find you have little or no SE at all.
I wouldn't worry about further testing just yet, your doc may not agree with it anyway as it's not long since you were dx and you are right, exposing ourselves to too much radiation is not good for us.
Yes, there is always a possibility that you may develop mets but that is the case for every woman who has been dx with BC. The best thing for us to do is what ever we can to ensure that if it is going to return, it takes as long a time as possible.
Long posts are not a problem.....you may have guessed, I'm pretty good at them myself......lol.
Love n hugs. Chrissy
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Just popped in to say: hi chrissyb! there you are, being amazing again, and helping people! love you!
kimag! i think its just dandy that a mammogram that wasn't even scheduled found it! what a nice sign from the universe that you must be preserved! if I was you, i would go ahead and try it. i am not a fan of them either, but i do like to believe each night as i take one, it is helping me, and its funny! when i take one, i always think of chrissyb! good luck and peace of mind to all!
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Hi Kath, thank you for thinking of me! Hope you are doing well!
Love n hugs. Chrissy
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hi all.
Has anyone been unable to take tykerb? My mum is sick after taking her four tablets each day, to the point she can't stand to take them anymore. They are so huge.
Anti nausea pills don't help. I think it's the sheer size of them. I understand we shouldn't cut them or dissolve them. Her onc has told her to stop until she sees him in a couple of weeks. He wasn't aware they were such big pills
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Hi Papillon, I was going to suggest she contact her onc but I see he is aware of the problem. He may well change her medication if it is causing her so much trouble as their aim is to not only slow the cancer but give us as a good a quality of life that is possible and it sounds like her QOL has been pretty poor with those tabs.
Love n hugs. Chrissy
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I'm not sure where to post this, as I didn't want to butt into the Kadcyla thread and I wasn't sure if I could get better info here or in the Her2 forum. I figured that since it's mostly Stage IVs who have been on Kadcyla, someone might have some info. Apologies if it's the wrong place.
I'm Triple Positive, originally staged IIIc, as I had a huge tumor and a lot of nodes lighting up on the PET scan. I did a course of AC+THP pre-surgery. I overall had a good response but there was still a small tumor left and a little bit of cancer in two nodes. Because of that, I want to be more aggressive than just Herceptin and as my oncologist refuses to give me anymore Perjeta, I'm looking to do a clinical trial with Kadcyla for those with post-operative residual disease.
I am a 29-year old newlywed and have not had children yet. I came out of "chemopause" less than three months after finishing my last Taxol and just had my first post-chemo period. I am unclear about whether Kadcyla would affect my fertility. I know it contains a chemo agent, but that the beauty of it is that the chemo is delivered into the cancer cells, leaving normal cells relatively unharmed. But some chemo must leak into the normal cells, as it seems to have more intense side effects than Herceptin alone. The literature I've read is unclear, as some say that Kadcyla could affect fertility and some make no mention about fertility effects. Oddly, it seems like the literature put out my English and Canadian sources are more likely to mention the possibility of infertility than literature put out by American sources. Not sure what to make about that.
Since Kadcyla is new and has been used mostly in Stage IV patients, I would guess there's not much data out there. But I was wondering if anyone who has used Kadcyla had any data or stories to share. Thanks.
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Hi Bad_at_usernames.........The information I have had on Kadcyla is that it is used for metastatic Her2 + patients only and as for effecting the ability to become pregnant at a future date, according to Roche Australia, at present they do not know what effect Kadcyla has on fertility as no fertility studies have been conducted.
Hope this has answered your question.
Love n hugs. Chrissy
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Hi ladies. For the past few weeks I've had a burning sensation in my vagina area. It hasn't got worse with urination, but it's just there. I've been drinking a lot of water and so have had to pee a lot lately. I saw my Onc a couple of weeks ago and he did a urinalysis which came back clean and he didn't seem concerned. He did a thorough exam and felt around on my abdomen for awhile and did a percussion test there and on my back. He also listened to my lungs and did percussion on my back. He said all felt and sounded normal. I also mentioned it to my PCP and she didn't seem concerned either. She did a pelvic exam and didn't feel any abnormalities. I am scared of infection because of antibiotics. I've had C Diff three times so that's why I'm scared of antibiotics. I do see her again tomorrow. I'm also terrified of bladder mets. My mind is all over the place thinking bladder, vaginal, liver or even brain mets! So I'm having a rough weekend. Anyone have anything weird like this before and it not be anything major? I just read too much sometimes and I know mets can present themselves in unusual ways so I'm scared! Please calm my fears/anxiety. I know you can't diagnose. Just nervous right now. Thanks!
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Hi Luvmydobies there is nothing worse that having fear run rampant and it sounds like it's happening to you. If you have been examined by your docs and they are not concerned then I wouldn't be either as I'm pretty sure they would have picked up something untoward if it were there.
Sometimes the result of treatments interfere with the lining of the vagina atrophying it and this can cause a sharp pain in that area on occasion and maybe it is something like that that you are feeling.
As you say, we are not doctors so you need to follow through with your checkups but you do need to try and let that fear go as it has no place in your life. You have way too much living to do to lose time dealing with fear so stick it in a box, tape it shut, store it somewhere out in the shed and try to forget about it.
Love n hugs. Chrissy
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Good advice Crissy!
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hi...not sure what to ask to be honest, but I've got alot going on. I just finished chemo in June and rads 2 weeks ago.My cancer was on my right breast and right lymph nodes, but I had a bi-mx. I have had several infections on my left side and have scar tissue like crazy. So, back in July I had what I thought was another infection flare up, but that was ruled out.
However, since July I've been having pain on my left side. As of a week or so ago the pain has not subsided and I know have a lump area on my mid-chest area. I finally had a ct-scan friday and MO called yesterday saying it is inflammed soft tissue. She has said this is very unusual and they are going to compare scans that I had in June to see if it has gotten larger. I know it has gotten larger though, I can see it.
She told me she can't rule out cancer and that likely I will need to have an open biopsy to see what is really going on. I'm scared and wonder if anyone has gone thru something similar. I'm not even really understanding what inflammed soft tissue means. My MO was talking a million miles a minute yesterday and I was left very confused.
Thanks for reading.
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Question - how many of you found bone mets on an MRI? I'm having one on Thursday for foot numbness I'm having that has been going on for over 3 weeks. It's progressing up my leg some now. My regular non-onc dr isn't sure what is happening so ordered a lumbar MRI so see if something is buldging, pressing, shifted etc in my lower back that is causing it. I'm having some pain in that area, but not much. Just curious about who have found bone mets from an MRI. I realize that the probablility this is linked to my BC is low, but you know the worry! Thanks for any replies!
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i am sorry that you are going through this,T&C, and i do hope someone will come along and be able to help you with this, but i am here to let you know that i will be thinking of you, and praying that it is nothing dangerous or scary, and that what ever it is, it is easily fixable. i am gonna go and google now.
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Hi momsurvivor, the MRI will, with luck, show what is causing the problem, in the sense of its a disk, or vertebral problem. The MRI won't be able rule in mets or rule them out. If you have bone mets and they are causing problems with the spine, the MRI should show damage to the bone.
This is only my understanding of the imaging modalities. Someone with more knowledge may come along.
It really sounds like something is pressing on the nerve root in your lower back. Most likely a disk problem. That wouldn't be mets. I hope it all turns out OK!
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T&C, can you call your onc's office and ask them to clarify what "inflammed soft tissue" means or could be? One thing that comes to mind would be something like an enlarged lymph node in that area; but that's just a wild guess. I would definitely call and see if a PA or nurse or someone could help you understand the report.
momsurvivor, if it eases your mind any, I've never heard of bone mets being found as the result of numbness in a foot. Even if the numbness is due to something going on in your back, that doesn't necessarily mean it's bc, since back issues are extremely common and can be the result of arthritis or lifting heavy objects or poor posture, or any number of other things. I know it's hard not to worry, but as you said, the chances of being linked to your bc seem pretty low.
(((Hugs))) to you both, and be sure to let us know what you find out. Deanna
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I'm seeing PS Thursday so he can compare my scans and will have lots of questions. My BS is out on maternity leave and I'm so upset, I love her. But, I think that I'm gonna go to another BS for a 2nd opinion on all of this. I've been dealing with these issues for months now and I just get seem to get any resolution.
MO said that she had no idea what the soft tissue inflammation is. It's very upsetting to have your doctor say this to you...and then say that cancer can't be ruled out.
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T&G, it seems a bit strange that your MO doesn't understand your scan report, nor has she contacted the radiologist to have it clarified. I don't know where Royse City is, but it sounds like a second opinion would be a really good idea, and if you're anywhere near one of the NCI-designated cancer centers, that might be your best choice -- maybe before letting your existing docs schedule you for a biopsy. Here's a list of the ones in TX: http://cancercenters.cancer.gov/cancer_centers/ma...
If you're not close to one of these, you could call the closest one and see if they can recommend someone in your area. Or, you could start a new topic, asking for MO & BS recommendations in whatever large city you're closest to. Just some thoughts...
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I'm about 30 miles east of Dallas. I feel like it is strange too and it is very upsetting. I'm gonna look at that link, thanks. and yes, I'm not being biopsied until i get 2nd opinion.0
