If you are not Stage IV but have questions, you may post here
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Questions for triple negatives who experienced a local recurrence after initial diagnosis.
1. How long was the time between initial diagnosis and local recurrence? 2 years
2. What was your tx after initial diagnosis? Lumpectomy, chemo (FEC, Taxotere) and 30 rads
3. What was your tx after local recurrence? MX, Xeloda
4. Did you go on to to have another local recurrence? If so, what was the time span between the two? Yes, soft tissue under collarbone, 9 months
5. Did you go on to develop mets after local recurrence? If so, what was time span? not yet......0 -
It'll be a month tomorrow since my mom started her turn on the "is it mets?" rollercoaster and we still don't really know what's happening. I know some of you ladies have been following along with my posts and a couple have messaged me about her situation so here's what happened.
- Extremely painful shoulder and swollen clavicle - the size of a tennis ball with extra swelling around it.
- Emergency dept. xrays and bloodwork all clear, but doctor was convinced the swollen clavicle must be a tumor because of my mom's history of cancer so she ordered a CT scan the next day. Scan came back showing 3 lytic lesions (clavicle head, sacrum, illiac bone) and a couple other things that apparantly are of no concern even though the ER doctor told us with absolute certainty that my mom is "full of cancer" and that it can't be anything else causing those lesions.
- Onc examines her the following week and is perplexed by the swelling and the fact that she had this same thing--though not as severe--happen a few months earlier and resolve itself. Also surprised by her clear xray and blood work.
- Ultrasound done on the swollen clavicle and surrounding area - ends up showing nothing not even the soft tissue denisty originally reported in CT scan.
- Had bone scan done, not sure about the specifics of the results yet but onc says his concern is only the 3 lytic lesions so I am guessing they showed up on the bone scan.
- Biopsy is done on a slightly swollen supraclavicular lymph node on the opposite side of her swelling which also happens to be the side of her original breast cancer 11 years ago. Results found nothing wrong.
So the onc called her last night to let her know that she will be going for a bone biopsy to try to figure out the cause of those 3 lytic lesions. He is not concerned by anything else on that original CT scan (3mmx6mm lung nodule and sclerotic lesion in pelvis area).
I think it's good news that the lymph node was clear and that whatever is going on in the clavicle bone hasn't affected the soft tissue like they originally suspected,right? I just thought that between the CT, Xray and bone scan that they would have a better idea as to whether or not those lytic lesions are malignant especially since I know that many of the ladies here had their bone mets diagnosed with only scans and not a biopsy.
This is nuts!
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Oh my goodness Canadagirl, what a roller coaster ride!! BC is sometimes so sneaky its very hard to actually pin it down but it sounds like your moms onc is following through by ordering the bone biopsy. I'm rather surprised that it wasn't ordered earlier but at least it sounds like you will all get some answers soon. Here's hoping its a good news thing.
Love n hugs. Chrissy
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Thanks Chrissy! I am a little hopeful based on the onc not just calling it mets based on the CT and bone scan since so many women here seem to have had their mets diagnosed without a bone biopsy and only based on their scan findings. I had asked the tech on the day of the bone scan whether or not they could tell the difference between bone mets and something like arthritis or degenerative disease and she said that most of the time the difference is easy to see, but that in some cases they can look similar so they compare them to other images, like a CT or MRI. When I asked about biopsy, she said that if they aren't sure after comparing scans, which doesn't happen often, then they would go with a biopsy. Fingers crossed!
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CanadaGirl, I'm hoping like mad that its something else.
Love n hugs. Chrissy
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Hi Canadagirl,
It does sound more hopeful doesn't it? It's not obvious and that is good I think.
I am one of those that the CT, MRI, Bone scan didn't show up the spot that was concerning as a met. All my scans were read by a number of docs, trying to get a definite answer. In fact, the bone scan showed a very clear picture of the vertebrae but the doc said it wasn't showing up enough as what they call a "hot spot" and they were pretty sure it wasn't cancer. I was so very happy that day. But in order to be sure he ordered a bone biopsy. That took a couple of weeks to do and get the results back. It was cancer from that so yes sometimes it takes that much but there is sort of list of tests they use and most of the time they get the answers without having to run though the whole lot.
It does take time and there is noting worse that expecting to get real answers and coming away with more questions. It just sucks but it is the way it is.
Hold onto the fact that it is only those three small spots that are even concerning them. And even the fact that they can't tell from the other scans. It's NOT obvious so to me that would mean it is not big n nasty but small and quite likely not cancer.
Hope you get the biopsy soon. It's quite easy to do but you need to make sure she gets good relaxants and anesthetic around the site. Can be achy a couple of days at the very most but nothing major.
So sorry it is taking so long but look on it as a positive. Cancer is a sneaky beast but your out hunting and it won't get away.
Moira
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Thank you for sharing your experience and for the well wishes. I was definitely relieved to see that the lung nodule doesn't seem to be of concern to him since that scared us the most! Now if only we could get told that the 3 lytic lesions are the result of arthritis and nothing more. One can wish I suppose!
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Hey everyone. I've spent the last few hours reading through this thread. It makes me angry that BC can cause so much anxiety by being such a sneaky b***ard.
Every now and then I have moments when I become preoccupied with stats, prognosis and my chances of developing mets. I'm in the middle of chemo (had 2 x TC so far) and tolerating it reasonably well. I have a couple of questions which some of you might be able to answer.
How does PR status affect treatment/prognosis? My understanding is that tamoxifen and AIs block the effects of estrogen, so what difference does being PR-/+ make and is being PR- a bad thing?
My final pathology said there was 'extensive vascular invasion' which has been freaking me out ever since i read it and I keep envisaging all those pesky cells escaping into my blood stream. My onc told me that the presence of vascular invasion isn't an 'independent prognostic factor' and didn't seem too concerned. Do you know if it is a common characteristic and from what you have read, shoud I be particularly worried? Is it better to have that than positive nodes? Does the invasion mean that the cancer DID enter the blood stream or just that it had the potential to? I realise that the aim of the chemo is to kill all of these cells but I'd like to think the fewer the better.
I know I need to ask my onc all these questions but I feel stupid for obsessing so much on the same details.
Also, how come BC is impossible to cure once it has settled outside the breast? If it is the same cancer, why does the location change how it reacts to treatment?
Hugs to each and every one of you.0 -
Michelle, I don't know about most of what you've asked, but I do know, there is no cure for breast cancer. It can't be "cured" while still in the breast. It can be removed before it spreads. I guess you could call that cured, but it is literally removed.
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Michelle I think we all obsess over BC and the potential it has to spread. Because it is such a sneaky disease it is possible for it to travel both by blood and just through the lymphatic system.........it only takes one cell to begin to grow outside the breast to take you to stage IV but that is the reason we do so much treatment to begin with its to mop up those stray cells before they cause a problem.
PR works the same way as ER does when it comes to being + or - and wether the AI's are useful or not.
Hope this is helpful.
Love n hugs. Chrissy0 -
Shore, I would not accept that so easy if it were me. They can biopsy bone. I have had 5 bone biopsies. It could be that if they give you MRIs every 6 mo or so that they could watch it but I woudnt like that. If it starts to grown in 6 mo and they decide its time to worry...then you have lost 6 mo that you coulda been fighting it. For them to say that its unlikely to be cancer since you are early stage, is just lame. Dont mean to scare you..I just want you to know. Hugs, Mazy
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Mazy, Thanks for your reply. I need a break from worry over the holidays, but I do plan to follow-up with my MO at my appoinment next month.
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I realize this may be a dumb question, but after seeing a diagram in a medical journal I have to ask. Can breast cancer metastasize to the opposite side of where it originated? The diagram showed the path of breast cancer mets and it was all up and down one side. So if you had breast cancer on the left, is it not possible for the same cancer to spread to bones, etc. on the opposite side or would that indicate a whole new cancer? The report and diagram suggested that it follows a pattern along the same side of the body when it is cells that have spread from the original cancer.
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Canadagirl not a silly question at all. My original dx was on the right and the mets to bone were found on the left side. I don't think there is a pattern to where it will appear, I think it is just where those pesky little cells decide to grow........
Love n hugs. Chrissy0 -
That's what I thought. The diagram threw me off and made me wonder if what I had been reading all along was wrong! Thanks for chiming in
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Canadagirl, you can definitely get mets to the opposite breast and opposite side, and you can also get a NEW cancer in the opposite breast. I am not sure how they decide it is a new one vs. a met, but I do know they repeat all the tests for hormone or herceptin receptors, and these days they are beginning to do more genetic testing to see if the tumors have similar or different genetic mutations. Also, remember that diagrams are usually simplified in order to communicate general principles, and are not all-inclusive or all-exclusive, just simply what is most common.
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Hi,
I'm looking to work while on Xeloda/Tykerb cocktail, what are the side effects and am I being realistic?0 -
Hi...I was told that the distinct pattern that breast cancer has is in the lymph nodes. For example, the breast cancer is on the right side with lymph involvement, the nodes under the arm on that side would be affected first, then it would affect the right collarbone area nodes and then right neck area, etc. That's what I understood anyway.
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Just weighing in on the mets topic. Unfortunately cancer has its own regime which is not always predictable. I had cancer in my left breast with numerous nodes affected on the same side. However, the cancer bypassed the bones completely and went straight to the liver. I am still doing well with tx and have a good QOL - stable for 6 mos now!
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Hello everyone,
I have a friend that was diagnosised with stage 3 one year after I was diagnosised stage 0. 2 weeks ago we learned she has mets to the brain. 2 leisions 3.4 cm and 1.7 cm right together. She is now getting all over brain radiation for 15 treatments then after 4 weeks repeat MRI. Then the drs will see if they can use a gamma knife. I am being there for her all I can. She has always had faith in God but now it's a whole different level. I know this is her coping. I worry that she is not going to make it. I worry about all the things that need to be addressed and taken care of if she were no longer here. I feel guilty thinking this way but staying up nights being worried. She has been divorced for 15 years. Has an 18 year old son. Son father not even working, so not much help. Please please Sisters give me direction. With all love.
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Hi identtwins I don't have brain mets but there are a number of brain mets threads within BCO. I'm thinking that you may get a better insight to be able to help your friend if you read those threads. If you have further questions please post them here.
Wishing both you and your friend the best.
Love n hugs. Chrissy.0 -
Keepingfaith, I'm sorry I haven't been on that combo so don't know what to expect regarding SE's. There is a thread on Xeloda you may find some answers there. Good luck with your job hunting and I hope you are well enough to find one.
Nanka, it is unfortunate but BC does not seem to follow any particular pattern when one moves to stage IV. It would be nice to be able to predict its movements but our reality says that it goes where it wants with no rhyme or reason.
Love n hugs. Chrissy.0 -
I think that this thread was very much needed and thanks to ChrissyB for starting this.
I have a question also. My girlfriend was d/x with bc last year and went through chemo and rads. She tested positive for the BRCA 2 gene and has since had her ovaries removed. She was in bed last week a head ache and vomiting. Her husband drove her to the hospital and they did a scan and found three tumors in her brain 2 of which are 6cms. They cannot do surgery because they are embedded too deep. She started WBR yesterday for 10 treatments. I'm not familiar as to what will happen after the WBR. Will they put her back on chemo? If so, what type? She is on tamoxifin right now but obviously it is not working.
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Hi Kim I'm so sorry to hear about your friend. After WBR the docs may try a chemo but their choice is limited due to the fact that there are not a lot of chemos that will cross the brain/blood barrier. Having said that, there are a number of brain metster girls doing quite well but I'm not sure exactly which chemos are working for them.
Hoping your friend does well.
Love n hugs. Chrissy0 -
Hi Chrissy,
Thanks for your feedback. I am hoping that it's not mets and that xeloda/tykerb won't be required.
If it is, I'd like to continue working in my job as an it systems analyst.
Wishing everyone a joyful and peaceful Christmas0 -
Hi ladies
Just a question, i've just finished 3 x Taxotere and have 3 x CMF to start Jan 2nd...just wondering this last couple of days I'm experiencing 'flu' like symptoms which I know can be from the Tax however just a little concerned as I have lower to mid back pain with a cough, sometimes a tickle sort of cough and other times a wet cough (phlemy sorry, TMI) lol.....just wondering if this is something I should be concerned about or wait it out another week to see my onc to discuss as I too have a 1mm nodule on my lung that I was told is 'scarred tissue' from previous chemo/ rads i had 16 years ago!!
Any info on lung mets etc / symptoms etc would be greatly appreciated .
Thanks
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It sounds like regular old side effects from the Taxotere, which can give you unexpected joint/back pain and our favorite, white bronchial gunk.
As always, report it to your team though. As a rule of thumb, if something persists for more than 2 weeks, it requires attention.
If you are having shortness of breath, or feeling "spinny" when walking upstairs (or similar exertion), give your docs a call. That sort of stuff does better with immediate attention.
Hope you feel better soon!
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Good news on the bone scan...no signs of metastatic disease, only bone islands.
Will be having a biopsy on Jan 17th of the enlarged lymph nodes in the chest, the pulmonary doc is not too concerned but biopsy is needed to confirm sarcoid and rule out other stuff... Pulmonary doc thinks I have sleep apnea as well, wants a sleep study. I asked if he he knew the wining lotto #'s so I can pay for all this stuff! Really liked this doc and am pleased to have him on my team. Onc wants to wait for biopsy results before we revist the hormone therapy options...Thank you for all your support!
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O2behealthy that is wonderful news indeed!!!!!! Keeping my fingers crossed that the biopsy come back the same way!
Love n hugs. Chrissy0 -
Found new lump under ALND arm while doing stretches last week. Thought "my imagination." Finally called clinic yesterday, they will see me in the morning. Knowing how it usually goes, I expect to be there the better part of the day - am guessing they will try to work me in for ultrasound and possibly punch biopsy - I hope they do as my anxiety is sky-high. Last recurrence was just a little skin button that BS took out with punch biopsy, then followed up with wide excision, which had clear margins. Then I had a little nodule that she took out about 4 weeks ago that was a suture granuloma. This is different. It feels large. I don't want it to be different - I want it to be nothing to worry about. My mind wants to wander into fear, so I am going out for lunch with a friend today and also doing some watercolors and will watch comedies on TV with DH when he gets home tonight. Thanks for letting me vent my fear here. Now I will face the day with a smile and kind words on my lips as best I can for the rest of the day.
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