If you are not Stage IV but have questions, you may post here
Comments
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Ok- I'm probably crazy but part of me is absolutely terrified that I am going to discover metastatic bc. I had dcis in my right breast, had bmx no node involvement, no micro invasion. In January at reconstruction time, had my remaking breast lifted and reduced to match the reconstructed one.thankfully,the pathology of the left breast showed nothing abnormal. The logical side of me knows what 'in situ' means etc etc but I can't help being and scared that I am going to discover more cancer. Did anyone who had pure dcis end up being stage 4?
I sincerely hope that I am not offending anyone and I so admire ALL of the ladies here for their incredible compassion, patience and tolerance.0 -
reindeer - I am not sure how common it is for no positive nodes to progress to mets, but it does happen.
However, the nodule on the lung that is seen is not necessarily mets. It could be scar tissue etc. I hope that you do find this is the case once your dr reviews. Keep us posted.
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Raindeer: My first diagnose was node neg in last April. Now after bmx and diep, I had cancer in my axillary node. Do u have any lump in your lymph node, that you can feel? I have no idea about how can SN neg but positive axillary node. But that happened to me, My surgeon said that's why SN isn't perfect. Ok, I'm the 5% imperfect. I don't know I have mets or how many nodes involved yet. But I am crossing my fingers now. I will do bone scan tomorrow and CT Friday.
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From what I understand, cancer cells can travel through blood vessels or lymph vessels. If they go by blood, they would skip the lymph system completely.
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Merlcat- they say that woman that battle BC come out stronger mind and body..... however they also say that after the battle is won often woman are left to battle yet again. PSD. After reading so many victorious warrior's post! I've found that in time most have found a way to live with cancer being part of their lives. Talking about fear is helpful and this is the perfect place to come and talk or type!
Barsco- Thank you for taking time to reply, I admire you for where you in your journey and that here you are reaching out to someone else. Your smile is beautiful!
jjl- holy crap! thank you for the post can't imagine being where you are. Re-occ after 1 year. Forget my worries! How are you doing?!!! As for my nodes they came out neg. I don't have a lump. Well no thats not true my nodes are swollen in the my non-cancer side i chose a double BMX with TE's. My left side the nodes where removed or at least the 4 in my armpit. they all came back as neg. I am worried about the Nodules they found on my lungs but after reading more (still learning how to read post and move around in the flow if this website) i'am seeing that many woman get lung test and get pos hits on test but it doesn't mean its indicative to mets.
Thank you again everyone for the replies. Love the feelings and caring that run on this site!
-Rain
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Merlcat,
The shock and trauma of any serious dx like this can take time to work though.
I have no idea if dcis can do to stage 4 but in a way that isn't what the problem is. You are just working though the fact that something damn scary has just happened to you and you don't know if it's all gone.
Something that truthfully no-one can tell you 100%. Life will throw curveballs when you lest expect them.
It's not a trivial matter and I don't mean that you shouldn't worry but try to remember you are fine today and living today, that in the total essence of life is all any of us have. Just takes some getting our head around when we have been happily wondering our way through life and then cancer or something else slaps us in the face with a wet fish and wakes us up to the reality of life.
Give yourself some time and if need be get some help with working it through and then get on with the business of living a great life. That is the best revenge for cancer.
Moira
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Merlcat, I agree with Moira. You had a cancer diagnosis. That's totally frightening in an of itself. And you've had a couple of tough surgeries.
The fear should fade over time. I had a full years worth of treatment (Stage 3), and by four years later I'd totally forgotten to worry about any kind of recurrence. The Stage IV diagnosis came as a shock. I wouldn't have wanted to worry the entire time, but it takes time to fade in your memory.
Deep breath, meditation, maybe talk to a counselor about your fears?
Really, I repeat, it will get better. Take it easy on yourself.
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Rain, thanks, I'm doing well.. I dont feel sick and my energy level is pretty good too. even after I already confirmed I had mets in my axillary lymph node. I enjoy my life every moment.. my case is rare and complicate. my onco and surgeon both want present my case to 2 different tumor board.
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pajim -- I considered cording (aka Axillary Web Syndrome), but there are no visible or palpable cords, and the lymphedema specialist said that cording usually happens within the first six months of a mastectomy; I'm 3.5 years out. My left arm, the painful one, is not swollen in any measurable way. But we tried a sleeve anyway. A week of compression and I was in more pain. Hence, the cycle continues.
Bidding all strength, joy, love and the best of health!
Anne Marie
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Meet with my Oncologist, she pushed out chemo till 1st week in June, after she reviewed the radiologist report from the Lung CatScan. She said she was going to go to the breast cancer board on the 23rd of this month. Her words were its a slim chance but it's a possibility. The nodulars (2 small 3mm) are too small to Biopsy. She will review my case with the board and then go from there.
Her words were no chemo no nothing if it's mets.
The 23rd seems forever away.
What the heck are the chances of this happening? 1.79cm er pr+ her2- nodes clear grade 3.
Dr's reply was 10-20%. I am an insurance agent I don't like those odds.0 -
Reindeer I'm sorry to hear this but I'm more concerned with what your onc said, ' no chemo no nothing if its mets'. Are you saying that she is saying there is no treatment for you? If this is right, I would be seeing someone else very quickly as there are loads of treatments still available for you, it just means that this one is not working for you.
Good luck with it all.
Love n hugs. Chrissy0 -
I agree. "No nothing" is not acceptable! A new onc asap is what I would be looking for. There are many many treatments for mets.
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Rain - the "no nothing" comment also has me concerned. As the others have said there are many many options out there. I would be running to another dr if your current one is not looking at those other tx.
Good luck - keep us posted.
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Rain, my onco told me if They find any mets in my scan, she will change the chemo meds and dose. Never say no treatment. I think your onco might meant no surgery. that I can understand. we had similar tumor, 0/4 nodes, gr3, er+pr+ her2-. My tumor was 1.9cm. Now I have cancer in lymph node. I had 4xTC, if I still have treatment, why u can't? I think u need find another MO too, at least get second opinion.
Try to stay positive, I know it's hard. I'm in the same boat. But worry can't help anything. Only make me panic... Is your cough getting better? Thinking about u.1 -
I think u should talk to your Onco to get more different scan during this waiting period, and Ca15-3 test. if that's possible. These will make a bit clear of the picture for your treatment too. I though they always do ultrasound after they find some nodule.
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Rain, what makes your onc to suspect that these nodules are "mets" in the 1st place?
I also have a couple of tiny nodules (2mm, 4 mm and a new one 5 mm) that cannot be dx from the scan or biopsied due to size. And although my ct scan report (from Dec, and recent from April) says: "no evidence of metastatic disease", I realize that they cannot know for sure. I finished chemo in Nov and rads in Jan;
I was adviced to "watch it" for a couple of years, but the anxiety would be to much to handle.
So I chose much more drastic approach. I'm having a lung surgery in less then 2 weeks to get these nodules out and run a full pathology on them. And whatever they are - there are still options to either treat it.
There is a girl on BCO that had some nodules at dx and they didnt know whether they were mets or inflamatory. Her onc proceeded with chemo and she was suppose to have scan in April. I contacted her to see how she did and her scan came back clear! Her dr said they will never know what it really was.
So, please, try not to worry. It is what it is (which could be just a scar tissue, fungi and thousand of other reasons to have nodules), get a 2nd and maybe even 3 rd opinion, before you agree with one doctor's recommendation.
I have the feeling that your onc is not convinced that those are mets and by saying to do nothing - means to "scan regularly and watch for any changes in size", which could indicate whether they are b9 or malignant. (They usually "watch" for a couple of years and if the nodules remain the same - they pronounce them B9).
I wasn't comfortable with this protocol, and although my didn't grow over 4 months (malignant nodules usually double in size in 1-6 months), I chose to have a surgery and know for sure.
And, please, get another opinion before you make any decision.
Maggs0 -
hello. Thank you ladies for your passionate replies! Very Much. I should of clarified my Dr's words. She said that IF its Mets the chemo plan that she had in mind is off the table and treatment course will change. Not no treatment. She was implying no treatment till they can further evaluate.
She has opted to hold off on my originally planned Chemo Start Date which was the 16th until she can bring my scans to the Breast Cancer Board/Panel that meets on the 23rd. She has not said it's mets. She has said that she and the radiologist are "concerned" about what they see on the images as was the radiologist in CT that did my scan as I was visiting friends and landed in the ER with possible blood clot to my leg). So thats three Dr's so far that were "concerned"
My Dr is reaching out to the panel for additional review, which I am grateful for.
Sorry I didn't mean for my post to sound so daunting. I am worried and hate the idea of waiting two more weeks for what the panel sees, but really its a good idea to make sure all avenues have been looked at to make sure I am getting the correct kind of chemo.
Thank you for your fierce and protective replies! I so was getting a second opinion on my own regardless when I was told the news about the scan.
One thing I am learning quickly is you've got to take control of your treatment.
Thank you,
L
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Rain, that is a truly great thing that your doctors are actually concerned and want to get to the bottom of it. I'm sure it's nothing malignant, but at least they are working together to eliminate such possibility.
It is worth waiting those couple of weeks and get the proper chemo that will be suitable for your particular case.
Wishing you all the best!
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Rain, your tumor is gone already, so wait a couple weeks won't be a big deal. I think u will be fine.
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Thank you Raindeer for clarifying what your doc said........that is much better and yes, she is doing the best for you. Waiting a couple of weeks is not going to prove a problem and much better to be doing treatment that is going to cover what you need.
Love n hugs. Chrissy0 -
Rain - glad you clarified things for us. As you can tell we are a protective bunch and really do care about our sisters here. Sounds like your onc is on track with ensuring that you do get the appropriate tx . As Chrissy said, a couple of weeks wait is not going to prove a problem.
Hang in there and keep us posted.
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After radiation therapy can herceptin be used to treat brain mets? I am not sure where to post this question really...
I thought it wasn't the case, since i thought herceptin didn't work for the brain, but following an appointment with her consultant my mother believes the herceptin is to be continued to stop the brain met from growing. Can this be the case? I thought it didn't cross in to the brain. Could she have misunderstood the doctor or can herceptin work for brain mets?
She had radiotherapy followed by several rounds of chemo and herceptin for mets in the brain (2cm), bone, liver and lungs.0 -
Hi Papillon, Herceptin is give for Her2+ cancer and as your mom is stage IV it will be given automatically. I don't think it crosses the blood/brain barrier but it will help with her other mets. Hope this has helped a little.
Love n hugs. Chrissy0 -
Ah thanks for taking the time to reply. That's what I thought. She seemed to understand the brain met wouldn't grow as long as she as herceptin. She said the doctor explained it coats the tumour and stops growth. I don't want to ruin her hope or appear as a know it all...maybe I will ak my father to get a nurse to explain things. Or perhaps I should leave well alone as she seemed happy enough..
The brain tumour didn't shrink, the doctor said it wouldn't....what now for that met I wonder if it isn't the herceptin controlling it (as mum said the cot or said)... So confused....0 -
Papillon, Tykerb does cross the BB barrier and is also for Her2+. Maybe she could ask the oncologist about Tykerb. There are also some who have had hercepton given directly into the spinal fluid, I don't know if that allows it to reach the brain Metz, worth a question again to the oncologist.
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She has it directly in to a tube which they put in her chest, so to one of the main arteries I guess. The tube stays there.
Thanks to you both for your reply...
I feel bad for not trusting the doc....no doubt he does know what he is doing.... Am not sure if I should ask mum to recheck her info since she seemed less worried after having it explained.
Thanks ladies.0 -
Papillon, Herceptin helps control the aggressiveness of the Her2+ cancer supposedly systemically but I do know that there are very few chemos that cross that barrier. If your moms tumor did not shrink any with the rads but is not growing, maybe the rads have worked by slowing its growth.
I know this is very confusing for you as I'm sure it is for your mom...........it does sound like your mom is in a good place mentally so perhaps it would be good to leave well enough alone at this point.
Love n hugs to you and your mom. Chrissy0 -
Exactly Chrissy. I don't want to upset anyone. I just have a scientific mind and like to understand. No doubt the results will be the same whatever.
Thanks so much.
Hugs to you x0 -
Papillon, you are welcome to post in this thread anytime you need to.
Thanks for the hugs. Chrissy0 -
I had Taxol #11 today. I was told, I need to have a full body bone scan and MRI before I can move on to rads.
I had those same tests before starting treatment. There seemed to be more activity in my left shoulder than other places that I have degenerative joint or arthritis. So I had an MRI that was supposed to last 25 minutes. After 30 minutes they pulled me out and said they needed to inject dye and do another 30 minutes. My back hurt so badly from that hard table, I told hem I just couldn't do it. I limped out of there like a 90 year old woman.
Because I couldn't complete the MRI, the radiologist wouldn't commit to it being arthritis. He said, it could be mets, but he couldn't say either way. So, now I have to go through all of that again.
I've had bursitis in that shoulder in the past, so I'm sure that's all it is.
Paula
FIGHT LIKE A WARRIOR!!!
Dx 7/27/2012, IDC, 5cm, Stage IIIc, Grade 1, 13/16 nodes, ER+/PR+, HER2-
Surgery 10/22/2012 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)
Chemotherapy 12/07/2012 Adriamycin, Cytoxan, Taxol0
