If you are not Stage IV but have questions, you may post here
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Hello all,
I am back now from the docs who basically said we are talking about you with all the docs on Monday so stay tuned. Several medical tests today though including a biopsy of supraclavicular nodes. Thanks for all you support.
I am told that I have a regional spread not a local recurrence. It is the same type as last time as it is er/pr + and her2-. It is different in that the grade is still 3 but now 50% rather than 15% which I'm told is good in terms of response of the cancer to chemo. I have supraclavicular nodes which though the surgeon seems like he is trying to hide it seems to make him very upset. He asked if I had any symptoms / feeling poorly.... no in fact I am finally feeling better after surgery, chemo, and rads last year. I am not sure but I beleive that there may be 5 areas with the largest being 2.5 x 2.3 cm. There is also skin thickening near the old surgical sight which with the clear mri the doctors think is a post-surgical reaction. An ocotype and other dna tests are being done and will bring more info. Doc said in the past any supraclavicular was stage 4 but that is no longer the case.
So, as I understand it, not good but the prognosis is not clear. Treatment of AC then T and continuous checking to make sure that the cancer is responding to the chemo. Scared Sh#tless of course especially because it seems that the chemo not resection of lymphnodes and a bmx are the preferred treatment. Also, because doc doesn't recommend removing nodes above the clavicle as the "morbidity" isn't great. This probably requires a thoracic surgeon.
Thank you for everything.
V
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thanks Chrissy, yes, I said to my oncologist, so when will I know I'm actually cured and he said, if you live to be 80 and die after geting hit by a bus instead of cancer then we'll know you were probably cured. I see the oncologist today. I'm dizzy, peeing around 6-7L a day at present from the diabetes insipidus and have a choking cough when I have a big belly laugh but still believe I do not have cancer back until the oncologist definitively says so and even then I want proof its not sarcoidosis. I know this is just my way of dealing with info I won't like but it makes me feel my days are 'normal' until I have to take on board a change of status... at present I'm a person having brain injury realted issues and a question mark over lung behaviour (sounds quite Mr Spock, but I'm autistic ;-) but I have appreciated the warmth and welcome from you folks so at least if I end up one of your gang I'll feel a bit more familiar with some voices byond the ominous dx of 'mets'.
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Hello, I have terrible pain in my neck I had an ex-ray and my GP said it was arthritis.
Would an ex-ray show cancer? Waiting for foot and knee scan as well.
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Donna, here's hoping there is no need for you to be joining our ranks but I know you will be welcomed if you do.
Ali, it is possible for an X-ray to show cancer of the bone so I would breathe a sigh of relieve if your doc is say arthritis. I know arthritis can be very painful so here's hoping your doc has given you some ways to help you deal with that pain. Good luck on your scan.
Love n hugs to you both. Chrissy0 -
I have a question ? I read the stories of all you super brave women and its amazing
but how is it some of you had stage 0 or 1 and end up with 4 ? Nothing is working ? So Discouraging 
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Idontlikethis welcome. It is indeed unfortunate that a few of the stage 0 and 1 do end up stage IV but its not the most usual. BC is such a complicated disease that even the researchers have problems answering those sort of questions. In my own case, I was originally dx'd stage II grade 2 and when the cancer appeared in my bones my specialist just kept saying that I had defied all the odd and it should not have happened..........nice to know but no explanaition.
The more I read the more I think that ending up stage IV is indeed a combination of circumstances and your response to original treatment. My SIL was dx'd with BC 35 years ago, she had a double radical mastectomy with no other treatment........her staging was stage I. She is still cancer free and living strong so it is possible. I think you would find if you looked up all statistical information that those who are early stages are the exception rather than the rule and those who post here as stage IV are the exceptions........all others are out there living life to the full.
Love n hugs. Chrissy0 -
CT scan as a follow-up to a CT/PET in January. In January had 2 retrocaval nodes that were enlarged. This time they were unchanged. In January, only a mild degree of dependent atelectasis in lower lobes. This time "8mm left upper lobe pulmonary nodule is present." No additional nodules and no pleural effusion.
What do you guys think? Should I push to have this re-done beofre 4-6 months which is what the doctor is advising?
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Wrsmith,
What is a retroclaval node? From my experienc eof startign at stage 0 and then going to 1 and then to 11a and now to 111(whatever! as I call it), test early and often.
V
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Retrocaval nodes: a group of lymph nodes of the right lumbar group situated behind the inferior vena cava. I had two that were 1cm each but remain unchanged in the 6 months since last scan. The nodule is new.
Thanks for the advice.
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Wrsmith I would be pushing for the four month mark not the six...........sooner,if you are watching something, is always better.
Love n hugs. Chrissy0 -
I'm not sure if this has been asked before and apologies if it has - my mother was recently diagnosed with breast cancer, and when doing her staging tests her abdominal CT scans showed activity that was 'compatible with metastasis' (as quoted on the report) on her hips
The doctors recommended doing chemo and radiotherapy right after her breast mastectomy on her hip, without doing any further biopsies beforehand.
They are saying that surgery will be needed to do further testing because the location is too deep for a needle. Has anyone had a similar situation like this - going straight into treatment without confirming that it is indeed bone mets ? I know the doctors have a lot of experience and can probably tell what is what by looking at the scans, but there's just a small part of me hoping 'what if that part is actually benign?', and wondering exactly why they mean when they say 'compatible' - does that mean maybe or definite?
Sorry for all the questions, still taking baby steps in learning everything
Thanks & many hugs0 -
Wraith I have a lung nodule that they are following. Apparently they are quite common as a result of inflammation or infection. If you search the boards you will see that many women have them. Normal protocol is to follow them every 6 months for 2 years. Yours is small and there is only one like mine so I have been told that is a good sign. Good luck.
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Hi Sago, it's quite common for the docs to assume mets as quite often what they are looking at on scans can be nothing else in that place. By doing the suggested rads after her mastectomy they will be hoping to knock back the cancer in her pelvis as rads for bone mets are used not only to relieve pain but it can kill the cancer in that area.
I understand you not wanting to think that your mom has a met but the good thing is it has been found now. A person can live many years with bone mets and lead a pretty normal life.
Love n hugs. Chrissy0 -
Namaste did you have bronchitis or pnuemonia recently . A cold in past year? It can be that. Scar tissue.
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netty46, I cannot remember the last time I had a cold. It's been at least two-three years and bronchitis....probably two years before that. No pnuemonia is more than 10 years. Actually other than cancer I'm a pretty healthy gal.
No idea about the nodule. Wait and see. Yah! What fun!
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Yes I had Pnuemonia 4 yrs ago and thats why the nodule is there. They say its scar tissue . It happen to my girlfriend also. Here's hoping thats all it is.
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Hi ladies...... Need some advice. I have been out of treatment for about 2.5 years, still on tamoxifen. In the middle of a big move to a different climate. I have had some recent shortness of breath- in early June, very severe, chest x-ray was clear, now, just what feels like a scratchy throat and a little chest tightness here and there, only after the first few days. About to start Arimidex next week, have an appt with the new oncologist in two weeks. I tend to follow the two week rule- and I exercise a lot and have not struggled during that- seems to open my lungs up. But I am not sure what to do..... In between docs and thinking I should just wait the two weeks and see if it clears. Any idea what lung mets symptoms are like?
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Hi Misswim, like all mets symptoms they can present for some and not others. I have been told by my doc that the possible first symptom is usually shortness of breath even when at rest and not under stress and this is due in part to fluid that can build up in the lung or the chest cavity.
What you are describing sounds more like an allergy reaction to airborne allergens as in dust and flora pollens. Providing you are not in extremeous I would wait the two weeks until you have your appointment but should your breathing become laboured or you feel that you cannot draw enough air I would at that time present to an ER ASAP.
Hoping you have nothing to worry about.
Love n hugs. Chrissy0 -
Thanks Chrissy! Its hard being between docs. I did call the onc I am transferring from, she told me the same thing.She did recommend that if my SOB gets worse or it is impeding my exercise (which it is not, yet), then to call her and she'll arrange an x-ray. I think my anxiety makes it that much worse.
Do you think it would be out of line to ask for a little ativan to get me through this transition? I think some of the SOB is my head from all the stress!
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Misswim I think Ativan would be perfect to get you through..........we all need a little help every now and then. When you see your new onc mention the breathing and itchy throat, he/she may recommend an anti hystermine for you as well.
Love n hugs. Chrissy0 -
Hello Chrissy, Barsco and ladies
Here's an interesting interim result that I had never considered about the lump in my left eye socket: in brief, the ophthalmic surgeon says it could be a prolapse of the lacrimal gland.www.ncbi.nlm.nih.gov/pubmed/23...
In brief, that's a piece of the lacrimal gland is hanging down in a place where it shouldn't be.
Surgeon can't be sure. Took biopsy last week and says only results in two weeks will tell but he is not overly concerned. Fingers crossed!
Best wishes
Alice
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Yay Alice! Keeping everything crossed that the biopsy result confirm its the lacrimal gland and not anything else...........breathe girl and try to relax. I'm as excited as you are!.......lol
Love n hugs. Chrissy0 -
Alice - good news that the surgeon is not overly concerned. Hoping for nothing but a lacrimal gland taking a wander. Our bodies do some funny stuff huh? Keep us posted.
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Hi...I was hoping I could get some feedback on the results of a recent xray. In Sept. 2012, at age 32, I was dx'd with IDC, stage 1. Low onc score, no chemo needed. Shortly after my dx, during a baseline dexa prior to starting tamox, we discovered I also have osteoporosis. (Several years prior I had been dx'd with osteopenia, but now it has progressed to osteoporosis.) This past Friday I had an xray to check on a possible T12 compression fracture that was identified several months ago during an abdominal CT scan (unrelated; to check for a hernia). Friday's xray showed I do indeed have a fracture there as well as demineralization through the entire spine and (in the thoracic) mild degenerative disc disorder and exaggerated upper thoracic kyphosis. None of the blood tests my endocrinologist has ordered has found a reason for the early onset of my osteoporosis--vit D, thyroid, parathyroid, IGF, & cortisol have all come back normal. I can't help but wonder (worry?) that perhaps this isn't osteoporosis at all but bone mets. Since bone mets weakens bones, could a dexa, in theory, read in the osteoporotic range when the underlying cause is actually metes? No mention was made in the xray report of dark spots, etc. Would a routine xray show mets? I viewed my results this evening electronically (they are posted to a secure site online that I can log into & see them), but I haven't spoken with my MO or endocrinologist yet. Hoping to touch base with them or a nurse tomorrow during office hours to discuss the results, but I wanted to see if anyone here has some insight too. Thank you so much!
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Hi Adelaide. To my knowledge a DEXA only measures the density of bone for the ranges normal, osteopenic and osteoporosis.......it cannot determine mets. A X-ray can show problems but I'm not sure if it can differentiate between damage due to osteoporosis and mets. If your doc does not suggest a bone scan I would ask for one as that will either confirm mets or just damage.
Sorry I couldn't be much more help and good luck, hoping for you it is just osteoporosis.
Love n hugs. Chrissy0 -
Thank you so much for the response, Chrissy. I have already emailed my doctor and asked if a bone scan is warranted, so I'm glad to hear you confirm that is a good approach.
Thank you so much for setting up this thread and for taking time to field questions about mets, Chrissy. It is a very selfless thing that you do. Best to you!
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Hello Chrissy and Barsco
Thank you for your replies.
As Barsco says, aren't bodies funny things!
Never heard of a lacrimal gland that goes wandering before. How strange.
Just goes to show though, to paraphrase Chrissy, that just because we have these odd lumps and bumps it doesn't always mean it's cancer.
I'm keeping my fingers crossed and hope for good results for our worried sisters.
Love
Alice
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Chrissy & Barsco~~I just want to commend the two of you for your loving patience, and the way you always take time to answer questions for those of us who have concerns of progression.
I read every post on this thread, and you are both always so kind.
I was having some severe hip pain last year before starting chemo, so I mistakenly asked a question on the "stage IV only" thread. I got pms chewing me out for having the audacity to ask a question there. I really meant no disrespect, but had already been dx stage IIIc and had genuine concerns.
Thank you on behalf of all of us who have had or will have concerns.
You two ROCK!!!
Blessings
Paula0 -
Soteria - I too am very thankful that Chrissy started this thread. It is not only helpful to earlier stages, but also to me as a stage iv gal. I have learned a great deal from all of the questions asked and answered.
I really think that Chrissy has done an AWESOME job replying to all of the questions with her vast knowledge. My knowledge is limited at this point, but I can give encouragement, support and hugs galore to those in need.
After all - we are all here for one another through the good, the bad, and the ugly.
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Thank you ladies for your cudos I'm just glad that this thread helps.
Paula, I started this thread for the very reason you experienced. I understand that at every stage we all have fears and concerns of what may be but I also understand what a lot of the stage IV ladies are saying when they say they want privacy..........hence this thread.
Love n hugs to all of you. Chrissy0
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