If you are not Stage IV but have questions, you may post here
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No, mets don't necessarily cause pain. Eventually, they usually cause symptoms, in my case a pleural effusion. They probably are waiting to do a CT/PET scan until they are finished with your nodes. You don't necessarily have mets just because of the lymph node business and there is nothing you can do about it anyway. So try and have a great weekend, because worrying won't change anything.
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Scared, I also had extracapsular extension, but no additional positive nodes nor mets at the time. It's definitely an issue to be aware of, and it was one of the reasons rads was strongly recommended for me by UCLA even after an mx. Not sure if that would still be the recommended protocol today since my initial dx & tx was in 2008, but perhaps just something to keep in mind and ask about if it's not brought up.
As far as fearing you have mets now... I think the fact that your sentinel node was doing its job so well might actually be a sign against that having happened. That said, I did have a PET scan prior to starting chemo, and it was totally clear. I perhaps foolishly declined an aromotese inhibitor after chemo, and I'm sure that was far more a factor in my situation than the positive node with extracapsular extension.
It's good that you're aware of the extracapsular extension, but don't let it freak you out. Just be sure your medical team gives you guidance that takes it into account.
(((Hugs))) Deanna
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Thanks for your very kind replies! I agree with BosumBlues....your advice and support is so much appreciated!
It's such a hard place to be in right now. Being full of fear. Your information and success stories help us get thru this - by giving us hope and letting us have a safe place to express our fears....
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Scared -
I had extensive lymph node involvement and mets to the liver when first diagnosed, de novo, with stage IV cancer in December. My symptoms were that I had welts all over my body and I started having terrible reactions to things, like sunscreen, that had never been a problem before. Nobody diagnosed this set of symptoms as cancer. I had no pain.
Hang in there. Going through the diagnostics and trying to understand what is and is not going on is hell. No matter the stage. It just is.
>Z<
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Hi ladies.
I have a question. Since my treatment with Taxol my legs have had crazy weird symptoms. I had months of tingling and crawling sensations and then almost a numb feeling in my upper thighs. Now for the past 2 months I have been experiencing pain vs the tingling in both femurs and up into my right hip and down into my tail bone. It hurts at night, I wake up in painand during the day it feels like I have worked out my leg muscles really hard and my hip is achy to the touch. I have been doing a lot physically with moving into our home but it isn't going away. I had my last chemo Nov 2014 and had a pcr with triple negative breast cancer. I am trying to avoid scans like the plague but understand I may need to bite the bullet. Have you ladies heard of anyone that had a pcr getting bone mets with triple negative? I know anything is possible. Thank you for all that you do on here and the wisdom that you give.
Blessings
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Thanks Z...it's so true what you posted - that no matter what stage - going thru the finding out what is and what is not is hell. Thanks for putting this into words...it helps to be here where people understand....
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Scared, I was dx in Feb, 2014, the ultrasound showed an enlarged lymph node so my BS biopsied that and the mass in my breast at the same time. I then had 6 rounds of chemo prior to surgery followed by BMX and ALND. The chemo had little effect, breast still full of active cancer and 10 of 11 lymph nodes ALL with extracapsular extension. I had an MRI, bone scan and PET, no cancer any where else. I did have 32 rounds of rads. The reason I'm telling you this is that it appears my lymph nodes had done their job and kept the cancer from spreading, it's been 2 years and I remain cancer free. I do take Arimidex. Get your scans, breath deep and take one day at a time. There are lots of ladies on here that had multiple involved nodes and never have metastasis. Hang in there... (hugs)
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Hi again everyone,
I posted about a month back and got incredibly postive and supportive feedback. Short story: recent local recurrence, CTprior to chemo revealed an enlarged hilar and mediastinal lymph nodes that required further evaluation, as well as a "significant" lesion on my left lower lung (I'm left-side dx) that could not be ruled out as mets. My MO said we'd rescan and if the lesions are gone he'll assume they were Mets and my stage will change. If they're the same we'll know they're not cancer-related.
Had the CT rescan last Friday (three days after my 5/6 TC), and picked up the report today. Don't see my MO for another two weeks. The report compares and contrasts this CT with my previous CT. Both mediastinal and hilar lymph nodes have resolved, and the "significant" lesion on my lower left lung is now gone, as is the 5mm nodule in my right lung. The only thing that remains the same is an area on my left lung that corresponds to and is probably radiation fibrosis.
So - they resolved. Hmm.
But the report also notes the following: "The only pulmonary nodule identified is a focal area of pleural thickening posteriorly in left lower lobe measuring 8 mm. This is new."
So what Ihad before went away (with chemo?) but a new lesion appeared and grew to 8 mm in 3 months? At this point I'm not concerned - it is what it is. It'll be a long two-week wait.
Any thoughts? Thanks for listening.
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I had the same waiting thing with my pulmonary nodule that was picked up just before chemo on CT scan. MO said if it goes away then may or may not have been cancer. If still there then unrelated. CT scan end of chemo no longer mentions that there is an upper nodule in my right lung (cancer is left side) but one on the lower lobe of right lung. MO thought radiologist made error and meant to say upper and it came out lower. After I was hospitalized they did a chest xray and that nodule is gone. So it seems who knows. Just cuz it disappeared after chemo doesn't mean it was cancer was what my MO told me. My lungs checked out fine last week for a follow up, I have no pulm issues so I'll take that over wondering where the nodules went as docs told me it's not uncommon to find stuff come and go in the lungs, especially during allergy season. Good luck. Try not to worry.
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If you don't already have cancer, they generally ignore pulmonary lesions in CT scans. They are often not cancerous.
Also, depending on a lot of things, the accuracy of a CT scan is +/- 5mm. I don't believe they can meaningfully track changes in size of a tumor or lesion that is close to the limits of the equipment. This is a conversation to have with your radiologist; however, from what I read, they can be more confident of their equipment than they should be.
My main point is that I hate to see people take an emotional punch to the gut over small changes in these cans. The good oncologists need to see significant progression over time and take many factors into consideration before the call a change progression.
>Z<
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Thanks Genny...for the kind words and hugs...and congrats on being two years cancer free!
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I'm a little worried. I don't know whether I should take this incident seriously. Three days ago I woke up and my whole body was convulsing in ever direction. I couldn't get my arms, legs, back, hands, feet or head to stop moving. I got scared and closed my eyes and told myself to make my body roll over. It took me about 30 seconds to roll over and everything stopped. My heart was beating so hard and my muscles felt exhausted. I calmed my breathing by taking slow breaths. Now, I'm worried it may happen again. My sleep pattern is normal and I don't eat after 6 p.m. Just wanted to get some advice, because I sure don't won't to have to see my doctor over this. Any advice or suggestions would help greatly.
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Thanks for the input, ladies. zarovka, not exactly sure what you mean by, "if you don't already have cancer" because I do have cancer, but I don't know if what's floating around in my lungs is cancer. When we got the results of the first CT my MO indicated this was not mets from my original dx (four years prior, ER+) but would be related to my current dx (TN). He did not want to do any biopsies but said that if the nodes and lesions resolved while I was doing chemo right now he would "assume" they were mets. This came up in conversation when I asked if a biopsy would determine if the mets had any ER receptors so I could use AIs or Tamoxifen as treatment. So it's hard for me not to "assume" (and you know what they say about that word!) that because these things resolved on chemo, that what was there before was, indeed, mets. What bothers me is that I don't think that's necessarily definitive enough a diagnosis (biopsy is still the gold standard) so I want to hear it from my MO (on way or another) and his rationale and explanation.
The new area concerns me, but I suspect we'll wait another 3 months and rescan to see what's going on with that one.
Part of my desire to understand all of this and be properly staged has to do with my upcoming mx and DIEP recon. I've been told I need an mx as I cannot re-radiate the area - this is the long-term recurrence prevention. But - if the horse is already out of the barn, do I want to put myself through all of that? At my last chemo my NP said, "If you have 5-7 good years, you can still have the surgery and it'll help you feel more normal" (which, again, made me wonder if they know something they're not telling me...) to which I replied, Why would I spend one year of that time doing unnecessary surgery and recon, keeping me from the things I love to do like yoga and running?
Anyway - until it's something, it's still nothing, so I'm going to enjoy this sunny spring weather. Wine festival this weekend, trip to Traverse City next week, then my final chemo - and meeting with the MO. I'll have the answer I need, one way or another, at that time.
Thank you all again for being so kind and patient and helpful. Love and blessings to you all.
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Hi kdrez,
I hear you about not wanting to go to your doctor and trying to figure this out on your own. And to forecast whether it's likely to happen again.
Feelings aside, consulting your GP/PCP would be a good next step for you. This sounds more like a problem for a medical professional who knows you than for a support group whose members aren't aware of your complete medical history and situation.
Your episode could signal many different things - some you want to rule out, others you may need to know about.
Hard and scary, but worth following up on with your doctor.
Healing regards, Stephanie
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kdrez, it sounds like you have had some kind of seizure. But remember, we're not medical professionals. I see two good options: (1) make an appointment with your PCP and tell the story. (2) Wait to see if it happens again and then make an appointment to see your PCP.
If you're going to worry a lot, please do (1). If you think you can shrug it off, you can try #2. I only suggest #2 because you say you don't want to see your doc.
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Nancy - the pleural thickening is just scar tissue if you will. Your lungs are surrounded by a double layer membrane called the pleura which was probably damaged by whatever was there. When you think about it, 8 mm is only a little more than 1/3" (8/25.4), not a real big scar.
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Many thanks ladies...I set my appointment for next week!
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kdrez, what a scary thing to have happen! I have no advice beyond what's already been said, but I'm very glad you made an appointment. I know it's worrisome, but I would be fearful of it happening again when you are not in as safe a place as your bed. Hopefully it has nothing to do with bc and was maybe some sort of serious electrolyte imbalance, but it absolutely needs medical attention, and I would be very careful about your activities (no hiking on steep inclines or swimming alone, for example), and I would even be concerned about driving until you get evaluated. I'm not so sure I wouldn't have asked for an immediate appointment, especially if there are clues in your system now (such as wacky electrolytes) to what happened. Did you let your doctor's office know what had happened? Please let us know what you find out. (((Hugs))) Deanna
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Many thanks....my appointment is on Monday afternoon. Guess I was scared enough to vent. Again, blessings to you....
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Better treatment options in Mexico. USA still only uses surgery, chemo and radiation. Not very good options since
chemo and radiation almost always create recurrence a few years later. Better to use an integrated approach in
Mexico.
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Many doctors begin treatment and the person may not have cancer at all. Get a
second opinion.
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Many doctors???? Sadly, there have been one or two in FL that I recall reading about -- cases that made the national news involving unnecessary tx for what the patients were told were skin cancers. But I don't think I've ever heard of anyone in recent years in the US totally mis-dx'd for bc, although I suppose you could argue that in some situations DCIS might be treated more aggressively than necessary. But your assertion is not something most women, especially newbies, need to worry about. I absolutely agree with you about second opinions, but not for the reason you give.
As far your post just above that one -- if you or anyone makes a statement about recurrence rates, you need to back them up with research and links so that we can decide for ourselves on the credibility of your sources. As far as I know, the acknowledged recurrence rate for bc is around 30%, which varies significantly depending upon each patient's initial stage and other aggressiveness factors. "Almost always create recurrence" is a totally ridiculous thing to alledge, as the majority of women who are treated for early stage bc don't have recurrences.
And by the way, I am extremely pro integrative and alternative medicine. But allopathic meds -- not DIM nor apricot kernels (both of which I've used in the past, by the way) are keeping me and many other women here alive. Our doctors are well aware of the shortcomings of chemo, and thank God for the researchers who are working hard to bring new immunotherapy and targeted meds to market to replace them. They're my heros!
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Mexico? Uh, I'll pass..
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Scared67,
I had an extracapsular extension along with 20 positive nodes. I've also had every test in the book and there's no metastasis. I could not believe, that with the biopsy findings I had from the surgery, there would be no mets. But so far so good - no mets.
It took every single test they had and I insisted on all of them, to reassure me. Fortunately it all worked out and I can move forward without fear for awhile.
I hope the same for you.
cb
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Well said Deanna!
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hi all it was suggest that I cross post this here
I'd really appreciate some feedback if someone has had similar secanrio - and what it may be. I'm panicking a bit as I suppose we all do when we are waiting for doctors.
My Onco took me off hormonal treatment just before Xmas. In February I developed a cough - which I thought was a cold. It got a bit better - sometimes a bit worse. Now I've had it for over 3 months. Before this I felt I was loosing my voice if I talked for too long or I developed a husky voice which a few said was quite sexy lol. I also had some trouble swallowing - it felt like I was getting a sore throat. I also have a gastric band so I had it loosened and that seemed to help a bit with that.
I've had an X-ray but that was clear and taken a double course of avery strong antibiotics and steroids to no avail. I've always felt like chemo damaged by lungs during treatment almost 5 years ago. I've learnt to live with it - like someone has but a rubber band around my ribs so I can't expand my chest to get a deep breathing without having to yawn. When I do get a deep breath it feels like I'm breathing in icy air on a winters day. I had three initial idc - but only one showed on scan at that was just be cause it looked out of place! I had one of these cancers detected when I had a mx post chemo which wasn't visible on MRI even thought it was 8mm. Thy were all mutinous.
I have now done a CT scan with contrast. They have identified a number of large lymph nodes but no masses in my chest. Nodes are 1.3 up to 2.2 cm in size - so they are not small! Radiologist suspects NHL. I think I can hear a raspy sound when I breath. Right side lung function is slightly less than left - and nodes are mainly rhs side and centre on mediastinal and hilar and pretracheal. I also have neuropathy on trigiminal nerve which means my face feels slightly mumb on one side. I been having MRIs for 2 years now to monitor a hyper intensity near the tri nerve but No change with that issues during that time fortunately.
I now have to wait 6 weeks to see a pulmonary specialist and my Onco has taken the month of June off. I'm not a medical doctor but I'm Wondering if its either sarcoidosis or potentially mets. I'm crossing my fingers it is just a cold virus. Has any one had similar and it was confirmed,ed as mets? Can some sort mets not show up at all until the lamp nodes are enlarged? Really appreciate some feedback here whilst Iponder if I should get my gp to give me a scrip for xanex
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Nancy - What I meant is that that when a patient without cancer presents with pulmonary lesions they will often assume the lesions are not cancer. non-cancerous pulmonary lesions are the most common type. and my understanding is that non cancerous pulmonary lesions can come and go.
i have a pulmonary lesion and i have roughly the same thing going on as you.
it only matters if the lesions or absence of lesions are changing the mo's thinking on a treatment plan. Press him on that. if the lesions factor into the treatment strategy, then press him on why he things they are cancer. the fact they disappeared is not enough. get a second opinion, get another diagnostic.
in my case, they are not changing the treatment plan so i am ignoring it. there are so many things appearing and disappearing on my scans that my strategy is to keep my eye on the ball. the first question i have for my doctors is ... how does this effect the treatment plan?
if it doesn't, i forget about. if it does effect the plan, i make them confirm their diagnosis somehow. i don't trust scans. i've had more than the usual number of scans in a short period and the results are all over the place when it comes to little lesions and small changes.
i was also told the horse was out of the barn and the goal was to keep me healthy. i read all kinds of ominous things into that until i realized ... the goal is to actually keep me healthy. when you are stage IV your bodies ability to fight is the strongest tool available. and it is a powerful tool. there is even a name for it. it is called functional medicine.
for starters, there is an entire lab at memorial sloan kettering. their hypothesis is that exercise can have an equivalent beneficial effect as chemo. so if they are right, you need to think twice before you pursue a treatment that keeps you from running and doing yoga.
certainly wait and see is a very reasonable strategy.
>Z<
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CB - Thank-you so much for your reply...and kind words...
I don't know how I would have made it over these past several days without this thread...
I got the final results of my nodes today and there were just 2 more found to be positive... Appt. with oncologist on Friday and chemo to start very soon!
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Scared67-wow. Good luck with chemo! How are you healing from your surgery?
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Hi Georgia - So far I think I'm healing pretty good.
I had bilateral mastectomies and reconstruction on 5/18. And, recovered quickly from that...
And, an axillary lymph node dissection on the right side on 5/31. But, that side is still so tender! And, am a longggg way off from having range of motion on that side!
Anyway, yesterday the BS told me - I might start chemo - next week. But, won't know more until my appt. with the oncologist on Friday...
It seems to be happening so fast now....
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