If you are not Stage IV but have questions, you may post here
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Hi Bcky, I'm so glad that you got to the bottom of the problem. It's unfortunate but the one thing you really need to do no matter your stage or treatment is to not let yourself get over tired. Your body is dealing with so much that putting that extra pressure on yourself can really make side effects a whole lot worse to deal with.
Be kind to yourself and rest when you need. So glad that you can relax a little..
Love n hugs. Chrissy
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Hi everyone, I would like to know if it's possible to have recurrence at the area between the two chests. I had a left umx in 11/2016 and recent surgery to remove TE in 04/2019. Then a few days ago I noticed a little pouch or puffiness between the two chests. I have no symptoms .
Thank you.
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Houston, you can get a recurrence at the midline of the chest, but a 'puffy pouch' may be something less serious too. Many years ago I had a puffy spot (mine slightly more to R of midline) and it resolved on its own.
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I am currently doing a research study about prediction of breast cancer stage by simply analyzing the degree of each symptoms. It is really possible to detect stage of breast cancer by merely looking on the signs/symptoms? Please help.
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thanks ChrissyB
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Hello,
Am a bit confused about something i have read, so am putting it here so someone might be able to help.
I have just read on a bone mets thread, that stage 4 isnt stage 4 unless its found de novo.
They went onto say, that if you afe originally diagnosed as a stage 2 tumour, but mets are found, you are classed as stage 2 with mets.
Is this right? It goes against everything i have been told thus far.
The individual then posted a definition, please see below.
Is this correct please, Are bone mets, liver mets etc not stage 4 but whatever stage you were at diagnosis plus mets?
Here’s the quote......Here's the staging terminology explanation from the American Cancer Society:
An important point some people have trouble understanding is that the stage of a cancer is determined only when (or soon after) the cancer is diagnosed. This stage does not change over time, even if the cancer shrinks, grows, spreads, or comes back after treatment. The cancer is still referred to by the stage it was given when it was first found and diagnosed, although information about the current extent of the cancer is added (and of course, the treatment is adjusted as needed).
For example, let's say a woman is first diagnosed with stage II breast cancer. The cancer goes away with treatment, but then it comes back and has spread to the bones. The cancer is still called a stage II breast cancer, now with recurrent disease in the bones.
If the breast cancer did not go away with the original treatment and spread to the bones it would be called a stage II breast cancer with bone metastasis. In either case, the original stage does not change and it's not called a stage IV breast cancer. Stage IV breast cancer refers to a cancer that has already spread to a distant part of the body when it's first diagnosed.
This is important to understand because survival statistics and information on treatment by stage for specific cancer types refer to the stage when the cancer was first diagnosed. The survival statistics related to stage II breast cancer that has recurred in the bones may not be the same as the survival statistics for stage IV breast cancer.
At some point you may hear the term "restaging." Restaging is a term sometimes used to describe doing tests to find the extent of the cancer after treatment. This is rarely done, but it may be used to measure the cancer's response to treatment or to assess cancer that has come back (recurred) and will need more treatment. Often the same tests that were done when the cancer was first diagnosed (such as physical exams, imaging tests, biopsies, and maybe surgery) will be done again. After these tests a new stage may be assigned. It's written with a lower-case "r" before the new stage to note that it's different from the stage at diagnosis. The originally diagnosed stage always stays the same. While testing to see the extent of cancer is common during and after treatment, actually assigning a new stage is rarely done, except in clinical trials.
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Hi Treehouse,
I remember seeing that article. It confused me also. I was restaged when the cancer spread to my lymph nodes and bones after 17+ years. My MO just told me it was Stage 4.
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Treehouse,
I think the point is that for statistical purposes, your original stage is the relevant one. But once you've had metastasis to a distant site, my understanding is that it's stage 4, aka "advanced" breast cancer.
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hi both
Yes I always thought that. Thats what the onc's call it too.
I just wondered if theres been some new research or downngrading or something
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I too noted this information and wondered about it.
If you search this site for staging you will find an article and podcast on the latest staging techniques. This article says staging, with the additional information we can now access through tumor testing, is quite fluid.
However MO says once you reach stage IV you are always stage IV. I am currently stage IV NEAD.
If my original stage at diagnosis was maintained I would be stage 0 (having my original diagnosis in 2013 as DCIS).
Hope this helps.
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Could I ask how does BC METs show up on Brain/Cervical MRI's? Do they show up as white matter lesions? How are Brain METs dxd or differentiated from lesions due to MS and other demyelinating diseases?
TIA.
Got my MRI results today from my MO. No real discussion due to other issues. See my Neuro for "the game plan" on Thursday. Multiple new white matter lesions seen, including brand new areas of concern/lesions in cerebellum, brainstem. My MRI's had been stable for the past 6 years prior to this. Just 7 months ago, my last scan was stable. Now, it is much changed. Worried.
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Hi Spoonie. I'm not a doctor but I have seen MRI's that show Mets in white matter and on or near the brain stem. They look like bubbles within the white matter but the MRI's were from otherwise healthy people so I'm not sure how your condition would be differentiated.
The best person to ask is your Neuro, naturally, so hoping your appointment on Thursday gives answers to all your questions.
Sending gentle (((((hugs))))) to help support you.
Love n more hugs. Chrissy
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Bcky, I read that you had “mild seizures” from tamoxifen. Was this when you first started or a new symptom that showed up later. I’ve been on tamoxifen for 3 years now and I did have hallucinations in the beginning. They were really awful. My family witnessed me having them. It was crazy to say the least. But now after 3 years and relatively adjusted I’m having facial spasms. I’ve had them for a couple months now. The left side of my face droop. My eyelid closes slightly am due my lip curl s up. I look like a pirate. Oncologist doesn’t think it’s from the cancer or the medicine. Anyone else’s have is happen? Shouldn’t i worry about mets
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Hi Spoonie,
Sorry for the late response. I'll attach my PET scan of my brain met, I don't have access to my MRI. I don't know that they can differentiate them from lesions for other reasons such as MS without doing a biopsy, but I'm not 100% sure. In my initial report they just called it a lesion and my doctors said it was most likely from breast cancer but they wouldn't know until they tested it. You've probably already met with your doctor by now, so I hope they can give you some clearer answers.
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Mom2, those symptoms are usually associated with stroke so I'm super surprised that your onc has done nothing to check it out. If I were you, I would be pounding at any docs door demanding you get completely checked out to find the cause of your symptoms.
Hope you get some answers soon and please let us know how you get on.
Love n hugs. Chrissy
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Mom2,
Stroke? Bell's Palsy? Whatever you are experiencing, it's not normal. I wholeheartedly agree with Chrissy. Get to a medical professional other than your oncolgist pronto!
Tina
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I would go to a neurologist, Mom2. Like tomorrow. If your medical insurance or PCP won’t help you obtain an appointment, maybe get one via an ER doc.
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I did consider the concept of this being a stroke. When it first happened I had just taken a flight to San Francisco from Newark so I was a little worried with tamoxifen that it was a stroke. But it didn’t progress, a didn’t lose any ability to move, and my speech was fine. So I sat and waited to see what happened. It’s been a couple months now and happens quite a few times a day but its not dramatic. I’m just afraid that if I go into an ER or a neurologist it will mean I have take a bunch of time off of work for random tests that tell me nothing. I was hoping if it was something it would get worse and then isn’t know I needed to check it. But when I was reading this forum and people were talking about brain Mets and seizures I thought id check to see if anyone else had this happen to them.
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Mom2,
You have worked hard to be cancer free. I totally get not wanting to engage in more doctor’s appointments and tests...BUT...what you are experiencing is not normal. It may not have anything to do with breast cancer or Tamoxifen. Don’t self diagnose. Get to a neurologist like Monday. If the neurologist finds nothing...that is an answer too.
If you are at risk of a stroke you need to be treated to prevent that from happening.
Take care of yourself!
((Hugs))
Bella
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ChrissyB and AllyBee -- thank you for sharing. You were both right that Brain METs do show up very differently than other lesions which are due to non cancerous reasons. Brain METs definitely do have the "bubble" you described. My Neuro said the extra bubble portion is usually due to swelling/edema due to the tumor lesion.
Just wanted to follow up concerning my question about Brain METs and MS lesions.
I did see my Neruo and it's official. After 10 years of having a 'probable MS or high risk for MS' historical dx I've now moved past that into an active MS dx. This current Brain MRI had 15 new lesions. Located in my brain, my brainstem, and in my cerebellum. These were not there 7 months ago in my Jan 2019 MRI.
Most measure 5-8 mm but my Neurologist was very clear, that in no way shape or size are these lesions at all cancerous. They are MS lesions/plaques (very different MRI characteristics vs METs) and represent areas of damage to my brain (white and grey matter) due to my immune system attacking it mistakenly. And like Google told me, he confirmed for me that yes, lesions found in the brainstem and cerebellum don't usually happen unless in MS or other demyelinating diseases.
Funny, I did teach my Neuro something.
I mentioned to him about finding info that lack of estrogen seems to bring on more severe MS attacks in women, to which he said, "No. That's not correct, as fas as I know.". He then did a quick check on his computer, and said, and I quote, "Well, look at that! Sure enough. It's right there, in menopause and in post-partum, decreasing levels of estrogen, estradoil, and progesterone, can trigger MS attacks." It seems then that my being on Tamoxifen and later on Zoladex, both meds decreasing my hormone levels significantly, likely played a role in the development of my new brain lesions. (not METs).
We talked over some of my other symptoms and concerns, and after doing so he agreed it would be good to get a baseline of my spine, even if nothing ends up being revealed on the scan. So I go in next week to have a Thoracic Spinal MRI, with and without contrast, to determine if I also have lesions there too. I've never had one before so I'm a bit nervous about what they will find. Fingers crossed nothing is seen.
I also see Ear Nose and Throat next week to continue to try to unravel the mystery of why my lymph nodes continue to swell, itch, and ache even though it's clear that my allergic reaction to Zoladex has passed by now. My throat tissue no longer swells in size, it just "burns" and "itches". Which according to Neuro, could be a MS symptom, perhaps my spinal cord MRI will show lesions there. If so, that is likely the reason for those odd symptoms. I also have trouble swallowing at times, but my Neuro said that could be due to the MS and where my lesions are.
The Spoonie Saga continues.
Hope you all can have as peaceful and healing of a weekend as possible. I'm going to do my best to forget all medical related issues and just unplug.
Here is a good comparison image of various brain lesion presentations (MS, LYME, ENCEPHALITIS, BRAIN METS, ADEM, LYMPHOMA, TBC, SARCOID) in a MRI image:
(brain METs lesion shown upper right hand corner, MS lesion middle center, Lymphoma lesion bottom middle)
(MS lesions entire upper row, Sarcoid lesions bottom left, Lyme Disease lesion bottom middle)
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You can have mini strokes. My dad had this. He shrugged it off each time because he was ok. Now his left side has become comprised. If I were you I would have got in to the doc after the first time. We are not docs. But we all agree it's not normal. See what the doc says. You may be saving your own life.
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Hi Spoonie, thanks for letting us know your results and I'm very glad that no Mets were found but so sorry that you now have active MS.
I'm keeping my fingers crossed that your spinal MRI shows nothing new but having that baseline is a good thing.
Great idea about turning off all medical stuff and enjoying the weekend......good for you!
Love n hugs. Chrissy
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Has anyone been diagnosed beginning from results of routine bloodwork rather than pain or fracture? My original diagnosis was Sept 2017 but at my check up in July of this year my onc said my ALP levels were slightly elevated and they were going to keep an eye on them. They have continued to slowly rise over the last few months and my fractionated ALP indicates the "problem" area is bone not liver. However, after telling me that in July, even though levels are rising, no other tests have been scheduled and they just keep telling me to let them know if I have bone or stomach pain and then they will bring me in. I am nervous and confused now. Do I have to wait until I have pain for a bone scan? Would it be too early to detect small mets if that is what is causing the change in my blood work?
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Hello everyone! I am still in active treatment, I had chemo, now in rads and tamox. I'm grade 2. In September 2018 my scans were clear ... only local disease. My question is ... according to my statistics, what would be the minimum time that could pass until having a recurrence? How long does it take to form a metastasis with grade 2? Months, years?
I appreciate any experience in this regard, since I have to plan family issues that depend on my state of health. Thank you!
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Hi singesa,
I had a enlarged lymph node that you could feel. I wasn't considered stage 4 until my Pet then biopsies were done.
You could just tell them you are in pain if you are concerned. Then maybe they will order scans for you.
Sorry Sonia. I can't help with your question. Mine waited 17+ years to show up.
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Yndorian, I think that it is possible that cancer can be metastasized before you were diagnosed, but just not caught yet. Of course, none of us want that.
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Question - my red blood cell counts and hematocrit levels have been testing low for a while - (I was diagnosed last yr Stage1-2 - on the bubble bc of sentinel node involvement). I just had my GP retest my bloodbecause I have been a bit dizzy and fatigued and they are below normal while iron is fine (I supplement). Of course a Google search says low red blood cells and hematocrit can be a sign of cancer in the bones. Is this a leading indicator of bone metastasis?
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Hi Staceybee, Don't think the worst!! It sounds like you are anemic. Did your GP order any more test to see why? Did your GP say you would benefit from a B12 shot? Have you changed your diet?
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Hi Staceybee,
Did you go through chemo and radiation? If so when did you finish? It took me a good year after my adjuvant cancer treatment ended before my counts recovered. My counts were also normal when I was initially diagnosed with stage 4 mets to the bone.
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Thank you for the responses. My iron and B12 is fine, just the red blood cell count and hematocrit continue to be below normal. I had radiation a yr ago. I see my oncologist in 5 wks for my 6-month and will have it checked again.
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