If you are not Stage IV but have questions, you may post here

Spoonie77

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)

Artista928

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.

chrissyb

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

singlesa

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?

Xxxxxxxxxxxxxxx

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!

Simone80

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.

DorothyB

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.

Staceybee

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?

flashlight

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?

Simone80

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.

Staceybee

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.

bella2013

Stacybee, when I went in for my BMX/DIEP surgery, my hemoglobin was 15. Right after surgery it dropped to 7.5. It has taken 19 months for it to reach 12.4. My Red blood cells are right in the middle range but my hematocrit is at the bottom of the range. Chemo and rads can leave you anemic. Supplements, supplements, supplements!!! Fatigue can be an issue but your AI might be contributing to the fatigue. Remember it is sweeping out the last drop of estrogen in your body

RowWellandLive

I have a question for the stage 4 ladies and don't know where to post it. I am close with a family who just lost their young sister/daughter to metastatic breast cancer. People want to do something so they are searching for a charity to donate to. Is there a group that is truly searching for a cure that spends donations wisely? Any suggestions? Thanks.

LoriCA

Hi RowWell, I'm sorry about the loss of your friend. Donating to a charity is a great way to honor her. Metavivor spends 100% of donations on research grants for metastatic breast cancer and is the charity that most of us recommend - https://www.metavivor.org/about-us/

RowWellandLive

Thank you so much Lori.

Moderators

Of course, and without pressure, Breastcancer.org is also a nonprofit, and we rely on in-kind donations from those who we have helped

LoriCA

Yes, sorry Mods! I didn't intentionally mean to leave BCO out, it's been a tremendous help to so many of us!

RowWellandLive

duly noted!

Mallory35201

Hi,

My mom recently went through breast cancer and had radiation ect, After a recent check up and because of her complaining of back pain doctors now believe the cancer has spread to her back. Going through the entire Breast Cancer process was extremely hard for, especially as a college student. Looking on google and searching on the topic has extremely terrified me and I would appreciate any information or personal experiences you guys have had.

Simone80

Hi Mallory,

I hope it turns out that her cancer has not come back. Take a deep breath. One thing I do not recommend is googling on stage 4 stats. Those numbers are so outdated and many women are living much longer with the disease now. This site has a wealth of helpful information. There are also a lot of Good books out there. If her cancer has come back, find a good cancer center that provides full cancer support (alternative care, pain management, etc). They will coordinate all that which takes a lot of the stress off of you and your family.

Btw. I had bone mets, I am now NED ( no evidence of disease) after 8 months of ibrance and letrozole.

ucfknights

what were your signs and symptoms for Mets? My mom found a lump on her lower back left side (it's like on muscle not the touching the spine at all) but she had a lipoma/cyst about 10 years ago and it's in the same spot bc you can see the incision where they took it out She has no back pain or any pain at all.

Simone80

ucfknights,

I did not have any pain. I had a enlarged lymph node in my neck which started the whole testing process. The bone Mets (hip, tailbone, rib) showed up on a PET scan. I know some of the other women have had pain with their bone mets.

Maybe her cyst is growing back, I've heard of that happening. Anyway, I would have a doc check it out just to be safe.

ucfknights

has there been any cases where someone had a lump in their lower back region and had spinal mets? Would i check with her MO for this concern

DivineMrsM

Mallory, first thing one doctor told me was to not go on Google and scare myself. Find one or two trusted sites where you find reliable, trustworthy medical information and don’t keep digging on the internet.

There are treatments even if her cancer spread. Simone said take a deep breath. I agree. One step at a time. I was diagnosed with bone mets to hip, rib and scapula almost nine years ago. Many of us frame this as living with metastases, not dying from it.

My son entered college the first year I was diagnosed. Please take care of your college work. Help your mom when you can but it’s okay to take care of yourself, too. Take this one day at a time. If she gets a diagnosis that requires further treatment, take it one step, one day at a time.

Laine615

Mallory,

I have a lipoma in my lower back just as you have described. I also have mets to bones but the lipoma is noncancerous. So it is possible that it's benign. A biopsy will tell her for sure. See if hee PCP or MO can order one.

ucfknights

Laine, how did you find your bone Mets

Mallory35201

Thank you, I’ll let her know and hopefully that’s what it is. Praying

vampeyes

Mallory,

An ER doctor told me he thought I had mets due to spots that showed on my spine during an x-ray. I went for a bone scan and it was found to be Osteoarthritis, hopefully that is all it is for your mom too.

HUGS

Houston2016

Hello again everyone,

I have general question but it may link to recurrence issues. I had left UMX in 11/2016, chemo and rads ended on 01/31/2017. So far I feel great going to the gym 5 times a week. The last mammogram I had on the right breast was June 2018 and in April 2019 full breast US. The radiologist insisted that I need to do another mammogram even though the one in June 2018 showed my right breast was too dense to show anything. Hence, I always follow up with US. I think the mammogram was too much radiation plus they can't find anything anyway. My BS talked to me and I asked what is the chances of me getting cancer. He said 89% mammogram will stay the same and 12% DCIS calcification since US does not pick up calcification. So far I have not done mammo but lately I started to feel a little fullness of the right breast light discomfort sporadically. Should I go ahead with the mammogram or the MRI which I also consider the latter one. Thank you all for any inputs.

vampeyes

I have likely asked this before, but my spine (cervical and thoracic) seem to be getting worse for pain. I wonder if it's a SE from Tamoxifen, but my ONC didn't seem to care to discuss the SEs it's been giving me. My bone scan last year started osteoarthritis, but I worry it could be misdiagnosed. I am tired of the pain. I do massage therapy, tylenol, Advil when it's really bad, THC oil, stretching videos. I have changed my diet to remove as much wheat, beans, bad sugar as possible. Added certain vitamins that help with joint pain - they helped with my wrist and hands, but the spine still hurts. Am I worried over nothing? Thanks to all for reading.

Hugs