If you are not Stage IV but have questions, you may post here
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Did anyone experience unexplained weight loss?
I've been emotional eating due to scanxiety and lymph/neck swelling for the past two weeks, yet in the past week I've now lost 7 pounds.
Weight loss for me has always been a struggle and I'm definitely not exercising any more than just walking my dog around the block twice a day. In fact, yesterday I ate 4 pop tarts. Yet somehow between yesterday morning and today, I lost 2 more pounds. (total of 7)
If I lose at this rate I will hit the 6% body weight loss in another week....more than half way to that 12 pound number.
Color me worried.
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MountainMia,
I found a enlarged lymph node in my neck during a self exam. I had no pain and was quite surprised when they told me it was also in my hip, ribs, and lower back.
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MountainMia,
I found a enlarged lymph node in my neck during a self exam. I had no pain and was quite surprised when they told me it was also in my hip, ribs, and lower back.
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MountainMia,
In response to your question, this was the sequence. May 2018 CA 27-29 up to around 55; had CT and nuclear bone scan -- nothing showed. October 2018, CA 27-29 up to 94. CT and nuclear bone scan -- zippo. Asked for a breast MRI in case it was a local recurrence (although I had a bilateral mastectomy). Nothing. Wrote an email to Dr. Hortabagyi at MD Anderson asking what he would do (although I don't know him at all). He said if it was him, he'd have a PET/CT. Had PET/CT in Nov. 2018 -- nothing. Jan. 2019 tumor markers now at 181. Had consult at Hopkins in February -- everyone said they don't treat on markers -- rescan in spring. May 2019, a "wrinkle" appeared in the CT scan, nothing on nuclear bone scan. PET scan verified the wrinkle, although no one knew what it was. MRI of the abdomen followed -- oops, there it is. One liver met about 2 cm (and it didn't even show up before this???!!!) and maybe about 5 more teeny ones in both lobes of the liver. Liver biopsy also in May of the 2 cm lesion -- ILC, same as diagnosis in 2003!!!!
Bev
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Mia , may be markers and full body MRI every 2 years?
In practice I do not think this regimen will be approved and I am not sure it will be worth for you to spend your money on it.
Why don't you read "50 things one should do when diagnosed with breast cancer"( the title may be not exact but if you Google it will come up) and just live your life according to it ? I am sure it will beat early detection of metastasis since I believe studies did not show improved survival with early detection
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Thanks, Anotherone. I was just curious about how mets presents itself, and apparently the answer is that it presents in many many different ways.
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The symptomless is scary.
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Anotherone,
I've heard that same comment about how it doesn't matter if it's found early. I don't know how much stock I put in that. That assumes that we all have the same end point once metastasis is found. That may have been true at one time when there were very limited treatment options, but I'm not so sure it's true now necessarily. I realize that the American Society of Clinical Oncologists keep repeating that mantra, but when I hear it, I just want to slap them. We need docs who will think out of the box instead!
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yeah I myself am not sure as it is counterintuitive. But then again by the time they can be detected with tests they would have been there for a while anyway..
Mine got gigantic before they caused symptoms
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BevJen - so much agreement with you on this quote! -- "I've heard that same comment about how it doesn't matter if it's found early. I don't know how much stock I put in that. That assumes that we all have the same end point once metastasis is found. "
My view is, even if finding mets or progression early doesn't change overall survival (maybe the only thing they are measuring) are they saying it cannot improve QOL? Like right now...my MO had wanted me to go to yearly scans after not quite 15 months of NED. And I disagreed and said I wanted to scan again in six months. And lo and behold ....one of my spine lesions was active again (lytic) should I have waited until I had a fracture to treat it? Not to mention, what are the consequences of walking around with an increased tumor load...and don't mets themselves metastasize and spread elsewhere?
It is a balancing act as far as I am concerned. I am in agreement with my doctor about not scanning TOO much, but every six months seems about right to me for now.
As for how my mets were found, I am happy to tell my story again. I am another asymptomatic gal.
I had not been going for regular mammograms even though I was at the age that I should have been. A 2 cm palpable lump appeared on my breast out of nowhere in a spot where a smaller lump would have easily been detectable (so to me, it must have grown very quickly).
I went from diagnostic mammo/ultrasound to needle biopsy with u.s. to consult with surgeon, breast MRI, more US and needle biopsy of two other breast areas. No other cancer found thru the biopsies but the breast MRI showed a suspicious spot on my lung. From there, a PET/CT was ordered and ruled out any lung involvement BUT the scan found a number of bone mets. I went from healthy to Stage 2 to Stage 4 de novo in two months without any symptoms. My first tumor marker tests (CA 15-3 and CEA) taken before beginning chemo were in a normal range.
Without the breast MRI showing a false positive, followed by the PET scan, I would not have known about the bone mets, at all.
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Question - 5 months ago I had a CT, a cyst was found on my liver and follow up CT was to be completed. Got the results back and of course everything starts with likely.... so likely a cyst on my liver grew very little 0.5 to 0.6, tiny renal cysts, there are some findings that could suggest chronic bowel malabsorption, bilateral ovarian cysts are likely present - this one makes me laugh as I know I have the cysts and they state they are likely follicle, but nope one is and the other is complex. So my question is how the heck do we know if they are actually cysts and not cancer? Why are they not following up to see if they grow more?
Thanks for any help.
HUGS
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Vampeyes,
Another puzzler from my perspective. When I had my MRI of my abdomen that showed my liver mets this May, that scan also showed some type of cyst at either end of my pancreas. NO ONE has mentioned these since May. I actually forgot about them, intending to ask my MO if I should be seeing a gastroenterologist or someone else. So I don't know the answer to your question or to mine. I'm not sure what warrants a followup and what doesn't -- and how the heck would WE know?
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Has anyone been dxd with METs to the Thyroid?
They found a nodule on last week's US due to swollen lymph nodes. Family hx of Thyroid cancer so maybe "just" Thyroid cancer. But am worried.TIA for responses.
It is no longer the time to disregard thyroid metastases from breast cancer: a case report and review of the literature
"This case report and first review of the literature on metastases to thyroid from breast cancer highlight the importance of a correct early diagnostic work-up in such cases. Indeed, a primary lesion should be distinguished from metastases given the different treatment protocol related to primary cancer and the clinical impact on prognosis."
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Breast cancer mets to my neck's 3 central lymph nodes here--with no evidence of primary breast cancer or other metastases (so far).
As for the unexplained weight loss mentioned earlier in this thread, a dear friend of mine with breast cancer in remission for 6 years recently started losing a pound a day, despite eating like a stevedore, which set off alarm bells with all her physicians and led to an intense round diagnostic testing/scans.
Turns out that she went from hypothyroid to hyperthyroid.
They lowered her thyroid medication and she's all back to normal.
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Thanks Globalgal! I had no idea a switch from Hypo to Hyper could happen. Good to know for the future. Wish that was my case but my PCP checked my Thyroid labs earlier this week & all is in range. Monday is almost here. Fingers crossed my MO can tell me not to worry
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Hi Simone80,
I also felt like my right side lymph node under my jaw has a little lump while the left side is flat. I've been losing weight 5-10 lbs in the course of 2 months. Which Dr. Do you see about this?
Thank you
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Hi Houston,
I went to a head and neck surgeon who has experience with cancer. He did a biopsy the same day. My insurance doesn't require referals. You might need to see your primary first. Good luck to you.
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I have a question about when you are considered stage IV. I have just been dx with my 4th recurrence. It is obvious that conventional treatment is not working and I have progression. Just not sure if I am now classed as stage IV because my recurrences are in same area. I don’t know why it is important but I think because of the treatments I am now investigating. With every recurrence my knowledge of treatments increases...
Thanks and love to everyone....
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Hi mccathyg. The term Stage IV is applied when cancer recurs outside the breast. The bones, liver, lungs and brain being the most common but can also occur in the peritoneal cavity and in the plural. If your recurrences are all in the same breast then that is still the lower stage.
Hope this helps.
Love n hugs. Chrissy
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BevJean,
I am sorry to hear of your liver mets diagnosis. Sending thoughts and hugs your way.
I seen my doctor yesterday and asked about the cysts. The cysts on my liver, lung and kidneys is of no concern to my doctor even with my breast cancer history. He stated that he could line up a bunch of women my age without my history and they would have the cysts. That made me feel relieved. As for the ovarian cysts those we will follow every 3 months until they can get me an appointment with an oncologist gynecologist. So I guess I trust him and enjoy not having a ton of scans and doctor's appointments for now.
Take care.
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Hi everyone, thanks for having this thread for questions. I have a question directed to those with ILC and mets. I read somewhere in one of these threads about a member who said that their mets was not seen on a pet/CT scan, and I believe that it was only seen on a CT with contrast if I can remember right. I can't find the post now, but it struck a chord with me.
I am very fearful that ILC won't show up on some imaging (those based on targeting rapidly growing cells) because I have a pretty low mitotic rate. I had a pet/CT before surgery which only showed a "mild" increase in uptake in my right breast, but that was with a 4 cm tumor. On MRI the disease was multifocal and extensive in that breast. I brought up my concern with my MO, and he said that I was technically right, but not to worry because that means my risk of recurrence is low.
I recently had a chest x-ray because of a cough and it showed some infiltrate in my lung that my MO is attributing to radiation, and he put me on steroids for it. When I read the radiology report it also showed degenerative changes and wedging of my upper thoracic vertebra. My MO didn't even mention this to me, so I mentioned it to my GP, who I have a better relationship with. He said that compression fractures are not uncommon in those with bone loss (I have osteopenia in my spine and osteoporosis in my hips) and that if it were cancer it would have shown up on a scan.
The explanations for both the lung and the bones are perfectly rational, but I am so scared of that sneaky ILC. How do I just trust my doctors and let things go? I feel like I'm being irrational, and I really just want to move on. I thought maybe be asking here I could get a bit of a reality check.
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Dear What...,
I was originally diagnosed I 2003 with ILC; single site metastasis in 2006 on my cervix was found by my gyn. Diagnosed this May with mets to liver. ILC is sneaky, and my tumor markers were going up for a year before anything showed up on scans. I was very vigilant once the TMs started going up -- asked every doc to whom I go what scan would show something. I had repeat CTs and nuclear bone scans; had a breast MRI because I wondered if it could be local recurrence; had a PET/CT. Nothing showed up for months. Finally, in May, my CT showed a little "wrinkle" in my liver; PET/CT verified something was there, but not what. MRI of my abdomen with contrast was the only thing that showed the actual lesions on my liver. So basically, I don't know the answer here. Docs seem aware that some scans show more than others. However, they generally try to err on the side of fewer scans if they can. At this point in time, if I had known that the MRI sensitivity seemed to be better than the other tests, I would have pushed for one sooner. Also, I would have pushed for 3 month scans rather than 6 months. But what's done is done.
I would tell you to simply be very vigilant, and to keep the lines of communication open with your MO and with your primary care physician. Many, many BC folks do not have metastasis, and so I would simply try to keep that in mind as well.
Good luck!
Bev
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Thank you Bev for sharing your story. I have heard several times more that detecting mets before physical symptoms appear does not improve the outcome and that's why doctors don't order more scans. It seems to me though that a whole year, as in your case, could make quite a difference. I don't even know what the plan is as far as tumor markers and scans from here out. I guess I need to get my MO to nail down some sort of plan.
I will try to stay vigilant, and try to keep from worrying about things that will probably never happen. I wish all the best to you!
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Whatjusthappened (great name), I will respond to several of your questions.
Regarding finding mets early, my view is that while finding them earlier might or might not change a person's longevity (response to treatment is very important), it may improve one's quality of life. For example, finding ER+ liver mets when they can be treated with endocrine therapy instead of emergency IV chemo with accompanying hair loss. Or, finding and treating bone mets before they have a chance to cause a fracture.
It appears that for ILC ascites from peritoneal mets, CT with Contrast is the most helpful imaging. So for an ILC patient with abdominal bloating and pain an onc would probably order this scan.
Regarding low recurrence risk, yes that should be encouraging, but do not let your MO act as if low risk means no risk. Someone, unfortunately, will be in the unlucky 3%. (Me) You are concerned about your lungs and bones, and you want to feel confident that your onc is taking you seriously and doing the appropriate scans. I hope you can either meet with your onc to talk more about this, or get a second opinion at a NCCN center. One thing that should not be forgotten is a simple physical exam, as in pressing around and asking if anything hurts.
You know that MRI showed the ILC in your breast, so if you have symptoms in the future and a choice of scan modality, perhaps your onc would choose MRI.
For me personally, the grade 1 early stage ILC showed up on mammogram, ultrasound, and MRI. The grade 2 mets show up on everything, too (PET-CT, CT with Contrast, MRI, and ultrasound).
Below is an edited version of a post I made a couple years ago.
PET/CT and ILC -- ILC Symposium 2016, Report from ShetlandPony
(This post is based on notes I took at the symposium, and reflects my own understanding. Please consult the literature and your own experts to verify and apply.)
My notes from the radiologist from Memorial Sloan Kettering Cancer Center, New York:
A PET scan uses a radioactive glucose tracer called FDG. Cancer cells tend to metabolize this at a faster rate than normal cells, and thus light up on the scan. According to the doctor, "ILC is often less FDG-avid than IDC." Therefore it is not enough that the radiologist reports "no FDG-avid malignancy". He maintains that "...scrutiny of the CT component of the PET/CT is critical for patients with ILC." The radiologist must pay attention to the anatomic CT features and look for non-avid mets. It is important to use contrast for the CT. [The CT portion of a PET-CT is a poorer quality CT without contrast.] There is a problem with insurance not wanting to pay for a contrast CT and a PET scan in the same day, but same-day is the way to align the PET with the CT. [Realistically your onc can order either a PET-CT or a CT with Contrast, but I doubt on the same day.]
The doctor also pointed out that "...ILC has different propensity for metastatic spread than IDC." Therefore the radiologist should look for gastric (e.g. thickened stomach wall), gynecological, peritoneal, kidney, retro-peritoneal (could indicate kidneys and/or ureter), and other mets.
The scan request sent to radiology may simply say "breast cancer". The radiologist needs to know that the patient has ILC, so he/she will pay attention to the unusual ILC met sites and to possible differences in FDG avidity.
Bone: PET/CT is useful for imaging ILC bone mets. It is more sensitive than a bone scan, and the PET part can show bone mets that the CT can't yet pick up. However, ILC bone mets are more likely to be sclerotic and non-FDG avid than IDC bone mets. While most ILC mets are FDG-avid, about 30% of ILC bone mets are not.
Breast: PET-CT is generally not the best type of imaging for the breast, and has even worse sensitivity for less-avid ILC. Breast MRI is the best type for imaging ILC in the breast.
As ILC becomes more poorly differentiated and aggressive, it becomes more FDG-avid.
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ShetlandPony, thank you so much for the wealth of information! Your notes are very helpful. I feel frustrated that many doctors don't differentiate their approach for IDC and ILC, but at least I know some possible scans to push for now. I'll do some more research on those topics, especially about the differences in FDG avidity, which is not a term I've heard before. My MO has been pretty good about ordering tests when there is an issue, so hopefully he'll be receptive if I need some reassurance.
Thanks again, I really appreciate the info.
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I hoped and prayed I’d never find myself posting in this group but here I am - for my sister.
She and I were both DX with BC. Mine was in 2011. I had IDC, Stage 1b, Grade 1. I had a lumpectomy and 33 radiation treatments. I took Tamoxifen for 5 years. My Oncotype score was 11. 8% chance of recurrence. I will be 8 years out this month.
Unfortunately my sister who was DX in 2012 with ILC had a recurrence in 2016 at the MX scar. She had a MX and took Arimidex initially. She had all kinds of problems with being allergic to the blue dye and ended up losing one of her kidneys. It was horrible.
When she had the recurrence she had radiation treatments. She also had to have 2 shots a month.
A few months ago she had severe back pain not relieved by any pain meds. I was afraid of what that meant and sadly my fears came to fruition.The cancer has spread to her stomach which is rare. Her doctors started her chemo regimen and she has had 3 treatments but it is not stopping the progression. We are all devastated.
She and my BIL are coming to town and getting a second opinion from the West Tennessee Cancer Clinic which is where I was treated. Ditto my SIL who was also DX with BC. She will be seeing the head of Oncology. He is one of the best. We will all be there with her.
I am praying for a miracle. A friend suggested she should go to MD Anderson. Whatever it takes.
You guys are going through this. I know it’s heartbreaking. Any hope for my sister? Did anyone else get a second opinion?
Thanks.
Diane
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Hi Diane. So sorry to hear that your sister has joined the stage IV club. She really seems to be having a time of it that's for sure.
It's good that she is going for a second opinion at a dedicated Cancer care facility. There are lots of women who have gotten second opinions and have peace of mind because they did......hoping you and your sister will get the same.
As with everyone who is stage IV, your sister will find that if one treatment doesn't do good things, there are quite a few more that just might be the magic bullet.
We are all so different as is our cancers and no one knows how long we have, not even healthy people, all we can do is live each and every day the best way we know how and hope that the treatment we are doing is doing its job and controlling the beast within us.
Love n hugs to you and your sister. Chrissy
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Edwards. My second opinion was with a Breast Cancer specialist and she is the one who gave me great hope even with this diagnosis. As Chrissy mentioned there are many treatment options. I hope for the best for your sister.
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It was the Gedatolisib trial. We talked with her trials team and the oncologist and expressed some frustration with the length of time visits took and how overwhelming it felt to be at the hospital at least once a week and they allowed us to periodically take a week off. That mental break was enough to make it a lot easier for her.
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Thanks ChriissyB...The seizures are gone and were quite mild. It is thought they were from Tamoxifen. Tamoxifen can cause very mild siezures. The hallucination was looking at my clock seeing 938am and turning my head to look again and it said 10 38 am. That was the only hallucination. It is thought it was just from being overtired and in a rush. Of course not wearing my bifocals. I was told to keep an eye on my symptoms and nothing since I posted. Fingers crossed.
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