HER2 Brain Mets Risk
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Ben, I agree that it is probably just secondary to systemic treatment just allowing CNC disease to reveal itself whereas before things would have collapsed sooner. Here is the article link though and I have read mention that there seems to be a relationship that might be heightened more than just correlation -- though it doesn't make sense to me.
http://www.breast-cancer-research.com/content/8/4/r36
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Thank you for sharing your story, Agness.
I think it is very easy for us as patients to feel restricted to tests permitted by our oncologists and insurance companies. My number one concern is metastasis and it is a very real possibility for all of us HER2+ women. For this reason, shortly after my diagnosis, I negotiated MRI prices with a local imaging center. When chemo ends, I will go for MRIs a few times per year, paid out of pocket, in order to secure my own peace of mind. This is my way that I'm taking my health into my own hands, even though my MO argues that it won't increase my overall survival. Let's see. Technology is better now than it was before. I'll take that challenge and the risk of cost.
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Finally I have come across some great info! I was having neck pain on the right side. I had a cervical spine xray done that showed neck spasms. I've been having neck and head pain for months. It has gotten worse. Yesterday I was nauseous and just felt terrible. I haven't pushed for a brain scan but now I feel I must. My head constantly seems to be aching. I just want to feel better. I am so afraid of it spreading and not catching it in time. I am living on ibuprophen. Thank You.
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Sweetune - sorry you have been experiencing so much pain. I hope the information helps you to get a whole brain MRI; it is crazy that they stop so low when for HER2 patients there is a risk to the central nervous system.
Fingers crossed that it is nothing but if it is, know that you will find good support from the brain mets sisters.
((hugs))
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I've been collecting bits and pieces to try to understand relative risk. These are from newer studies for the most part, though some were quite small which can skew the outcomes. If folks want I can track down all of my citations, I just didn't keep them as I was collecting just facts.
LC, LM - is Leptomeningeal metastasis/cancer
CNS - is central nervous system
Secondary Brain Cancer Stats for HER2 Patients
About 10% to 15% of patients with [any] cancer will have a single brain metastasis.
LC occurs in about 5% of all cancer patients. The most common types of cancer to spread to the leptomeninges are:
- Breast tumors (35%).
In a retrospective series of 38 patients with metastatic breast cancer and LC, the proportion of LC cases varied by breast cancer subtype:
- Human epidermal growth factor receptor 2 (HER2)-positive (26.3%).
The median overall survival in those with breast cancer and CNS metastasis is 9 months, with a one-year survival rate of 20. [these odds might be different and changing now, keep that in mind but don't rest on your laurels]
Those that are hormone receptor negative are 4 times more likely to have CNS metastasis.
Those with ER/PR negative HER-2 positive tumors were most likely to develop CNS metastasis (14.3%)
Overall, LM likely comprises about 11-20% of CNS metastasis [for breast cancer brain mets patients]
Cranial neuropathies or back pain due to involvement of spinal nerve roots is a common finding.
In the appropriate clinical context, findings suggestive of LM on MRI are adequate to initiate treatment of LM even in the absence of a positive CSF cytology. [if they don't find circulating cells the first draw they should check twice more was advised by a HER2 researcher, they might be catching disease progression late]
Approximately 10% of breast cancer patients will develop cerebellar mets. 73% [of a very tiny study group] of HER2 patients treated with Herceptin had the cerebellum as the site of the first metastasis.
HER-2 status does not appear to impact overall survival from LM, but treatment with trastuzumab was associated with a significantly longer time to the development of LM (15.2 versus 9.9 months)
Individual case reports and case series have shown that IT trastuzumab may have some activity in HER-2 positive breast cancer LM and is potentially well-tolerated.
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sorry to be bumping this, but I'd found this thread when I was looking for info on possible symptoms of brain mets and found it very helpful and so thought I'd contribute.
TL:DR listen to and be aware of ourselves. It can take some insistence, but if you know something's 'off,' push to get it checked out. If it's nothing, you've spared yourself the agony of worry and doubt; if it's something, you can get on it asap.
Full version:
I was diagnosed stage IV from the start 1/2014 -- her2+, a few small mets to liver. Taxotere, herceptin & perjeta did it's trick and got me to no evidence of disease - some called it PCR, complete radiographic response, and more - PET, MRI (liver & brain) showed up absolutely clean, and it was fabulous.
Since dx, I'd had 2 brain MRIs (one at dx, one 8 months later) due to headaches, tinnitus, blurry vision - both were negative. I've heard about the "low threshold" for brain MRIs for HER2+ (extra risk points if you're premenopausal, btw) from various MOs.
Last month, "new" vision issues appeared. I'd had bouts of blurry vision for awhile but after clean brain MRIs, they attributed it to drug SEs. Now, very sporadically, wherever I was trying to focus my sight would become completely blurry. For example, when looking at the face of my watch - I could see everything but the details on the face. This would last 5-15 minutes and then pass. Very bizarre. Happened two days in a row, then not again for nearly two weeks. No rhyme or reason. MO said she'd never heard of anything like that but wanted brain MRI to be sure nothing was missed. We were all confident it would be negative & I had an appointment set to see the ophthalmologist.
No such luck - MRI found 2 small brain metastases. It's unbelievably disappointing and frustrating, but seems the best thing we can do is listen to, and be aware of, ourselves. "Funny" part: while it is possible, they really don't 'feel' the mets are causing the new bizarre vision issue. Only time will tell.
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Bummer on the brain mets diagnosis. Thanks for sharing.
The HER2support.org discussion boards have more brain mets info that you might want to check outif you haven't been
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I finally found a similar case from Japan. I am not able to see what chemo protocol she was on but it was prior to Perjeta being released and her brain metastasis showed up during adjuvant Herceptin treatment.
Early-onset brain metastases in a breast cancer patient after pathological complete response to neoadjuvant chemotherapy.
http://www.ncbi.nlm.nih.gov/m/pubmed/24222158/
They don't have a standard of care established because this is something totally new with TCHP. The drugs are too new and we are the first ones using Perjeta with Herceptin in early stage disease.
Note that the ASCO HER2 brain mets recommendations issued last summer say this:
"On review of the available evidence, the ASCO expert panel concluded that the majority of the evidence was insufficient to inform evidence-based recommendations for a traditional ASCO clinical practice guideline.
Thus, the recommendations were developed by a multidisciplinary group of experts and reviewed by a consensus ratings panel including radiation oncologists, neurosurgeons, members of the ASCO Breast Cancer Guidelines Advisory Group, and others using a formal consensus process based on the best available evidence and clinical experience."
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I really appreciate this discussion thread. As a stage 4 triple positive who has been NED for over 7 years thanks to herceptin, brain mets is my biggest fear but so far no symptoms indicating a need for an MRI. I am taking these supplements in the hope that their reported anti-tumor properties and ability to pass through the blood-brain barrier will provide some protection: curcumin with bioperine, before breakfast green tea extract with quercetin
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Reading through so many responses and seeing how many times the doctors ignored the symptoms is worrisome. Two years after my mastectomy, I was dealing with my first recurrence and getting nowhere with my oncologist. I left him and went to Cancer Treatment Centers of America in Philly. In three days I had every type of scan and test available with same day results. I have always had PET/CT scans every three months, and MRI of brain every 6 months. That is their routine schedule. That is how they discovered my brain mets last February.
Demand more frequent scans. Doctors work for you, not the other way around. You are paying them and deserve the best of care. Do not settle for lazy, laid back docs who tell you its nothing. You are your best diagnosis. Dont question that niggling feeling that something is wrong. It's your body telling you something is wrong!
Barb
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Hi Barb, you are so right, WE know when something is wrong. Unfortunately, statistics do not show higher survival rate with MRI screening, so it's all up to us to report our symptoms, but even that can go wrong.
Right after I finished rads in August 2014, I started to have double vision. My MO sent me immediately for a brain MRI, which was clear, so then he sent me to a neurologist who diagnosed myasthenia gravis. That was fine and well, but by June, I had severe fatigue, depression, problems concentrating, problems speaking, and facial palsy. It did not look like MG anymore, and both my neurologist and a consulting neurologist thought it was psychosomatic. Gee, thanks!
In September, I was even worse and lost my appetite. I knew the neurologist was no help anymore, so I asked my PCP to test for neuroborreliosis, or late stage Lyme disease, to see if that would explain my symptoms. I wanted to exclude other causes before I went back to the oncologist.
In early October, I told my PCP I had a morning headache for a week. He said it was a migraine. I thought I would wait until the next week to see if the headache got better and get the Lyme test before I went back to the MO to ask about brain mets, but I never made it. That Sunday, my son called the ambulance for my killer headache and vomiting. After the CT, my old pal the neurologist came in (on a Sunday!) to say I had a brain tumor.
In all that time that the doctors scratched their heads and I was too afraid to tell them what to do, the tumor got so big that it had to be surgically removed. I am so incredibly thankful that was even possible! Now, without that tumor, my fatigue and depression are GONE. Interestingly, the facial palsy, which I had hoped would be the cue to get an MRI (but was totally ignored), is better but still there.
Looking back, my big mistake was to be hesitant to go back to my onc and counted on other doctors to make the referral. Now I understand that these doctors do not understand THE RISK OF BRAIN METS IN HER2 PATIENTS. The moral of this story is:
If you feel something is wrong, TELL YOUR ONC ! ! !
Please. It's your life at stake.
Edit: Come to think of it, I was at the MO twice during this time. The first time he thought fatigue was MG - fair enough. The second time was because a neurologist suspected leukemia. The MO saw the facial palsy and still said nothing. Stupid me, I should have said something, that was my chance.
Don't make the same mistake. The oncs follow procedures that are meant to apply to every person, symptomatic or not, but if you feel something is wrong, trust your gut and SPEAK UP!
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I would add that you shouldn't assume that it isn't cancer, even if you are diagnosed with something else plausible. Push for your oncologists to rule out cancer.
I had to set my new MO straight that I had little to do with my misdiagnosis and that I wasn't self-diagnosing, rather my situation was ignored by my MO plus I was never warned of the risk of central nervous system progression even in light of a pathologically complete response to chemo.
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Thank you for all this great info, Agness!
A few questions from me...
1) What are good complementary treatments for the prevention and treatment of brain mets?
2) If one has a PET that scans the entire head, is the brain scanned as well or is it just the skull?
3) Can one have a seizure that doesn't act like a seizure?
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You unfortunately can't really prevent HER2+ brain mets. The cells have an affinity for the environment of the central nervous system which is a) protected and b) glucose-rich. The best hope is to have the disease not pass over into the CNS to begin with.
I am employing metabolic knowledge in my fight against HER2+ brain mets in that I have switched to a strict ketogenic diet with very low carbohydrates, testing my pee to make sure my blood sugar stays low, and eating lots of fat and extra protein. This shifts the CNS environment to be based on ketones instead of glucose and the cancer cells can be made really uncomfortable this way. I met someone online who had 3 months of rapid tumor growth until she switched to a keto diet and her tumor stopped dead in its tracks. Most people aren't willing to go to these extremes and it hasn't been studied really. When I get scanned at the end of December we will know more about whether the theory holds for leptomeningeal disease with IT Herceptin.(2)
A PET scan should be able to see disease that is beyond microscopic. My recent PET scan showed that my body has no cancer in it except for a patch on the outside of my right cerebellum. The PET is a metabolic test where radioactive glucose is scanned for high utilization in the body, they even have you do a ketogenic diet and fasting leading up to the scan to help utilize the cancer cells affinity for glucose.
If you have any neurological symptoms then you can request a whole brain MRI which uses gadolinium contrast and takes a while in a loud machine. I've had a bunch of those done since the summer. The last one was more detailed as they were trying to be more definitive about my diagnosis, they checked 1) contrast uptake, 2) blood flow and recruitment, and 3) metabolic activity between an area in question and one that appears biologically normal. The last test was very revealing about how off the brain cells can be and its amazing that they can even do that.(3)
A seizure that isn't a seizure? Did something happen? There can be other causes of seizures besides brain mets but usually one would be able to identify a cause. Tell us more.
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1) I've been interested for awhile about the role of insulin resistance and BC. My blood sugar is fine but I do have a sweet tooth and my mom has Type 2 Diabetes and BC so I've wondered. I think I will look more into it.
2) I had a PET that covered my head at dx, so I felt confident that my brain was clear at dx. But then I read that PETs are useless for brain mets. I've been thinking about asking for a scan since it's been two years, but I'm uncertain if I should ask for a PET or brain MRI
3) I've had some tingling and such in my surgery arm that seemed to be mild lymphedema but I also read can be a sign of tiny seizures? It seems like seizures can be really mild and you might not even recognize one. I'll be consulting with my onc about whether to be concerned.
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Abstracts from the SABCS last week... T-DM1 (Kadcyla) and brain mets...
http://www.abstracts2view.com/sabcs15/view.php?nu=SABCS15L_558&terms=
http://www.abstracts2view.com/sabcs15/view.php?nu=SABCS15L_1048&terms=
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More info:
If you have HER2+ or TNBC with nodal involvement your risk of developing brain mets as the first site of metastasisis much higher. Standards for screening of brain mets, even with a low barrier, is not enough of of an edge for patients -- our diseases grow rapidly during the first two years. Waiting for symptoms of brain mets is far too late, patients in these high-risk groups should be screened aggressively for the first two years to catch early disease progression.
Standards were established for breast cancer brain mets were established years ago, designed to lessen insurance payments and wait and see. In my experience they do not know what they are looking for in neuro tumor boards and patients are put at a huge disadvantage. A low barrier is not enough, these at-risk patient populations should be dealt with separately, based on current knowledge of disease progression.
Fight and lie if you have to for screening
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last scan shows radiation in September worked. No new tumors and others are stable.
Now monitoring a cyst I didn’t know about that is now fluid filled and huggers. Will rescan in 2 months and if bigger or changed in shape, it will be surgically removed. Really hoping to skip that.
Overall great results.
Happy holidays. 9 years and still standing
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hello everyone, my hands are shaking. And I am sick to my stomach as I type. I just finished a long 1 year of Her2 treatments and started Tamoxifen since Sept 2021. My scalp has been quite sore for a few months now and was told that it was probably the hair coming back. It’s been almost 10 months after TCHP and 2 months since last HP treatment and the scalp pain is still there and happens more when I lie down on some days. I perfectly fine when I am awake.a few years ago before diagnosis I had pain down my left arm which they said was due to a bulge in the neck and was given steroid shots. This resolved the pain and weakness. Since chemo, the palm now becomes numb after warm showers. Pain around the thumb comes and goes from time to time.
I told my MO about this and they want an MRI brain due to Her2+ cancer. What are the typical symptoms of brain Mets? Are there any treatments? Ugh, I was looking forward to starting my life again and the worry seems to never end! Does Tamoxifen cause any scalp pain or headaches?
Any input will be helpful0 -
hopeful- I had no symptoms of my brain Mets. I will go
I’ve you this hope, I have lived with brain Mets since Dec 2012. The diagnosis sucks but I’ve been living with them for so long I have seen the drugs and radiation used to control them come into being snd control mine. Thinking about the diagnosis is scary but you can live with brain Mets.
I hope that your brain is clear.
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- leftfootforward- thanks for your quick response. That is very encouraging. How did you get diagnosed without symptoms? I need to see my little girl get through college.
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Hopeful - sounds more like CIPN (chemically induced neuropathy) or even trigger thumb.
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I didn't know the link either. Googled and found this
Conclusion
In summary, a higher incidence of BM was associated with prior taxane treatment in both a patient cohort and a murine mouse model. We could identify tubulin family members and tetraspanin-2 as potential contributors for the destabilization of the blood-brain barrier. Further analyses are needed to decipher the exact role of those alterations on tumor metastatic processes in the brain.
It still sounds like a theory that needs to be researched more but giving an uneasy feeling *sigh*
EDIT: sorry i was reading the thread and seen ben5's question at the end of first page, then thought I'd help with that. I think it was posted years ago and isn't relevant anymore, still I will leave this study here for others who might be asking the same.
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