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Topic: New diagnosis for Badluck!

Forum: Just Diagnosed — Discuss next steps, options, and resources.

Posted on: May 25, 2019 08:54AM

BadLuck wrote:

My rare but easy to cure breast cancer confirmed last June was enough for me to go through & now on a 5 year treatment plan of Anastrozole. At the same time I figured the cancer was growing, I kept complaining of the left side of my facial muscles tightening, twitching & pulsating. No doctor including a neurologist had an answer. Then this year on one of my 3 month visits to my MO I insisted that my facial muscles on my left side (same side as my lumpectomy) is related in some way since they come at the same time. I told my MO that I have a strong feeling that it's a brain tumor. She insisted that it wasn't & if it was then it would effect the opposite side of my face. I started crying & told her I can't go in living not knowing what the muscle spasms are. She then sighed & asked if I wanted her to order an MRI of my head. I told her she was the doctor & I'm the patient so please listen to me & I k ow it's a brain tumor. She ordered it & what did they find?! A large mass Meningioma tumor on my meninges which covers the brain! She said most of these tumors are found by accidents & they are common. Said she would just leave it there & do nothing about it since the risk of surgery is too great. Said many people with these tumors live a long prosperous life & die of other causes. This is just my luck!!!!

BadLuck Dx 6/15/2018, IDC: Mucinous, Left, 3cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 8/30/2018 Arimidex (anastrozole) Radiation Therapy 9/3/2018 Whole-breast: Breast
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May 25, 2019 09:10AM BadLuck wrote:

So then they sent me to their neurologist specialist in central WI & although my MO told me these brain tumors are all benign (non-cancerous), the neurologist I saw told me he hates the words benign because it's misleading & "ALL" tumors are cancer! He said there are fast growing they call malignant & slow growing they like to call benign (non-cancer). Again, he told me there is no such thing as a benign non-cancerous tumor! It through me in a state of doom & gloom. List all hope to live on. All my dreams gone. He gave me an option to monitor it or have something done soon. I told him I'd choose the option to come back in 6 months for another MRI to see if it grow more. He had no answer about my left side of my facial muscle tremors & told me that it's unrelated to my brain tumor. So does anyone out there have suggestions or know if I have metastatic breast cancer that is spreading? He kind of suggested that tumors grow out of control once you get one. Anyone have hope for me? Please help me find answers

BadLuck Dx 6/15/2018, IDC: Mucinous, Left, 3cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 8/30/2018 Arimidex (anastrozole) Radiation Therapy 9/3/2018 Whole-breast: Breast
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May 26, 2019 05:54AM claireinaz wrote:

Badluck, your neurologist was so very wrong. I can't believe those words even came out of that medically-trained mouth. I'd find a new doc and fire this one, if he thinks all benign tumors are cancerous. Here's a link explaining what a benign tumor is, and it isn't cancerous. From the Cedars-Sinai Hospital doctor interviewed on the site: "Like all tumors, a benign tumor is a mass of abnormal cells. But unlike malignant (cancerous) tumors, they can't move into neighboring tissue or spread to other parts of the body."

https://blog.cedars-sinai.edu/diagnosed-with-benign-tumor/

https://www.cancer.gov/publications/dictionaries/cancer-terms/def/benign-tumor

9/29/11 ILC, 2 c. stage II grade 1, ER/PR+ HER2-, 6/11 nodes, lumpectomy, DDAC x 4, Taxol x 12, 33 rads, Tamoxifen/arimidex/aromasin, BMX/immed recon 7/3/13 "In the midst of winter, I found in me an invincible summer.” Albert Camus
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May 27, 2019 09:43PM LoveMyVizsla wrote:

Get.A.Second.Opinion! Now! Try to take what that person said with a grain of salt, until you can see someone else.

Diagnosed at 51yo Dx 10/5/2015, IDC, Right, 3cm, Stage IIA, Grade 3, ER-/PR-, HER2- Dx 10/30/2015, DCIS, Right, 3cm, Stage 0, 0/4 nodes Surgery 12/10/2015 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 1/15/2016 AC + T (Taxol) Surgery 8/10/2016 Radiation Therapy 9/6/2016
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May 27, 2019 10:20PM voraciousreader wrote:

my friend had one. She had vision changes and her eye doctor made the diagnosis. She went to a neurosurgeon at New York University Langone Hospital and had it removed. That was 10 years ago and she is doing well. It is true that in many cases, they do not operate. In some cases they do. Depending on the location and the progression, doctors will operate. That said, i would get another opinion, preferably at a Brain Cancer Center. Don’t be frightened by the title. That’s where many of the brain surgeons are located, whether you have cancer or not. And your doctor who said all tumors are cancer is wrong. What differentiates benign tumors from cancerous tumors is the ability to metastasize. That said, benign tumors can be serious. They can encroach on vital organs or cause symptoms.


Last year, I had a 5 cm benign myxoma tumor on my upper thigh that was surgically removed. An oncology orthopedist did the procedure. I never knew there were oncology orthopedists until I needed one! And I didn’t even have cancer. It was found incidentally while having an MRI for my opposite leg! Fast forward a year, I now have matching incisions on both legs. One from the removal of the myxoma tumor and one from my hip replacement. In a few weeks, I am going to have another benign tumor removed from my back. I have a lipoma tumor sticking out of my back and it is annoying me! Just when I can finally sit down, I can’t sit back because the lipoma is digging into me!


Bad luck? Nah! Just a nuisance! Good luck! Keep us posted





Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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May 28, 2019 04:45PM VLH wrote:

I echo others that you need to seek a second opinion. My sister has had a benign meningioma for many years. It was inoperable because of its location near the optical nerve. She had five weeks of radiation treatments at a Mayo Clinic. Treatment was not expected to eliminate the tumor, but rather stop its growth. She still has the visual disturbances that led to the original diagnosis, but they are no worse and scans showed no growth.

A friend's meningioma was discovered when she had a seizure. Hers was accessible via surgery. Seven years later, she's not had further issues and her scans clear. If they can cause visual disturbances and seizures, it certainly seems like they could cause facial spasms depending on the location / proximity to nerves affecting the face.

Lyn

Dx 5/20/2016, IDC, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
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May 28, 2019 08:24PM BadLuck wrote:

To Claire - thanks so much for your wise & reassuring words. My MO who sent me to that neurologist specialist is going be surprised at what I have to tell her about his tumor beliefs. I'm sure she will notify him to get his explanation to why he thinks all tumors are cancer. If he tells her what he told me, then I hope she reports him. I too believe he is so very wrong. I was so much in shock to hear those words come out of his mouth. When I walked out of there, I felt like my life was over right then & there thinking I have brain cancer! And thank you for the website links. I feel like I have some hope.

To Lovemyvizla - I will definately take what that neurologist told me with a grain of salt. How dare him to tell me there is no such thing as benign tumors and all tumors were cancer! I will be reporting him to my MO in July when I go back for my 3 month visit.

To Voracious- Thanks for your reassuring words. They did tell me that brain tumors are rare but the kind I have is the most common. Mine is on the meninges which is not in the brain (although they still call it a brain tumor), but sits on the covering of the brain. It's huge but not huge enough wear they want me to jump into surgery at this time. So far I'm not having vision problems. But I always have nasty migraines & I just know that the tumor is causing the spasms in my facial muscles on the same side of my face. Where did your friend have her Meningioma tumor in her head? I'm too scared to have the major brain surgery where they cut into my scull & shave my head! Too much risk! I've been reading a lot about Gamma knife procedure. But might have to have more radiation than that. Would you know where I could find a good brain cancer center? Or should I just contact Mayo Clinic?

To Lyn - thanks for your information on Meningioma tumors. So what kind of visual disturbances should I look for & what kind did your sister have? How many years did your sister & friend live with their tumors before they had anything done? Did your sister have any problems having all that radiation? The Gamma knife has no side effects because of very little radiation. They told me that my facial spasms on the left side has nothing to do with my tumor on the left side. They said it would affect the opposite side & never the same side, but I just know they are wrong. I know they are related because they come at the same time



BadLuck Dx 6/15/2018, IDC: Mucinous, Left, 3cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 8/30/2018 Arimidex (anastrozole) Radiation Therapy 9/3/2018 Whole-breast: Breast
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May 28, 2019 08:34PM voraciousreader wrote:

badluck...hers was close to the optic nerve and was affecting her vision. She went to NYU Langone in Manhattan because it was close to her home, i always tell friends and family to go to a University affiliated hospital close to home. Unless you have family or friends in faraway cities, go where you are familiar. What you have, while uncommon, is not that rare and there are great physicians throughout the country who can advise you.

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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May 28, 2019 08:57PM BadLuck wrote:

Voracious - they didn't tell me what my tumor would affect but I just know it has something to do with my facial spasms. They disagree saying that it would affect the opposite side. They don't even know what it is! It feels like my face is slowly becoming paralyzed in that side. My tumor is on the very top left side toward the back of my head. I'm not sure what area of the brain it will affect. Have you heard what causes these tumirs

BadLuck Dx 6/15/2018, IDC: Mucinous, Left, 3cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 8/30/2018 Arimidex (anastrozole) Radiation Therapy 9/3/2018 Whole-breast: Breast
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May 28, 2019 10:16PM voraciousreader wrote:

from what I recall when my friend had hers, generally, more women, especially older women seem to get them more frequently than men. Honestly, I am not that familar with them except to say that I accompanied my friend to her doctor meetings and brought her home from the hospital a day after the procedure. Aside from feeling tired for a few weeks, I would say she made a full recovery. She has a small metal plate in her farhead as a reminder of the procedure. As I mentioned earlier, her eye doctor diagnosed her. She loves to sew and had difficulty threading a needle. When she got a head cold and her vision problem advanced, she went to the eye doctor.who immediately diagnosed her.


Regarding the spasms, I would see a neurologist. If you have headaches and spasms, he/she should be able to advise you and perhaps sort things out....


Regarding what causes these illnesses....who knows? I would love to know why I got mucinous breast cancer, a myxoma, two lipomas and a few basal cells....one of my doctors once said that my body loves to make more things than it should...that was the closest answer I got to why....

Doctor told me regarding my prognosis that I WASN'T on the Titanic! Hmmm...Really?....Okay! 02/2010 Pure Mucinous Breast Cancer, Oncotype DX 15, Stage 1, Grade 1, 1.8 cm, 0/2 nodes, ER+ 90% /PR+ 70% HER2- (+1)
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May 29, 2019 04:35AM KBeee wrote:

I echo the others to get multiple opinions. Ask not only what they recommend, but why they recommend it. I would go to a major medical center and research the doctors beforehand. Sorry you're dealing with this, but kudos for standing up to the doc who wanted to blow it off. You knew your body and pursued answers.

Karen. Dx 8/5/2013, IDC, Right, 1cm, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 8/26/2013 Mastectomy: Left, Right Chemotherapy 9/20/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Hormonal Therapy 12/12/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 1/23/2014 Reconstruction (left); Reconstruction (right) Surgery 1/29/2015 Lumpectomy: Right Dx 2/2/2015, IDC, Right, 1cm, Grade 2, 0/0 nodes, ER+/PR-, HER2- (FISH) Dx 2/25/2015, IDC, Right, 1cm, Grade 3, 0/13 nodes, ER+/PR-, HER2- (IHC) Surgery 2/25/2015 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary; Prophylactic ovary removal Chemotherapy 3/31/2015 AC + T (Taxol) Radiation Therapy 8/25/2015 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy Femara (letrozole)
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May 29, 2019 07:02AM BadLuck wrote:

It seems that we all have to do our own homework & research on our symptoms & try convincing our doctors what we have. My brother in law went to an eye doctor & that doctor saw something abnormal & sent him to a neurologist. They found brain cancer. I went to an eye doctor to find out why my eyelid wouldn't stop twitching & pulsating & told her about my brother in laws findings. I told her it started at the same time as my breast cancer last June & I know they are related. She did all kinds of test & said my eyes are fine & couldn't see any problems. Referred me to a neurologist who said everything looked fine & didn't know what could cause the facial spasms & twitches & my eyelid can go on twitching for the rest of my life. I told my MO that she was my last hope in finding out what was going on. Thank God she's believed me & ordered the MRI. Which found the brain tumor but still don't know what is causing the facial spasms which now seemed to settle in my cheek area.

BadLuck Dx 6/15/2018, IDC: Mucinous, Left, 3cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 8/30/2018 Arimidex (anastrozole) Radiation Therapy 9/3/2018 Whole-breast: Breast
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May 30, 2019 12:07PM VLH wrote:

Badluck, you asked: "So what kind of visual disturbances should I look for & what kind did your sister have? How many years did your sister & friend live with their tumors before they had anything done? Did your sister have any problems having all that radiation?"

If you haven't noticed anything significantly different in your vision, your particular meningioma probably isn't affecting the optic nerve. An MRI should show the location of the meningioma relative to the optic nerve. My sister had no long-term side effects from the radiation. I don't recall the exact timing of her treatment relative to the radiation treatments. our other sister lives near a Mayo Clinic so there were a number of logistical issues to address so it certainly wasn't the next week. My friend had surgery quite quickly. Remember that she had a seizure so there was a greater sense of urgency. Further, she lives in a major metropolitan area with access to top specialists without having to travel.

Although it is possible that the tumor is related to your facial spasms, the timing could be coincidental. When I was in my 20s, I suddenly had facial paralysis and numbness on one side. I couldn't purse my lips to spit out toothpaste or drink from a straw and my smile was crooked. I went to the ER and was diagnosed with Bell's Palsy, a condition affecting facial nerves. My problem resolved on its own, but I subsequently met a woman whose surgeon accidentally damaged her nerve during oral surgery and her paralysis was, sadly, permanent. I'd had no dental work so no idea what caused my Bell's Palsy. I share this story just to show that weird facial symptoms can emerge that are unrelated to tumors. I hope you can find a cause that can be corrected.

Lyn


Dx 5/20/2016, IDC, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
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Jun 2, 2019 06:52AM BadLuck wrote:

Lyn- I just found this article on Brain Meningioma's. I also wasn't told what kind I have! Just that it was on the meninges.

Meningiomas are named according to their location (Fig. 1) and cause various symptoms:

Posterior fossa meningiomas;

  • Posterior fossa meningiomas: grow along the underside of the brain near the brainstem and cerebellum. These tumors can compress the cranial nerves causing facial symptoms or loss of hearing. Petroclival tumors can compress the trigeminal nerve, resulting in facial pain (trigeminal neuralgia) or spasms of the facial muscles.
  • So you are very correct in saying my facial muscle spasms are related. I also thought of Bells Palsey going on or also having my molar recently removed by a terrible misunderstanding that I had to have it pulled rather than a root canal before my radiation. Unfortunately no doctors have an answer for m
BadLuck Dx 6/15/2018, IDC: Mucinous, Left, 3cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 8/30/2018 Arimidex (anastrozole) Radiation Therapy 9/3/2018 Whole-breast: Breast
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Jun 4, 2019 08:33AM BadLuck wrote:

To all my friends who have responded to my questions and given me suggestions and answers. Thank you all so much! They didn't tell me what type of Meningioma my tumor on my meninges was and never told me depending on the location of them they have names for them. They keep telling me that because mine is in the left top side of my head, if I had any problems that it would only affect my "right" side only. I did my own homework & found out there are 10 different brain tumor Meningioma's. So far I have had increasing headaches, especially in the morning when waking up, sometimes visual disturbances such as blurred vision occasionally, and worst of all, the weird muscle spasms, tremors, twitches & stiffness on my left side of my face that is increasing each da. My Meningioma measures 2.44cm. To me when I look at the brain scan it looks massive!

I have to have another MRI in November to see if it grew more. I would like each one of you girls opinion on what you would do if you were me? Do the wait & see thing? Have the Gamma knife procedure? What hospital - Mayo? My MO told me she would just leave it there and not do anything if she were me. It was like she was telling me that the risk of doing anything was greater than just leaving it alone. Also, is it safe to keep being injected with that contrast before the MRI??? How many times is too much?

BadLuck Dx 6/15/2018, IDC: Mucinous, Left, 3cm, Stage IB, Grade 1, 0/2 nodes, ER+/PR+, HER2- Hormonal Therapy 8/30/2018 Arimidex (anastrozole) Radiation Therapy 9/3/2018 Whole-breast: Breast
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Jun 5, 2019 03:56PM VLH wrote:

BadLuck, perhaps you can get a copy of your MRI results to see if it identifies the specific tumor type? A breast cancer forum is not the best place to get the kind of answers you're seeking. I shared a couple of incidents with my family and friends to reassure you that a meningioma is not as frightening as it might initially seem, but I am no way qualified to opine on treatments or medical facilities. I'm sure it's frustrating for you not being able to get effective treatment. I hope that your future research proves more fruitful.

Lyn

Dx 5/20/2016, IDC, 2cm, Stage IIB, Grade 3, 0/3 nodes, ER-/PR-, HER2- (FISH) Surgery 7/14/2016 Lumpectomy: Left Dx 7/18/2016, DCIS, Left, Stage 0, Grade 3, 0/3 nodes Surgery 7/25/2016 Lumpectomy: Left Chemotherapy 10/9/2016 AC + T (Taxol) Radiation Therapy 9/4/2017 Whole-breast: Breast
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Oct 9, 2019 06:25AM teaka123 wrote:

BadLuck , Do you have someone that goes to your medical appointments with you or do you go alone. I would suggest you have someone attend these important appointments with you. They can be a second set of eyes, ears and take notes for you. When you are the patient and physically and emotionally involved it is often hard to keep everything the doctor does and doesn't say straight.

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Oct 9, 2019 11:43AM Yogatyme wrote:

Badluck, so sorry you are having these issues and hope you find some answers and relief soon. As for your questioning whether this may be Bells Palsey, my brother and a friend both have had It and they both looked like they had had a stroke. All the muscles on one side of their face became slack and their eye didn’t blink. Had to tape eye shut to sleep. It doesn’t sound like this is true for you. If you are anywhere near a Mayo Clinic, I would highly encourage you to go there for evaluation. When I was a young woman I had treatment there and it was remarkable. After 41 yrs they still follow up w me yearly as to my current health. Best of luck with your care/treatment.

Yogatyme Surgery 3/3/2019 Prophylactic ovary removal Dx 7/19/2019, IDC: Papillary, Right, <1cm, Stage IA, Grade 2, 0/5 nodes, ER+/PR+, HER2- Surgery 8/13/2019 Mastectomy: Left, Right

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