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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: Dural (Brain Lining) Mets

Topic: Dural (Brain Lining) Mets

Forum: Stage IV and Metastatic Breast Cancer ONLY — A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only or those posting on behalf of a Stage IV patient. There is a separate forum for Stage IV Caregivers/Family in "Support and Community Connections".

Posted on: Jan 16, 2013 06:50PM

Blossoms wrote:

Hi Everyone,

Seems like I continually get bad news.  After the removal of the tumor on my chest wall, I started getting extremely bad headaches.  I had an MRI on January 9th, and it shows I have thickening of the dural lining of the brain.  I am so confused.  The radiation oncologist said this is not typical.  The mets are not in my brain, nor will transfer from the lining into the brain.

The radiation oncologist says I need treatment to relieve the pressure.  She will be targetting a 3x3" area.  What I am really upset about is I will loose my hair from radiation, and I will  essentially have a permanent bald spot. 

Are there any others out there that have had this dural thickening?  I am confused because my radiologist says it's not typical.  They do not have a large database to draw from as to how effective radiation treatment will be.  I have a call into my medical oncoligist to ask if it would be better to start a chemo therapy instead.  He recently took me off Arimidex because it obviously not working.

I can not believe how much bad news I continually get.  I keep asking why does this have to be in my head because the headaches started to become unbearable.  I am now on Percoset/Oxycoton and a steroid anti-inflammatory to control inflammation and the pain.

We were looking forward to going on our vacation to Hawaii from Jan.24 - Feb.8th, but now it will be a fog, because I have to take so much pain med to control these pressure headaches.  I am afraid I won't last the year at this pace.  My radiation oncologist is confident that treatment will be effective and there's a 95% chance that it will not come back in this area.  Has anyone else had radiation on their head?  Has it been effective?  She says 70% will have less pain after treatment, 20% will have temporary increased pain due to treatment, but will subside.

I am so scared.  I want to get these pressure headaches shut-down, but I am worried it will not help at all.

Any advice anyone has would be greatly appreciated.  I hoped to have many years left, but at this pace it doesn't look good.

Wishing everyone the best of health, and many, many years more.

Take care,

Blossoms

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Posts 1 - 12 (12 total)

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Jan 16, 2013 08:04PM kayrnic wrote:

((((((((Blossoms)))))))))). So sorry for the bad news, but the docs seem optimistic and that is usually a good thing. Crossing my fingers that this is just another hill to get over!

Kay ---bone mets

Dx 11/14/2001, IDC, 2cm, Stage IIa, Grade 2, 0/9 nodes, ER+/PR+, HER2-Dx 3/9/2012, IDC, Stage IV, mets, ER+/PR+, HER2-
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Jan 16, 2013 08:18PM, edited Jan 16, 2013 08:19PM by KeepingFaith69

((((Blossoms)))))
Sorry to hear that you have more pain.
I pray that it will pass with ease.
It's a great sign that your dr is optimistic. Hang on to that.
Thinking of and praying for you.
Pae xo

Pae xo. I surrender to God and the Angels and I choose PEACE.

Dx 8/16/2010, <1cm, Stage 0, Grade 3, 0/13 nodes, ER-/PR-, HER2+Dx 12/31/2012, Stage IV, ER-/PR-, HER2+Chemotherapy 01/01/2013 XelodaTargeted Therapy 01/01/2013 Tykerb
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Jan 16, 2013 08:54PM chris1959 wrote:

blossoms so sorry you are going thru this will keep you in my prayers . god bless chris

Dx 10/2011, 5cm, Stage IV, 23/30 nodes, mets, ER+/PR-, HER2-Surgery 10/27/2011 Mastectomy (Left); Lymph Node Removal: Axillary Lymph Node Dissection (Left)Chemotherapy 11/05/2011 AbraxaneHormonal Therapy 09/03/2012 TamoxifenSurgery 02/19/2014 Prophylactic Ovary Removal (Left)
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Jan 17, 2013 05:39AM bhd1 wrote:

Oh blossoms I am so sorry. I have been looking for your posts about the surgery and wondering how u felt after that. Now this. I hope u get it resolved andthe bad news stops. How does your arm feel ?

barb

Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Jan 18, 2013 01:03PM Blossoms wrote:

Thank you for replies. I am in shock about all this. I have been trying to research the net about effectiveness of radiation on dural mets, but can not find much. The good news is my surgeon was excellent and I have no pain at all from the rib scrapping and removal of minor pec muscle. Thanks for asking, Deb.

I sure wish I could hear from someone who had focal radiation for brain mets. I would just like to know how effective it might be. I am really scared. But the headaches are fairly bad, so I need to do this. They tell me surgery is not an option because the dural thickening is into the Venus sinus where cerebral fluid and nerves run between the two hemispheres run :-(.

Thank you for sending prayers. I really need as many as everyone can spare.

Take care,
Blossoms

Dx 5/22/2009, IDC, 2cm, Stage IIb, Grade 3, 2/18 nodes, ER+/PR+, HER2-Dx 8/28/2010, <1cm, 0/0 nodes, ER+/PR+, HER2-Dx 6/26/2012, 1cm, 1/1 nodes, ER+/PR+, HER2-Dx 8/20/2012, IDC, Stage IV, Grade 3, mets, ER+/PR+Chemotherapy 08/20/2009 Cytoxan, Ellence, fluorouracil, Taxotere
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Jan 18, 2013 02:56PM LuAnnH wrote:

Blossoms, sorry to hear of your news and the headaches this is causing you.  Unfortunately I cannot help with the rads for the dural lining.  Overall rads for anywhere in the head is usually effective and from the percentages your doc gave you it seems it is true for this also.  Will you be able to hide the bald spot with your hair?  I'm guessing in my mind it will be around the base of the back of the skull.  I have no idea why I assume that but it is what I am picturing in my mind.  With that thought process I could see your hair covering the spot in the back without it being obvious.  Heck I could be way off base.  Don't you love to see me ramble on and not know what I'm talking about.....  Hope it made you smile!  :)  (((HUGS)))

LuAnn --

Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Jan 18, 2013 05:39PM Blossoms wrote:

Hi LuAnnH,

Thanks for the note. I got a chuckle from it. Unfortunately the treatment will be across the crown at the back of my head. There will be no way of hiding it unless wearing a wig. Oh well, I guess I can get some pretty nice wigs. Since it will be permanent, I am thinking of getting a natural hair wig instead of a synthetic one, but cost is huge. I hear $2000 for real hair. Yikes.

Take care,
Thanks for posting.
Blossoms

Dx 5/22/2009, IDC, 2cm, Stage IIb, Grade 3, 2/18 nodes, ER+/PR+, HER2-Dx 8/28/2010, <1cm, 0/0 nodes, ER+/PR+, HER2-Dx 6/26/2012, 1cm, 1/1 nodes, ER+/PR+, HER2-Dx 8/20/2012, IDC, Stage IV, Grade 3, mets, ER+/PR+Chemotherapy 08/20/2009 Cytoxan, Ellence, fluorouracil, Taxotere
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Jan 19, 2013 06:58PM justjudie wrote:

I'm so sorry, Blossoms. You have already been through so much. I hope they will be able to get this under control. You are definitely in my thoughts and prayers. Many gentle hugs to you.


Judie

Dx 3/31/2010, IDC, Stage IV, mets, ER+/PR+, HER2-
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Jan 19, 2013 08:51PM Blossoms wrote:

Thank you, Judie. Its nice to hear kind words from everyone. Radiation Dr. Hopes to get me 6 months of progression free time. Here's hoping she is wrong and it turns out to be 6 years of progression free.

:-).
Blossoms

Dx 5/22/2009, IDC, 2cm, Stage IIb, Grade 3, 2/18 nodes, ER+/PR+, HER2-Dx 8/28/2010, <1cm, 0/0 nodes, ER+/PR+, HER2-Dx 6/26/2012, 1cm, 1/1 nodes, ER+/PR+, HER2-Dx 8/20/2012, IDC, Stage IV, Grade 3, mets, ER+/PR+Chemotherapy 08/20/2009 Cytoxan, Ellence, fluorouracil, Taxotere
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Jan 19, 2013 09:56PM LuAnnH wrote:

Do you know how much insurance will cover of the good wig?  I think Fitztwins splurged on a good wig and said it is worth the cost of splurging.

LuAnn --

Dx 7/2/2006, IDC, 2cm, Stage IV, mets, ER+/PR+, HER2+
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Jun 28, 2013 05:20PM leelee67 wrote:

Hi Blossom. I was just told that I have thickening of the brain. I had a neck injury in 2009 where i fell and pinched a nerve in my left side and about three months ago started to get really bad head aches. My doctor sent me for a CT scan and it showed up. I have now gone for a MRI and am waiting for the results. i have no idea what to expect. do you know of any other causes for this to happen?

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Jun 28, 2013 06:14PM exbrnxgrl wrote:

Leelee,
I sorry to tell you this but blossoms passed away in late April. You might want to check out some other brain mets threads to help with questions or concerns. Wishing you the best.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur

Dx 7/8/2011, IDC, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2-Surgery 09/07/2011 Mastectomy (Both); Lymph Node Removal (Left); Reconstruction: Breast implants (permanent) (Both)Radiation Therapy 11/15/2011 ExternalHormonal Therapy 11/21/2011 Arimidex