Posted on: Jul 22, 2012 12:40 PM
Jerusalem Israel
Joined: Jul 2012
Posts: 43
clairejslm wrote:
Hello, I'm new to these forums.
I'm 57, a widow with no children, living alone. I was diagnosed at Stage III eight years ago, and a few years later developed mets to my spine. A couple of weeks ago mets were diagnosed on both sides of my skull, and at my sternoclavicular joint, too.
The mets to my skull has been devastating to me. It somehow is so much scarier than the mets to my spine. I know that skull mets does not spread (of itself) to the brain, but there is something very freaky about knowing the cancer is in my head. They are lytic lesions; I don't feel any bumps.
This feels so much more "advanced". I find that I'm thinking about who will help me as I become weaker (I live alone), about hospice care, about advance directives. All this, even though I am no weaker or frailer than I was a month ago or a year ago.
I don't know if it's appropriate for this forum, and I apologize if it's not, but I'd be very grateful for emotional support or contact from others who have been through this.
Thank you.
Claire
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Jul 22, 2012 12:52 PM GrandHillMom wrote:
I have skull mets, but have never been more concerned about them than my other bone mets (spine, ribs, pelvis and femurs). They are bone mets, which are treatable for a long time, as you know. They are NOT brain mets. Please do not let them upset you. You should plan for the future, but I do not believe the skull mets have significantly changed that future. Stay strong.
3/2006 (age 47) Rt: IDC, DCS & IDC, ER+PR+HER2- Stage IIIB, Lt: IDC Stag IIA ER+PR-HER2-; AC, Taxol, Bilateral Mast., bilateral radiation, Tamoxifen and megace. 3/2010, bone mets to skull, spine, ribs, pelvis and femurs, Aromasin and Zometa
tammie
syracuse, ny
Joined: May 2003
Posts: 863
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Jul 22, 2012 01:00 PM tammie wrote:
Welcome Claire!! You are very appropriate for this forum, actually from my perspective almost anythings appropriate here, i dont think theres much we dont share with each other... Its very normal to get frightened ..I was dx'ed in sept. with bone mets head to toe and liver mets 2months later.. I can fully relate to the big fear with the skull mets, of all the mets i have the 3 in my skull scare me the most!! I'm always worried any little head pain sends me reeling, recently i went through a bout of horrendous head aches and i'm sure you can imagine what was goin through my mind.. I hope your onc. has a good trick up his sleeve to get things settled back down and stop the progression.. I dont know your type of cancer or er/pr status her2 etc.. I have learned in these last 10 mo. that there are many treatments and drugs out there to help slow things down Soo dont give up hope theres probably something out there that will get things back under control... Wish I could do more than tell you your not alone and remind you we are always here to listen... As i'm sure you already know this disease is like a roller coaster ride that has far too many dips and drops that never end.. Big hugs to you and please keep us posted soo glad you joined us...Tammie
Everytime the wheel turns round bound to cover just a little more ground!!
Dx 9/7/2011, IDC, 2cm, Stage IV, 0/7 nodes, mets, ER+/PR+, HER2-
Frapp
Western, MA
Joined: Jan 2010
Posts: 1,967
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Jul 22, 2012 03:43 PM Frapp wrote:
I'm right there with you!! My initital diagnosis was stage IV with mets to bone 2.5 years ago. This past May it progressed to my liver and one of my reports at that time also metioned that something that was showing in other reports is now confirmed to be a met in the skull. That scared me more than the liver mets. I don't know why, I think its just the idea that it's in the head. I can't live without a liver either so go figure. I have seen several posts on here that mets to bone are just that, mets to bone and lets face it, your skull is a bone. That's what I keep telling myself, anyway. For now, that seems to work in keeping me calm.
Dx 12/24/2009, ILC, 6cm+, Stage IV, Grade 2, mets, ER+/PR+, HER2-Dx 12/19/2011, IDC, Stage IV, Grade 3, mets, ER+/PR-, HER2-Chemotherapy 05/24/2012 Xeloda
SonnyB
Rochester Hills, MI
Joined: Mar 2012
Posts: 495
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Jul 22, 2012 04:48 PM SonnyB wrote:
clairejlsm,
Even knowing intellectually that the skull mets are still bone mets that doesn't help with the emotional factor! Any progression is scary! Here are (((((((((((hugs))))))))))))) to help you through this emotional time and I am sure you will soon wrap your mind around this new reality.
Dx 2/8/2012, DCIS, 4cm, Stage IV, Grade 1, 1/5 nodes, mets, ER+/PR+, HER2-
Naniam
Hickory, NC
Joined: Sep 2005
Posts: 1,835
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Jul 23, 2012 12:40 AM Naniam wrote:
In May,my scans showed lots of bone progression and one was on the very top of my skull. I realize the skull is just a bone and they don't look at it any differently - but think we all think "just a little to close for comfort". I think they can become painful just like anyother bone met site. I don't think about it so much anymore - logic took over and I realized it gets to the brain by other means. If you live alone, perfectly normal to make plans but the skull mets doesn't hasten the plans you need to make.
Hugs
Dx 8/18/2005, IDC, 3cm, Stage IV, Grade 2, 0/7 nodes, mets, ER+/PR+, HER2-
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Jul 23, 2012 01:22 AM mammalou wrote:
Can I ask?? Are skull mets found with a bone scan?
Dx 1/11/2011, IDC, 3cm, Stage IIb, Grade 1, 1/9 nodes, ER+/PR-, HER2-
clairejslm
Jerusalem Israel
Joined: Jul 2012
Posts: 43
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Jul 23, 2012 09:01 AM clairejslm wrote:
Thank you so much, everyone. It is so good to know that others have had the same feelings as I do.
Mammalou, I don't know the general answer to your question. In my case, the mets in my skull are lytic lesions, meaning they cause the bone to resorb instead of creating growths. (In other words, holes in my head!) Lytic lesions do not show up on a bone scan. Mine were found on a head CT that we did to see if I had brain mets.
All will be well and all will be well and all manner of thing will be well. (Julian of Norwich)
Dx 2004, Stage IIIa, ER+, HER2-Dx 2012, Stage IV, mets, ER+, HER2-
Lynn1
Atlanta, GA
Joined: Apr 2010
Posts: 2,136
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Jul 23, 2012 09:17 AM Lynn1 wrote:
Hi Clarie! As others have said, even though it sounds scary, it's still just another bone - no different than if they found it in your arm or leg, or hip, etc. I found this out quite by surprise too and was also freaked out. I had a regular scan and the onc mentioned that I might have had some very slight progression, but it was so small that we were going to stay the course till the next scan. I always get a copy of the scan reports so when I get home and am reading it over it says I have something on my skull! What?! That was not there before. So this became a time when I was able to explain to him that I want to know EVERYTHING - even if it doesn't change things overall, I still want to know! But he did assure me that he didn't mention it just because it didn't change anything - still in just the bone. Hope this helps your fears some. HUGS!!
~Lynn ER+, HER2- Bone mets: sternum, pelvis, spine, ribs....it's everywhere. Started Navelbine 7/13/12
clairejslm
Jerusalem Israel
Joined: Jul 2012
Posts: 43
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Jul 23, 2012 09:24 AM clairejslm wrote:
Thanks, Lynn.
I've had mets in my spine for a long time, but the CT showed "a high number" of lesions in the right parietal bone, and "a number" in the left parietal. It's very scay. I haven't seen my onco yet, but my GP is going to talk to her for me to see what my next step should be.
It freaks me out that the bone in my skull is resorbing, disappearing. Our skulls are important!
I guess I'm just generally freaking out. I feel very frightened, worried about my future living alone, worried about how long I'll be able to continue working...
All will be well and all will be well and all manner of thing will be well. (Julian of Norwich)
Dx 2004, Stage IIIa, ER+, HER2-Dx 2012, Stage IV, mets, ER+, HER2-
Lynn1
Atlanta, GA
Joined: Apr 2010
Posts: 2,136
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Jul 23, 2012 09:58 AM Lynn1 wrote:
I understand. My mets are lytic too - they did not show up on bone scan and the PET scan misses them sometimes too. I try not to think about the holes in my bones - makes me think of swiss cheese or something. I just keep repeating the words of my onc -- you can live a long time with mets to bone only. So, whether they are in my hip or my skull, as long as they stay in the bone, I'm doing ok (I hope!).
I know the unknown is scary too -- living alone, working, etc. It can seem overwhelming if you think of them all at once. Maybe you could break them down into smaller "steps" and maybe they won't seem so daunting. HUGS for you!!!
~Lynn ER+, HER2- Bone mets: sternum, pelvis, spine, ribs....it's everywhere. Started Navelbine 7/13/12
clairejslm
Jerusalem Israel
Joined: Jul 2012
Posts: 43
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Jul 24, 2012 03:27 AM clairejslm wrote:
Thanks, Lynn.
Actually, just reading the responses to my posts and other threads on the board is going a long way toward helping me calm down! My "freak outs" come and go, but they are getting less frequent now. :)
Hugs are gratefully accepted!
All will be well and all will be well and all manner of thing will be well. (Julian of Norwich)