Just Diagnosed- Get Prepared
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I know I put this in here somewhere, but just in case. It's a repost of something I wrote for someone else
sassyIn case you don't have this link. It's a drug site that is great even though it was done by the government. Why is it GREAT! 1. after putting the drug name in the search box and the list is pulled up the first drug manufacturer is the one that originated the drug. 2. importance---all the pre-approval clinical trial documentation is there 3. all post marketing data is there 4. hyperlinks throughout to connect within the report for easy referencing between topics.
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These words are from Blessings 2011
- A Few Thoughts on Counseling From A Retired Counselor
No matter what kind of illness, injury, or disease we may have, it usually takes a toll on everyone in the family. If you are the person who is ill, a whole lotta junk comes with it: anger, depression, fear, guilt, you name it. And for mothers, it's even worse.
Sadly, no one ever teaches us exactly how to cope with life in the trenches... and it's only when things become too emotionally painful that we start to look outside ourselves for help.
One thing I always told my students and clients: Therapy is kind of like the kitty litter box. You can keep adding more litter to cover up the mess, but sooner or later you're gonna have to shovel some sh#t.
By that, I mean that there's a lot of fear associated with counseling... that the therapist will make us talk about things we don't want to, or that we'll have to admit to our biggest mistakes/guilt/weakness.... or that we'll start crying and never stop. The tendency is to ignore the problems and just keep pushing on.
But for me (and yes, I do see a therapist to help me stay emotionally healthy) I found that counseling was like going into a spooky dark attic and raising all the shades to let in the light. I found out there were no boogeymen hiding up there after all.
When things get bad at home, and communication breaks down, everyone starts doing this dance of avoidance, so as to not upset each other. That just isn't fair to the person at the center, as it means that their feelings must be stuffed down to create harmony. But when doing that leaves you feeling scared and alone, in my book that's more harmful than speaking up.
Dealing with kids is tricky. No secret there. My opinion - and it is only my opinion - is that if getting the whole family to therapy is too hard, just go for some individual sessions by yourself.
I would never in a million years presume to know what it feels like to have a Stage IV dx. But I do have a sense of how it feels to think I don't have forever on this earth, and that more than anything, I want to be able to communicate clearly with those I love the most.
Most breast cancer centers and most MOs have Psychologists or Licensed Clinical Social Workers on staff who are skilled in dealing with cancer patients. You can ask for a referral. If you don't click with the therapist after a few sessions, you can always change to someone else.
It's nice to have a non-judgmental ear to listen to you, give you good feedback, and valuable coping tips for dealing with family matters, and not be at all hurt when you need to vent like Hurricane Sandy.
It would be wonderful if all our friends and family members were equipped to do this for us, but they're not. So going to a professional counselor is a gift that you give to yourself. It's like mental housekeeping. I fully believe it works, and can make life so much easier when things get painful or scary.
0 - A Few Thoughts on Counseling From A Retired Counselor
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Picked up this link from April485 "How to talk to a cancer patient"
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Hi reposting this on some threads, may be old news to some, but to good of info not to pass this on,Sassy
Bluebird144…NJJoined: Apr 2013Posts: 39313 hours agoBluebird144 wrote:
Knitted Knockers Charities is a non-profit that exists to provide free patterns for knitters and crocheters to be able to make knockers and help mastectomy patients get freeKnitted Knockers made by volunteers.
I love my Knitted Knockers! They are light and soft and warm. Unlike my silicone prosthetic which is heavy and cold when first worn, then it later causes me to sweat.
I wear my knitted knockers inside a regular bra or tucked in the pocket of a mastectomy bra. They are beautiful, and a godsend to those of us with an uneven mastectomy scar.
Knitted knockers website:
http://www.knittedknockers.info/
Fall down seven times, stand up eight.
Surgery 09/09/2009 Prophylactic Ovary Removal (Both)Chemotherapy 02/06/2013 Adriamycin, Cytoxan, TaxolSurgery 07/19/2013 Mastectomy (Both); Lymph Node Removal: Sentinel Lymph Node Dissection, Axillary Lymph Node Dissection (Left); Reconstruction: DIEP flap (Both)Surgery 08/20/2013 Reconstruction (Right)Surgery 08/28/2013 Mastectomy (Right)Radiation Therapy 10/14/2013 3-D conformal external beam radiationSurgery 01/24/2014 Reconstruction: Tissue expander placement (Right)
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This piece was written from one member to another. I and others thought it was beautifully written. It was about what our friend went through with rads.
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ziggypopJoined: Oct 2013Posts: 891Mar 23, 2014 11:26AM ziggypop wrote:
Okay you little moxie filled bluebird, I am going to do something that I know I will regret and will only happen once in a blue moon - I am agreeing with Chevy (there, I said it). You are beautiful bluebird, here's the picture I have of you and it's truer to life than an photo can be because it's a picture created over time not just in a moment. So my picture, I see a woman who is tender as can be with animals, I'd guess that birds come and sit on her shoulder. She's smart and witty and funny and most of all kind. She cries, but wipes away the tears and pulls herself up and gathers her moxie to face whatever challenge awaits. She comforts others even when she herself is in pain and she laughs with a wonderful laugh that is as pretty to hear as any bird singing. She is spiritual but never preachy and draws her strength from nature and will never lose her faith or joy in the beauty of the world around her. She should never be hurt, because she never hurts others. She's got these scars, but is prettier than any perfectly plastically unflawed super model could be, because those scars only serve to remind the ones who love her of how truly beautiful she is and how blessed they are that she is there in their lives.
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posted by Smarrty March 27th, 2014
for spring, especially those back east who haven't seen it yet.
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Hi, someone asked how to make a hyperlink. This is the way my windows on an hp works:
1. Point cursor at URL/web address
2. Left click til it turns blue----index finger working side
3 Then hit clrl-c, then I move cursor away and hit till it turns white
4. Move to place you want to leave link. I usually make it the line below where I have ended typing.
like here
5. Hit clrl-v---it'll print the URL/web address.
6.This is the key that will make it hyperlink>>>put the cursor/ flashing bar at the end of the URL/web address, and hit enter. That should cause link to turn it blue. That enter is the KEY. if you don't do that, you have a url but it won't link/work.
"AH hah Watson I think I have done it"
I'm going to repost this a couple of places and see if it helps others. If you have a different system this may not work Let me know. Good Luck. Sassy
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Sassy I like the new avatar
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Bumping Over the Hump
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Bump it to the Top!
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repost of a members response to another re:scans and why they choose to do them and not do them I thought it was very good, better than what lots of docs give as an answer. Hope it helps
sassyApr 10, 2014 02:36PM ziggypop wrote:
Hi all,
Hi Ho - I'm really sorry about your friend, it is so particularly hard when someone is young.
I'm going to chime in on the scans question because it's one that I had for awhile too (at this point I'm like Cami - I told my doc I really don't want to see any docs at all for anything for at least 2 months, he said okay just get your mammo so I did and I have a callback - he wrote me and said please just do this one more thing and I will leave you alone). Anyway here's what I understand to be the case or have been told to be the case & it could be wrong.
As far as getting a PET scan at the 'beginning' - they will do one if there is a significant risk that the cancer has metastasized beyond the local area. And they do this because it will change the treatment protocolif there are distal mets. This is the basic reason for tests of any kind - to determine what treatment you should or should not have.
By far the single most predictive factor for Mets in distant locals is lymph node involvement. Fluid from the breast drains into the auxiliary nodes, so if the cancer has lodged in the node it means both that it has traveled and that it has the capacity to live in different environments. If it's not in the nodes, then the risk that it is in distal areas of the body is relatively low. So the 'standard' for pretreatment testing is the degree of lymph node involvement, there may be some other instances when a PET is done - ie. the tumor is close to the chest wall, but otherwise the increased radiation is not considered to be warranted. Exposure to radiation is a serious thing - particularly for a cancer patient because radiation has a cumlative effect and a cancer patient is likely to undergo (over a period of time) more tests that will expose him or her to more radiation than the normal person. The type of scans that one would need to determine location & metabolic activity (what you need if you're looking for mets) are PET/CT & you're talking a lot of radiation with there - a chest CT normally has the same amount of radiation as over a hundred chest X-rays.
As to having regular scans following treatment - the 'standard' is not to to do scans unless there are symptoms that suggest mets have occurred. The first reason is to limit exposure to radiation - imagine your doc telling you that he wanted to expose you to the radiation of one hundred X rays every year for the rest of your life - we're not talking Chernobyl - but that's pretty significant. Think about what RADs does to your breast tissue & how changes can occur years after. The second reason given is that it is very very rare that finding mets 'early' has a great deal of benefit. The benefit of detecting BC early is that if BC is contained to the breast, it won't kill you - because your individual breasts are not necessary for your survival. That is why surgery is the primary treatment for BC that has not spread beyond the nodes. This surgery can in fact 'cure' you (you don't know whether you have been cured or not, but there is a good chance that ALL of the cancer can be removed from your body if it has been found before spreading elsewhere). Other treatments (RADS, Chemo, AIs, SERMS) are basically prophylactic in nature - they are done to treat cancer cells that may or may not even be there. When BC metastasized to distal locations, it tends to lodge in a lot of places (although they may not show up on a scan because they are too small). So surgery is generally not the primary treatment. The primary treatment is some combo of those prophylactic treatments & the thing is that the cancer cells eventually find a way around these treatments - so the treatments have a limited time span of effectiveness regardless of when you start them. If you use up the arsenal of treatments earlier all that has really happened is that you've used it up earlier (that's how the argument goes anyway).
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Breast Cancer books!
I have 3 really good books I dont think I
need any more: BC Treatment Handbook, Judy Kneece. Tons of info, clearly
and simply given, really good.Dr Susan Loves Breast book
Mayo Clinic BC Book
all 3 are really good and have great info. These really are for someone starting down this path but ..
FREE to a good home! Im in Algonquin , NW of the City, work in Arlington Heights. If anyone is interested, get in touch.
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