Aa
an update
Hello :-)
I hope you guys are not fed up of my writing here in the forum ;-) always somethings im wondering about...
My doc from Oslo called me yesterday, going to an MR in the big city on wed, and talking to my doc about the operation. My GM is very bad at the moment, its just a open flesh and my doc wants to do surgery in a few weeks, I have loads of thoughts about living with one breast for a year ( they want the skin to grow before they make me a new one) But after these months with GM, and no improvement I look forward to get back in my normal shape.
Half of my breast is now open and it wount grow.. and now the hole breast is hard as an football.
Anyone who knows about pains after surgery?
I really hope all of you are doing better now and that I will be OK soon. I will let you know how it goes.
Best wishes from Norway.
I hope you guys are not fed up of my writing here in the forum ;-) always somethings im wondering about...
My doc from Oslo called me yesterday, going to an MR in the big city on wed, and talking to my doc about the operation. My GM is very bad at the moment, its just a open flesh and my doc wants to do surgery in a few weeks, I have loads of thoughts about living with one breast for a year ( they want the skin to grow before they make me a new one) But after these months with GM, and no improvement I look forward to get back in my normal shape.
Half of my breast is now open and it wount grow.. and now the hole breast is hard as an football.
Anyone who knows about pains after surgery?
I really hope all of you are doing better now and that I will be OK soon. I will let you know how it goes.
Best wishes from Norway.
Hi Lill:
I would buy NON STICK sterile bandage pads from the pharmacy and use medical tape to secure on my breast. I could not use guaze as it would become stuck to my wound and hurt like !!!!!! to try to get off at the end of day - I also used an antiobiotic ointment as well, Neosporin we have here in Canada.
jo
I would buy NON STICK sterile bandage pads from the pharmacy and use medical tape to secure on my breast. I could not use guaze as it would become stuck to my wound and hurt like !!!!!! to try to get off at the end of day - I also used an antiobiotic ointment as well, Neosporin we have here in Canada.
jo
Hi Lill,
I'm so glad you talked with another doctor and they are willing to consider methotrexate.
This is what I do for a castor oil pack:
I take a square piece of clean cotton or linen. I put about two tablespoons of castor oil on it. This is called a castor oil pack. I put it on my breast where it hurts or is leaking or needs to open up.
The I take a heating pad that I bought at the drug store- you can get the heating pads that people use for back pain- it's electric and plugs into the wall. I usually wrap the part of the heating pad that will be touching the castor oil pack in some plastic wrap (like a plastic bag) so that the oil doesn't leak all over the heating pad. Then I turn it on, and put it on top of the castor oil pack so that it heats the oil as well as warms the breast. I leave it like that for as long as possible- 30 minutes is good, or longer. It really does help. I have found that sometimes my breast leaks more afterwards, or an area opens up that needed to open up, and then I feel relief.
I hope this helps. Enjoy your holiday!
Miriam
I'm so glad you talked with another doctor and they are willing to consider methotrexate.
This is what I do for a castor oil pack:
I take a square piece of clean cotton or linen. I put about two tablespoons of castor oil on it. This is called a castor oil pack. I put it on my breast where it hurts or is leaking or needs to open up.
The I take a heating pad that I bought at the drug store- you can get the heating pads that people use for back pain- it's electric and plugs into the wall. I usually wrap the part of the heating pad that will be touching the castor oil pack in some plastic wrap (like a plastic bag) so that the oil doesn't leak all over the heating pad. Then I turn it on, and put it on top of the castor oil pack so that it heats the oil as well as warms the breast. I leave it like that for as long as possible- 30 minutes is good, or longer. It really does help. I have found that sometimes my breast leaks more afterwards, or an area opens up that needed to open up, and then I feel relief.
I hope this helps. Enjoy your holiday!
Miriam
thanks again for answer, its good to know that here is someone out there who know how this feels.
I went to Oslo yesterday, got an professor in canser to look at my GM, he said I must try the methotrex before an operation, im very happy, but I dont understand why I could not start on it for a month ago when I was supposed to start on it. Argh !! But the doc was very clear on that they dont know mutch GM and all the facts they got I also found on the internet. Its very difficult for them to know what to do. But we agreed on try the metho and see for a while if the GM is relaxing a bit.
Can u explain if you got the time what heating pad on top means? would really like to try something new. I got a silicon-wrap om my breast, its the only thing that helps a bit because they dont stick to the open flesh. But they cost about 100 dollar ( 500 NOK)) for a pack of five... I got some for free in the hospital and they dont have it in the drugstore so it feels a bit helpless. The bandage I got in my breast yesterday in Oslo was so sticky that I had to ligh down in the shower, and easy put water on it so it would loose from the skin. It must have looked very weird if someone got into my bathroom today.
Starting on metho next monday after I get home from my hollyday in Turkey. I think that warm ear and salt water will do some healing. Its good to belive that anyway.
Im so glad for having you here , you are my best help dealing with GM !!
And thanks again Jojo for creating this group.
Best wishes from Lill.
I went to Oslo yesterday, got an professor in canser to look at my GM, he said I must try the methotrex before an operation, im very happy, but I dont understand why I could not start on it for a month ago when I was supposed to start on it. Argh !! But the doc was very clear on that they dont know mutch GM and all the facts they got I also found on the internet. Its very difficult for them to know what to do. But we agreed on try the metho and see for a while if the GM is relaxing a bit.
Can u explain if you got the time what heating pad on top means? would really like to try something new. I got a silicon-wrap om my breast, its the only thing that helps a bit because they dont stick to the open flesh. But they cost about 100 dollar ( 500 NOK)) for a pack of five... I got some for free in the hospital and they dont have it in the drugstore so it feels a bit helpless. The bandage I got in my breast yesterday in Oslo was so sticky that I had to ligh down in the shower, and easy put water on it so it would loose from the skin. It must have looked very weird if someone got into my bathroom today.
Starting on metho next monday after I get home from my hollyday in Turkey. I think that warm ear and salt water will do some healing. Its good to belive that anyway.
Im so glad for having you here , you are my best help dealing with GM !!
And thanks again Jojo for creating this group.
Best wishes from Lill.
Lill,
I am doing better. Much better. So this should give you a little hope....I still have some areas that are a little red, a little tender, and definitely still a lump inside. But, nothing too painful, and I think I get better in tiny amounts all the time. I am continuing on taking herbs prescribed by a nutritional healer and I have been seeing an expert acupuncturist who also uses other alternative techniques on me. She believes that a lot of this is emotionally based for me, going back to childhood issues and I stored the pain in my body and this disease was one way that it came out. So I am working on that too.
I am sending you healing thoughts, and I hope that you will find some relief soon.
Also, in the meantime, when you have pain and inflammation, it really did help me to make castor oil packs, put them on my breast, and a heating pad on top. If you have any questions how to do this, I can explain further.
Miriam
I am doing better. Much better. So this should give you a little hope....I still have some areas that are a little red, a little tender, and definitely still a lump inside. But, nothing too painful, and I think I get better in tiny amounts all the time. I am continuing on taking herbs prescribed by a nutritional healer and I have been seeing an expert acupuncturist who also uses other alternative techniques on me. She believes that a lot of this is emotionally based for me, going back to childhood issues and I stored the pain in my body and this disease was one way that it came out. So I am working on that too.
I am sending you healing thoughts, and I hope that you will find some relief soon.
Also, in the meantime, when you have pain and inflammation, it really did help me to make castor oil packs, put them on my breast, and a heating pad on top. If you have any questions how to do this, I can explain further.
Miriam
Dear Lill:
Firstly you should not allow a doctor to make you feel guilty for not being tolerant of prednisone - prednisone is a drug with extremely strong side efffects and many cannot tolerate it - shutting down your adrenal system artificially is not to be taken lightly. I think you are just sensing their frustration of not knowing what they are dealing with or how to deal with it.
I know that I am concerned about the decision for wide excision, as I read Miriam is as well, because it is thought that in some cases, this can provoke more inflammation...and problems with wound healing, but I don't want to discourage you either. I just wish for your pain to end, and this decision making is not fair as none of us have the knowledge to make informed decisions - I wrestled with the same process, how to treat this, what impact would my decisions have on my health in the future - but I do not think my disease was as severe as yours. I can only imagine your pain.
Whatever you decide is the right decision for you and we all need to just send healing your way that you will find relief.
Your Friend, Jo
Firstly you should not allow a doctor to make you feel guilty for not being tolerant of prednisone - prednisone is a drug with extremely strong side efffects and many cannot tolerate it - shutting down your adrenal system artificially is not to be taken lightly. I think you are just sensing their frustration of not knowing what they are dealing with or how to deal with it.
I know that I am concerned about the decision for wide excision, as I read Miriam is as well, because it is thought that in some cases, this can provoke more inflammation...and problems with wound healing, but I don't want to discourage you either. I just wish for your pain to end, and this decision making is not fair as none of us have the knowledge to make informed decisions - I wrestled with the same process, how to treat this, what impact would my decisions have on my health in the future - but I do not think my disease was as severe as yours. I can only imagine your pain.
Whatever you decide is the right decision for you and we all need to just send healing your way that you will find relief.
Your Friend, Jo
Hello.
Thanks for your reply to you both.
I think I found an answer for me, since I didnt want to try the prednisone because of the sideaffects. and the doc here in Norway didnt want to try methotrexate alone. First I must mention that I had an eating disorder when I was younger and when I was on the prednisone it started to mess with my brain again. I was so afraid of my weigth and it started become a big problem for me. A horsedose of prednisone for one year is not the rigth way for me to go. And the docs respect that now.
After I quitted the prednisone I felt like some of my doc in my hometown wanted me to be punished, and I didnt get any treatment at all.
Its now the doc in Oslo who has showed my photoes of my breast for other doc around in europa who says that my GM has growed a bit out of controll and the best thing is to remove it . If it does comes back if think I have to deal with it when it comes. I am now relifed that someone out there see my pains and wants to help me .. Here in my old hospitale no one wanted to help me and that was more disturbing.
I got two kids, one girl who is 4 years old and a boy who is 3. Its time for me to get well and start my life again with them. And I will get a new breast in one year, and Im glad im living in a country where I dont need health insurrance so the state will give me a new breast after a year. It mitgh look as the easy way to go, but for my personaly Im desperate to move on.
Are u Miriam doing better?
Thanks for your reply to you both.
I think I found an answer for me, since I didnt want to try the prednisone because of the sideaffects. and the doc here in Norway didnt want to try methotrexate alone. First I must mention that I had an eating disorder when I was younger and when I was on the prednisone it started to mess with my brain again. I was so afraid of my weigth and it started become a big problem for me. A horsedose of prednisone for one year is not the rigth way for me to go. And the docs respect that now.
After I quitted the prednisone I felt like some of my doc in my hometown wanted me to be punished, and I didnt get any treatment at all.
Its now the doc in Oslo who has showed my photoes of my breast for other doc around in europa who says that my GM has growed a bit out of controll and the best thing is to remove it . If it does comes back if think I have to deal with it when it comes. I am now relifed that someone out there see my pains and wants to help me .. Here in my old hospitale no one wanted to help me and that was more disturbing.
I got two kids, one girl who is 4 years old and a boy who is 3. Its time for me to get well and start my life again with them. And I will get a new breast in one year, and Im glad im living in a country where I dont need health insurrance so the state will give me a new breast after a year. It mitgh look as the easy way to go, but for my personaly Im desperate to move on.
Are u Miriam doing better?
Lill,
I have been thinking of you as well, I have not posted much lately, sometimes it's too painful for me emotionally to "dwell" on this disease and so I don't post.
I am so sorry you may lose your breast. A part of me still can't help feeling that the doctors didn't do everything they could for you first. Prednisone and Methotrexate should have been tried for a while, I think, before surgery. My concern is that this disease seems to come back sometimes after surgery, or goes to the other breast, if the underlying inflammation is not dealt with first. But, I am not a medical doctor so of course this is just my unofficial advice. If you can't find a good doctor in Norway...can you look in other countries in Europe? Maybe there is a better doctor somewhere who can help?
Miriam
I have been thinking of you as well, I have not posted much lately, sometimes it's too painful for me emotionally to "dwell" on this disease and so I don't post.
I am so sorry you may lose your breast. A part of me still can't help feeling that the doctors didn't do everything they could for you first. Prednisone and Methotrexate should have been tried for a while, I think, before surgery. My concern is that this disease seems to come back sometimes after surgery, or goes to the other breast, if the underlying inflammation is not dealt with first. But, I am not a medical doctor so of course this is just my unofficial advice. If you can't find a good doctor in Norway...can you look in other countries in Europe? Maybe there is a better doctor somewhere who can help?
Miriam
Hi Lill:
Never, ever tired of hearing from you.
I have just been thinking a lot since your last post, just feel really sad to be honest that you will lose your breast, and helpless and maybe a bit angry at this disease...it is horrible, and the fact that they have no idea how to best treat it, when it is so invasive, scarring and painful, and that we seem to have no support, it is horrific really.
I think that others are not tired either, but it is just a hard thing to experience and acknowledge and process, and we all do this in our own way.
Does anyone have any ideas to raise the profile for this disease? How can we stop other young women from facing this, and how can we support those being treated, particularly when their caregivers have no experience...
Lill - I do think of you all of the time and you are a strong and positive woman and you should be proud of your courage. And you should know that although there are very few of us, you are not alone, and others here know at least some of your pain.
JoJo
Never, ever tired of hearing from you.
I have just been thinking a lot since your last post, just feel really sad to be honest that you will lose your breast, and helpless and maybe a bit angry at this disease...it is horrible, and the fact that they have no idea how to best treat it, when it is so invasive, scarring and painful, and that we seem to have no support, it is horrific really.
I think that others are not tired either, but it is just a hard thing to experience and acknowledge and process, and we all do this in our own way.
Does anyone have any ideas to raise the profile for this disease? How can we stop other young women from facing this, and how can we support those being treated, particularly when their caregivers have no experience...
Lill - I do think of you all of the time and you are a strong and positive woman and you should be proud of your courage. And you should know that although there are very few of us, you are not alone, and others here know at least some of your pain.
JoJo
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