Need some positivity
-Kat
Comments
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Positive
I have never heard of this type of tumor, but i will say that any age with cancer can wear on your spirits. I was diagnosed at age 49 and that is still young to me. I celebrated my 50th birthday on Feb 28th. I think you are doing one of the best things you can do and that is reaching out and talking to others. While it may not be a cure it helps to know that others are there for you. You are not alone. Additionally, you have the right to be informed as a patient. Continue to ask questions and if necessary seek other advice medically. My sister gave me a card that stated, Chemo sucks on the outside. The inside read, but if it sucks the cancer right out of you than its okay. This is how I see chemo. It is hard for some and even more difficult for some. I am two months from my last session of chemo amd I am still having difficulty. Stay strong, continue to reach out and talk about what you are feeling. You can do this. Find a support group to join.May God bless you in your journey so you can be an encouragement to others.0 -
Welcome to the boardPrettyBald49 said:Positive
I have never heard of this type of tumor, but i will say that any age with cancer can wear on your spirits. I was diagnosed at age 49 and that is still young to me. I celebrated my 50th birthday on Feb 28th. I think you are doing one of the best things you can do and that is reaching out and talking to others. While it may not be a cure it helps to know that others are there for you. You are not alone. Additionally, you have the right to be informed as a patient. Continue to ask questions and if necessary seek other advice medically. My sister gave me a card that stated, Chemo sucks on the outside. The inside read, but if it sucks the cancer right out of you than its okay. This is how I see chemo. It is hard for some and even more difficult for some. I am two months from my last session of chemo amd I am still having difficulty. Stay strong, continue to reach out and talk about what you are feeling. You can do this. Find a support group to join.May God bless you in your journey so you can be an encouragement to others.
I am very sorry that you have to deal with this at a very early age. I was diagnosed at the age of 46 three years ago. I have had 4 surgeries, 5 months of Chemo , 36 radiation treatments. I had very large tumor 6.5 cm while being size 4, cup B. CHemo is sucks, however I think it was right treatment for me.
Please stay positive, find a support group and come to this board for support and encouragement. Try to enjoy happy moments even during cancer treatment. It is a very rough ride, but you will be victorious in the end and win.
I do not have information about your type of cancer, however if your continue to research I am sure you will find women with similar diagnosis.
Wishing you good luck with radiation treatment0 -
KatNew Flower said:Welcome to the board
I am very sorry that you have to deal with this at a very early age. I was diagnosed at the age of 46 three years ago. I have had 4 surgeries, 5 months of Chemo , 36 radiation treatments. I had very large tumor 6.5 cm while being size 4, cup B. CHemo is sucks, however I think it was right treatment for me.
Please stay positive, find a support group and come to this board for support and encouragement. Try to enjoy happy moments even during cancer treatment. It is a very rough ride, but you will be victorious in the end and win.
I do not have information about your type of cancer, however if your continue to research I am sure you will find women with similar diagnosis.
Wishing you good luck with radiation treatment
My diagnosis is far different from yours, but I can relate to a "failed" chemo. For nine weeks, while on one specific chemo drug, my tumors continued to grow rapidly and become more numerous. When scans finally proved this, I was immediately switched to a different drug. The positive news is that different drugs work/don't work for some people. After a few weeks on the new drug, the tumors began to shrink again. I'm sure that continuing chemo would probably not be your first choice, but perhaps a different regimen would be successful in shrinking your tumors. Please come back and let us know how you're doing and what your next step is. I wish you the best. God bless. Marsha0 -
Kat, never heard of this
Kat, never heard of this type of cancer either so I read up on it. I am having tests in 2 weeks to see if the chemo I am on is working and was told that if it isn't then we will be changing to another one. Thank God that there are other chemos to try.
Will say a prayer for both you and your doctors as your care lies in thier hands. Hope someone here is familiar with this. It will wear on your spirts from time to time, can't wait till it is years down the road and you can look back on it and realize the strength it took to do this! You are amazing at 19!
~Carol0 -
I get doubting the
I get doubting the recommended treatment, and being nervous. I think all of us go through that even if the recommended treatment is 'working'. And yes, this does wear on your spirits. After all you've been fighting this for about 8 months now, that's a long battle. And to top it off, we give up hair, body parts, energy, eating normally, and just plain old feeling good to win.
My strategy is allow myself to feel low once in a while, to remember that it is a normal reaction to everything we go through. Then, and this part is easier said than done, I try and find a reason to get up and get going. Usually, I listen to music or take a walk. Sometimes meeting a friend for a chat over coffee or lunch works. I also have a friend who takes me for massages once in a while.
I also come here every day, it is my support group. Even when I feel too low to respond, it helps me to read the posts. It helps me to know I am not alone in this battle, and that I can call for reinforcement when I need it.
I hope this helps. I'm sending some positive energy your way!
Hugs,
Linda0 -
Kat, you are very brave.Gabe N Abby Mom said:I get doubting the
I get doubting the recommended treatment, and being nervous. I think all of us go through that even if the recommended treatment is 'working'. And yes, this does wear on your spirits. After all you've been fighting this for about 8 months now, that's a long battle. And to top it off, we give up hair, body parts, energy, eating normally, and just plain old feeling good to win.
My strategy is allow myself to feel low once in a while, to remember that it is a normal reaction to everything we go through. Then, and this part is easier said than done, I try and find a reason to get up and get going. Usually, I listen to music or take a walk. Sometimes meeting a friend for a chat over coffee or lunch works. I also have a friend who takes me for massages once in a while.
I also come here every day, it is my support group. Even when I feel too low to respond, it helps me to read the posts. It helps me to know I am not alone in this battle, and that I can call for reinforcement when I need it.
I hope this helps. I'm sending some positive energy your way!
Hugs,
Linda
As a mother, my heart breaks for what you are going through. Please don't give up hope. If you doubt your docs get a second opinion. You found this site so you are resourceful. Life is full of surprises. Some are good and some are challenging. Both of my children are Type 1 diabetics and my older son is now on dialysis waiting for a kidney match. Very painful for both of us. But where there is life there is hope and breast cancer has come a long way. My career specialty is motivation and personal growth. My son works full time and has a terrific attitude. If you are feeling hopeless and sad for more than 2 weeks tell your docs because depression is a common side effect of dealing with cancer. Please feel free to pm me if you are feeling down
Roseann0 -
Feeling down
Feeling down is part of the package with cancer. It is OK to let yourself be who you are at the moment. This is a good place to come for a sympathetic ear. You could also ask your Dr. or chemo nurses to try to help you find a support group for survivors in your area, or contact American Cancer society. There may be others close to your age or with similar kinds of cancer to yours. You could also look on sites for cancer research centers like M.D. Anderson or a medical university in your area. The Susan G. Komen site might be useful. My family and Church are major sources of support for me. I also find it useful to get involved in something that gets my mental focus on something else. I wrote a novel (plan to publish it one of these days). I also joined the group at our church that crochets baby blankets for the local children's hospital. Having a friend come over and sit with you, or take you out for a drive can help too...just for a change of scenery. Think of what you have the energy for that would make you happy, then do it.
You are in our prayers. seof0 -
Katseof said:Feeling down
Feeling down is part of the package with cancer. It is OK to let yourself be who you are at the moment. This is a good place to come for a sympathetic ear. You could also ask your Dr. or chemo nurses to try to help you find a support group for survivors in your area, or contact American Cancer society. There may be others close to your age or with similar kinds of cancer to yours. You could also look on sites for cancer research centers like M.D. Anderson or a medical university in your area. The Susan G. Komen site might be useful. My family and Church are major sources of support for me. I also find it useful to get involved in something that gets my mental focus on something else. I wrote a novel (plan to publish it one of these days). I also joined the group at our church that crochets baby blankets for the local children's hospital. Having a friend come over and sit with you, or take you out for a drive can help too...just for a change of scenery. Think of what you have the energy for that would make you happy, then do it.
You are in our prayers. seof
Wow you have been through so much and I hope you know that it is completely normal and understandable to start feeling down. Anger, denial, and frustration I think are also a completely normal - I know I felt all of the above at one time or another. You are very brave and strong.
Have you looked into the Imerman Angels? This is a great organization that connects cancer survivors with people fighting cancer and/or with caregivers. They are careful to try to connect people with others that have the same or very similar types of cancer. They have a huge network (they are partnered with LiveStrong) and have people there who had pretty much every kind of cancer there is. Also, you can connect with a person in any way you want (email, phone, letters, etc...).
Anyway, if you want to check them out the website is www.imermanangels.com
Good luck and please keep in touch. Keep fighting.
Clementine0 -
Kat, I thought I was young
Kat, I thought I was young diagnosed at 37, but 19....I'm not familiar with your type of tumor but I'm going to read up on it. There has to be someone on here that knows your type, if you put the type in the description line it may grab someones attention. "Is there anybody here with Phyllodes tunor" try that. I'm praying for you and your doctors to get you though this, you sound so brave! It's ok to feel down every now and again, just don't stay down for too long. I understand the sadness of losing hair, nails, etc. with chemo, it's hard. My hair came back quickly after chemo stopped and before you know it, yours will too.
Great Big Cyber Hug and Miles of Love,
~Kari0 -
Oh, Kat--you seem mature beyond your years,pinkkari09 said:Kat, I thought I was young
Kat, I thought I was young diagnosed at 37, but 19....I'm not familiar with your type of tumor but I'm going to read up on it. There has to be someone on here that knows your type, if you put the type in the description line it may grab someones attention. "Is there anybody here with Phyllodes tunor" try that. I'm praying for you and your doctors to get you though this, you sound so brave! It's ok to feel down every now and again, just don't stay down for too long. I understand the sadness of losing hair, nails, etc. with chemo, it's hard. My hair came back quickly after chemo stopped and before you know it, yours will too.
Great Big Cyber Hug and Miles of Love,
~Kari
but way too young to have to deal with this. I hope and pray that you find the answers and treatment you need. We all get down from time to time with this disease, but underneath--you sound like a strong, determined person.
Be a strong warrior and fight with all you've got. Take the love, comfort and help that others offer you. Be strong when you can and lean on others when you have to. Don't be afraid to ask for help.
Remember--all the physical things that treatment does to you such as hair loss, nail issues, etc. are all just temporary. You will get through this.
I don't know what part of the country you live in, but my community (Phoenix, AZ) has The Wellness Community which is nationwide but not in all cities. I go to a support group there that is tremendous and there is also a group dedicated to teens and young adults. Maybe there is something like that in your area.
Keep in touch with us. We all care.
Hugs, Renee0 -
Hey Katmissrenee said:Oh, Kat--you seem mature beyond your years,
but way too young to have to deal with this. I hope and pray that you find the answers and treatment you need. We all get down from time to time with this disease, but underneath--you sound like a strong, determined person.
Be a strong warrior and fight with all you've got. Take the love, comfort and help that others offer you. Be strong when you can and lean on others when you have to. Don't be afraid to ask for help.
Remember--all the physical things that treatment does to you such as hair loss, nail issues, etc. are all just temporary. You will get through this.
I don't know what part of the country you live in, but my community (Phoenix, AZ) has The Wellness Community which is nationwide but not in all cities. I go to a support group there that is tremendous and there is also a group dedicated to teens and young adults. Maybe there is something like that in your area.
Keep in touch with us. We all care.
Hugs, Renee
So sorry you are
Hey Kat
So sorry you are having to deal with this at such a young age. I went and read up on your tumor as I wasn't familiar with it either. Perhaps the removal of more tissue will make the difference this time. We will all send positive thoughts and group hugs to you.
Dee0 -
good thoughts heading your way..
so sorry you are going through this...
Denise0 -
We Care
Kat,
I am So sorry that you must go through this but we are glad you found us here. You can find us here 24/7, please keep us informed if you feel up to it. We are here to help you deal with everything that you must go through. We Care.
I can't imagine going through this at your age. You must be a very strong young woman.
God bless you,
Annette0 -
Katdisneyfan2008 said:good thoughts heading your way..
so sorry you are going through this...
Denise
I've never heard of your cancer. Seems like it is rare. You have every right to be upset.Some here are just starting treatment and surgeries but many have had cancer for a few years.Some much longer.
My mom was diagnosed in the 1940's(21 years old) with breast cancer.Had a masectomy.She lived 60 years.Passed away at 81 in a nursing home.She had alzheimers.I have always thought my mom was the longest living cancer patient.Still do feel that way. I have no idea what type she had. Nothing was ever said but I have DCIS, non invasive with a 1/2 cm tumor. A good diagnosis I am told.
My mom told me she had the tumor for 5 years.She was 16.She didn't know how to tell her mom and then money was tight.They were very frugal people and had a small farm.Raised melons and hogs.She felt they had no money.It wasn't till she married my dad that something was done.My dad told his father.Then grandpa asked one of his daughters(my aunt) to take my mom to a doctor.The cancer was found. All this happened before I was born.I know very well what it is like to live with a cancer survivor.I wasn't born till 6 years after her diagnosis and masectomy but I saw the scaring and how things were that many years ago. Today things have changed so much.Longer living breast cancer survivors.
Wishing you the best.You are in my thoughts and prayers.Hopefully you will find someone as young as you who has breast cancer so you and her can relate.I know they are out there.My doctor is treating a 22 year old who gave birth right before her diagnosis.
Lynn Smith0 -
Kat-your post just breaks my heart
But I have to say, one thing I noticed about you was your amazing attitude
and after all you have been through already, your amazing attitude got barely
chipped.
I looked up your tumor and it's very rare, and amongst younger women, even
rarer (is that even a word?). I hope you are getting second opinions on everything
with a rare cancer like that, there must not be a set regimen. I really, really hope
that the radiation will do the trick.
You are so young and so vibrant from what I can see. This is one illness that does
not discriminate. I wish I had advice for you, but all I can see is hang in there and
try to keep your spirits high, how you feel mentally really effects your physical health.
Big hugs,
Ayse0 -
I read your blog. You are a
I read your blog. You are a very loving and giving young woman. You have a beautiful gentle spirit. I am going to say a very special prayer for you as soon as i post this.
I read up on your type of cancer. Removing the recurring tumor and surrounding muscle sounds to me like the best step, followed by radiation.
Please keep us posted, as you hold a special place in many hearts, including mine.0 -
I've never heard of thiscamul said:Kat, never heard of this
Kat, never heard of this type of cancer either so I read up on it. I am having tests in 2 weeks to see if the chemo I am on is working and was told that if it isn't then we will be changing to another one. Thank God that there are other chemos to try.
Will say a prayer for both you and your doctors as your care lies in thier hands. Hope someone here is familiar with this. It will wear on your spirts from time to time, can't wait till it is years down the road and you can look back on it and realize the strength it took to do this! You are amazing at 19!
~Carol
I've never heard of this type of bc either. I am sorry I can't be of more help. Being diagnosed with any type of bc is horrible and scary. But, you can get thru whatever it takes to fight the beast and you will win.
Sending hugs and prayers,
Angie0 -
Thank you all
I really appreciate all of your prayers and kind words. Something I didn't mention is that my dad is a very well respected Radiation Oncologist and is currently one of the head doctors at the Proton Center in my city, so I am so incredibly blessed. I have seen the best of the best as far as doctors go including the Sarcoma experts at Dana Farbon, the cancer institute at Harvard. There have only been 2 cases like mine in all of medical literature, so my physicians have gotten multiple opinions and carefully thought out treatment plans in hopes of killing everything.
I realize that failed chemotherapy is just a minor setback in the scheme of things, and I'm very hopeful (and so are my doctors) that radiation will do the trick. My cancer is actually acting like a soft tissue sarcoma rather than a typical breast cancer.
Thank you all so much though for all of your words of wisdom and advice. Sometimes things happen that frankly just suck, but I have faith that everything will work out in the end.0 -
You are in especially good hands.HootieGirl said:Thank you all
I really appreciate all of your prayers and kind words. Something I didn't mention is that my dad is a very well respected Radiation Oncologist and is currently one of the head doctors at the Proton Center in my city, so I am so incredibly blessed. I have seen the best of the best as far as doctors go including the Sarcoma experts at Dana Farbon, the cancer institute at Harvard. There have only been 2 cases like mine in all of medical literature, so my physicians have gotten multiple opinions and carefully thought out treatment plans in hopes of killing everything.
I realize that failed chemotherapy is just a minor setback in the scheme of things, and I'm very hopeful (and so are my doctors) that radiation will do the trick. My cancer is actually acting like a soft tissue sarcoma rather than a typical breast cancer.
Thank you all so much though for all of your words of wisdom and advice. Sometimes things happen that frankly just suck, but I have faith that everything will work out in the end.
I will pray that with all the diverse opinions on this rare form of bc that your experts can formulate tier solutions quickly but wisely.0 -
So sorry to hear your
So sorry to hear your treatment is not going as planned. I haven't started chemo yet, I will at the end of the month. I know how cancer can get your spirits down. Try to surround yourself with positive people and loved ones. I keep telling myself that the treatments are vital and I will do what I have to do to get rid of this ugly disease. I wish you the best with your radiation treatments.
Sending positive thoughts your way
cindy0
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