Recently diagnosed. What do I do?

aztec45

mimivac said:

Lorraine,
I agree with much of what you are saying. I think lifestyle changes are definitely in order after a cancer diagnosis. One must start thinking seriously about nutrition and exercise to strengthen and protect the body going forward. I also have feelings about drug companies and their profit margins and the reasons that alternative/nutritional therapies or the environmental causes of cancer are not emphasized in our culture.

However, I would be extremely hesitant about advising anyone to forgoe traditional therapies. I know that's not what you're doing, and that you're stating your own experience and beliefs. I respect that, but I wanted to get this out there. Chemotherapy is not without its (sometimes serious) side effects. Neither is radiation and surgery. However, they are known agents that have saved lives. For some people there is no option -- chemo and rads are a must. There are risks with everything, including alternative therapies. Declining chemo and rads if they are indicated could have deadly consequences.

I'm a person who wants every available agent to kill this thing. I did surgery, chemo, radiation, and now I am exploring complementary medicine as well. The important thing is not to harm your chances of recovery by relying on only one method or kind of therapy/medicine. I am not condemning your choices, just stating another side. Good luck with everything, and I hope it all turns out well.

Mimi

Good Point
Good point Mimi. I found out from my Onc that a person could deny chemo. There is no law saying they must have it. But you are right. Chemo works. It has saved lots of lives and I am very thankful that I am having chemo now vs. back in the early years. The advances that have been made benefit us all. I never thought I would ever say that I am glad to have chemo but I am. I want to live.

P

aztec45

GG40 said:

Every day more bad news.
WOW this has been nuts. How can a simple "little" tumor result in Stage 4 cancer, I cannot figure out. Since my last post I had a PET scan which I got the results from yesterday. Large mass (6 cm) in left lung (remember my original tumor was in the right) and in one of the left lymph nodes AND a spot on my right hip (that's what makes it stage 4 I guess). The next move is to find out what kind of cancer is in the lung...SO a biopsy of my lung mass is scheduled for Tuesday. If the cancer is breast cancer we will assume it is ALL breast cancer and move forward with chemotherapy. If it is lung cancer it is possible I will have it removed and then we'll have to figure out (biopsy or whatever) the hip spot to see what it is. This is all just so surreal. I've done everything right...eat right, exercise, yearly mammograms....it's just NUTS. I will let you know after the biopsy what we are dealing with. I'm so tired of bad news....let's just pray it's all breast cancer. At least I think that is what I understood the oncologist would be best. Thanks for your support. Hope you are all fairing better than I. BUT God is still good and in control.

So, So, Sorry
GG,

I am so sorry that the hits just keep coming. I know it is easy for me to say but try to deal with one issue at a time. It is so overwhelming for you with all you are dealing with. Take it in strides and maybe you can breath. No one knows why anyone gets cancer. Look at Lance. He does the tour de France and got cancer. It is Gods plan for us, at this time, and for reasons we may never know. But we are here for you. Keep us updated.

P

Kylez

DianeBC said:

GG, please post when you can
GG, please post when you can and let us know how you are!

Hi GG! We are all waiting
Hi GG! We are all waiting for an update on you.

Hope you are doing ok.

Update us when you can please!

Unknown

This comment has been removed by the Moderator

jnl

MichelleLea said:

Faith
Speak with your oncologist about what your instincts are telling you. Faith in God helped me a great deal when I was diagnosed with NHL. I told my story on healthmad.com. Title: "Never Bring Fear to a Cancer Fight." Best wishes to you! Keep the faith!!!

Welcome Michelle Lea. Faith
Welcome Michelle Lea. Faith in God has brought a lot of us thru this.

Hugs, Leeza

Wolfi

lolad said:

you are not insane on
you are not insane on listening to your gut. Thats what i did when i decided for a double mastectomy. Im glad that i did because they hadnt ran any other test on me and my dx was in the left breast, but the right one had tumors and the tissue was starting to change and would have developed into bc and god only knows when it would have been found. I prayed to god about this and felt peace with my decision and thats how it was the right one for me as well. You have to decide for yourself what to do. Its not anyone elses choice or decision, its what you feel is right. Your in my thoughts and prayers. Good luck with what you decide to do.

laura

Listening to your gut
For me nothing showed up on my left side to indicate bc, but nothing had shown up on my right until they did the core biopsy and lumpectomy. My gut is telling me that there is (or will be) something in my left if left untreated. I'm not willing to have a wait-and-see attitude. I don't want to find out one to ten years from now that I have invasive cancer on the left side that just never showed up on mamograms, MRIs or ultrasounds.

My double mastectomy is scheduled for 8/26 and I am comfortable with my decision because it was MINE and not made by someone else for me.

I think there is a lot to be said about following your gut feelings.

dmc_emmy

Kylez said:

Hi Rush and welcome.
Hi Rush and welcome.

Hugs,

Kylez

GG-I am so sorry to hear all the bad news...
there are other women here who have been diagnosed with stage 4 cancer and they got through it. I'm sure you can, too.

If it's any consolation, there's a great book out there that I read this summer. It's called, "There's No Place Like Hope" by Vickie Girard. She was a stage 4 survivor, but she beat it and lived to write about it. It's a very inspiring and spiritually driven book. I got my copy at Barnes and Noble after someone here recommended it. Just a thought.

Hope you get some answers soon about what was found on the PET Scan. Know that we are here with and, as you may already have discovered, nearly around the clock.

My thoughts and prayers remain with you.
dmc

dmc_emmy

rush361 said:

Biopsy Tuesday
GG.. I'm new to this too, and the tests... waiting... tests... bad news, etc. is frustrating. Just keep your faith and know that you are being lifted up in prayer. This discussion board is awesome and you have a lot of people praying for you here. Keep us informed of the progress and reports. We will try to help as much as we can. You will get through this....God is in control.

Rush...is the pup next to you a service dog?
He/she is a cutie!

You're right Rush, the board is a great place to run to for around-the-clock cyber hugs. I'm glad I found it.

I don't know if I greeted you yet with a warm welcome, if not--Welcome Rush361, if so-- Welcome again.

dmc

GG40

dmc_emmy said:

GG-I am so sorry to hear all the bad news...
there are other women here who have been diagnosed with stage 4 cancer and they got through it. I'm sure you can, too.

If it's any consolation, there's a great book out there that I read this summer. It's called, "There's No Place Like Hope" by Vickie Girard. She was a stage 4 survivor, but she beat it and lived to write about it. It's a very inspiring and spiritually driven book. I got my copy at Barnes and Noble after someone here recommended it. Just a thought.

Hope you get some answers soon about what was found on the PET Scan. Know that we are here with and, as you may already have discovered, nearly around the clock.

My thoughts and prayers remain with you.
dmc

Sorry to be so long posting......it's been so crazy.
Gosh so much has happened and I've been back to work 4 hrs and now 6 hrs a day. Let's see, where to begin. The biopsy of my lung showed a thymoma. Not breast cancer but a very rare malignant tumor. SO since it wasn't breast cancer, I had to have the hip tumor biopsied and the other lymph node...both were breast cancer. My official diagnosis is metastatic breast cancer (metastasized to my hip)- stage 4 - treatable but not curable. My oncologist plans to treat both cancers at the same time....I'm supposed to start chemotherapy next Wednesday. Tomorrow I am going to the Cancer Institute at UNMC to see an oncologist who specializes in breast cancer. My oncologist will talk with her when I have seen her and welcome her input. I am anxious to ask her what I consider the main question here and that is has she "ever treated anyone with both breast cancer and a thymoma"? Seems like I should try to find a specialist that has.....but how. I have a doctor friend at Mass General in Boston who is looking for a specialist (found a thymoma one...BUT). Also wondering about Cancer Centers and Institutes.

I've also been reading a lot (I already have that book There's No Place Like HOPE and I love it) - convinced that diet, herbs, etc., are crucial in getting through chemo and cancer recovery but don't really know for sure what to get. Seems like there should be someone out there that could answer all these questions for me. Maybe this specialist will be that person.

Thanks to all of you for your concern and posts of encouragement. I am not afraid of the Stage IV diagnosis per se but sure wish I had confidence that they know how to treat both. Part of me just wants to have a surgeon take the thymoma OUT. But I also don't want to delay treatment ... my head swims with this all. But I know that none of this surprises God and He has it all in control...just wish He'd tell me what to do

I hope you all are doing well and again thank you for your support.

GG40

fauxma

GG40 said:

Sorry to be so long posting......it's been so crazy.
Gosh so much has happened and I've been back to work 4 hrs and now 6 hrs a day. Let's see, where to begin. The biopsy of my lung showed a thymoma. Not breast cancer but a very rare malignant tumor. SO since it wasn't breast cancer, I had to have the hip tumor biopsied and the other lymph node...both were breast cancer. My official diagnosis is metastatic breast cancer (metastasized to my hip)- stage 4 - treatable but not curable. My oncologist plans to treat both cancers at the same time....I'm supposed to start chemotherapy next Wednesday. Tomorrow I am going to the Cancer Institute at UNMC to see an oncologist who specializes in breast cancer. My oncologist will talk with her when I have seen her and welcome her input. I am anxious to ask her what I consider the main question here and that is has she "ever treated anyone with both breast cancer and a thymoma"? Seems like I should try to find a specialist that has.....but how. I have a doctor friend at Mass General in Boston who is looking for a specialist (found a thymoma one...BUT). Also wondering about Cancer Centers and Institutes.

I've also been reading a lot (I already have that book There's No Place Like HOPE and I love it) - convinced that diet, herbs, etc., are crucial in getting through chemo and cancer recovery but don't really know for sure what to get. Seems like there should be someone out there that could answer all these questions for me. Maybe this specialist will be that person.

Thanks to all of you for your concern and posts of encouragement. I am not afraid of the Stage IV diagnosis per se but sure wish I had confidence that they know how to treat both. Part of me just wants to have a surgeon take the thymoma OUT. But I also don't want to delay treatment ... my head swims with this all. But I know that none of this surprises God and He has it all in control...just wish He'd tell me what to do

I hope you all are doing well and again thank you for your support.

GG40

GG40
So sorry that all this
GG40
So sorry that all this has been laid at your door. I know that we have others that are stage 4, although not necessarily with the same secondary cancers. I hope that you find the right specialist and that your treatments go well. It is good that you have your sense of faith. It can move mountains.
Stef

Cindy54

GG40 said:

Sorry to be so long posting......it's been so crazy.
Gosh so much has happened and I've been back to work 4 hrs and now 6 hrs a day. Let's see, where to begin. The biopsy of my lung showed a thymoma. Not breast cancer but a very rare malignant tumor. SO since it wasn't breast cancer, I had to have the hip tumor biopsied and the other lymph node...both were breast cancer. My official diagnosis is metastatic breast cancer (metastasized to my hip)- stage 4 - treatable but not curable. My oncologist plans to treat both cancers at the same time....I'm supposed to start chemotherapy next Wednesday. Tomorrow I am going to the Cancer Institute at UNMC to see an oncologist who specializes in breast cancer. My oncologist will talk with her when I have seen her and welcome her input. I am anxious to ask her what I consider the main question here and that is has she "ever treated anyone with both breast cancer and a thymoma"? Seems like I should try to find a specialist that has.....but how. I have a doctor friend at Mass General in Boston who is looking for a specialist (found a thymoma one...BUT). Also wondering about Cancer Centers and Institutes.

I've also been reading a lot (I already have that book There's No Place Like HOPE and I love it) - convinced that diet, herbs, etc., are crucial in getting through chemo and cancer recovery but don't really know for sure what to get. Seems like there should be someone out there that could answer all these questions for me. Maybe this specialist will be that person.

Thanks to all of you for your concern and posts of encouragement. I am not afraid of the Stage IV diagnosis per se but sure wish I had confidence that they know how to treat both. Part of me just wants to have a surgeon take the thymoma OUT. But I also don't want to delay treatment ... my head swims with this all. But I know that none of this surprises God and He has it all in control...just wish He'd tell me what to do

I hope you all are doing well and again thank you for your support.

GG40

GG
Gosh, so much has been happening. But I believe you are on the right path with seeking different types of treatments and treatment centers and lifestyle changes. You also have a beautiful attitude. That is half the battle. That you are working still while all of this is going on is a strong testament to the type of person you are. I have followed your posts and been amazed at the hopefulness in each one. You have given me a lot of inspiration. Please keep us posted when you can. Many hugs, Cindy

survivorbc09

fauxma said:

GG40
So sorry that all this
GG40
So sorry that all this has been laid at your door. I know that we have others that are stage 4, although not necessarily with the same secondary cancers. I hope that you find the right specialist and that your treatments go well. It is good that you have your sense of faith. It can move mountains.
Stef

I am so sorry GG for all of
I am so sorry GG for all of this. I also hope that you find the right doctor that will get you thru this. Thanks for posting. I will keep you in my prayers!

Hugs!

debragood1

GG40 said:

Sorry to be so long posting......it's been so crazy.
Gosh so much has happened and I've been back to work 4 hrs and now 6 hrs a day. Let's see, where to begin. The biopsy of my lung showed a thymoma. Not breast cancer but a very rare malignant tumor. SO since it wasn't breast cancer, I had to have the hip tumor biopsied and the other lymph node...both were breast cancer. My official diagnosis is metastatic breast cancer (metastasized to my hip)- stage 4 - treatable but not curable. My oncologist plans to treat both cancers at the same time....I'm supposed to start chemotherapy next Wednesday. Tomorrow I am going to the Cancer Institute at UNMC to see an oncologist who specializes in breast cancer. My oncologist will talk with her when I have seen her and welcome her input. I am anxious to ask her what I consider the main question here and that is has she "ever treated anyone with both breast cancer and a thymoma"? Seems like I should try to find a specialist that has.....but how. I have a doctor friend at Mass General in Boston who is looking for a specialist (found a thymoma one...BUT). Also wondering about Cancer Centers and Institutes.

I've also been reading a lot (I already have that book There's No Place Like HOPE and I love it) - convinced that diet, herbs, etc., are crucial in getting through chemo and cancer recovery but don't really know for sure what to get. Seems like there should be someone out there that could answer all these questions for me. Maybe this specialist will be that person.

Thanks to all of you for your concern and posts of encouragement. I am not afraid of the Stage IV diagnosis per se but sure wish I had confidence that they know how to treat both. Part of me just wants to have a surgeon take the thymoma OUT. But I also don't want to delay treatment ... my head swims with this all. But I know that none of this surprises God and He has it all in control...just wish He'd tell me what to do

I hope you all are doing well and again thank you for your support.

GG40

HI GG
I had the same choice as you and chose bilateral mastectomy with immediate reconstruction (silicone implants). I had my surgery first and am now having chemo. I'm glad about my choice.

I recommend going to a cancer center, if possible. I'm going to Memorial Sloan-Kettering Cancer Center in NYC and I feel like I'm in really good hands there. It is well run and everyone is competent.

I'm wishing all good things for you.

Please let me know you're doing and stay strong.

Deb

Kylez

Cindy54 said:

GG
Gosh, so much has been happening. But I believe you are on the right path with seeking different types of treatments and treatment centers and lifestyle changes. You also have a beautiful attitude. That is half the battle. That you are working still while all of this is going on is a strong testament to the type of person you are. I have followed your posts and been amazed at the hopefulness in each one. You have given me a lot of inspiration. Please keep us posted when you can. Many hugs, Cindy

GG, stay positive and
GG, stay positive and strong. We are all here for you. Keep us updated as to how you are doing.

Hugs, Kylez

carkris

jnl said:

Welcome Michelle Lea. Faith
Welcome Michelle Lea. Faith in God has brought a lot of us thru this.

Hugs, Leeza

listening toyour gut
Definately listen to your gut, I had BC 15 years ago, no family history and /gene testing negative. I had a mastectomy, and CMF then had a local recurrence and radiation. All for 1cm and node neg cancer, I had in situ and that was the reason for the mastectomy. scant but scattered.age 34. had been well but dealt with scares and biopsies. Recently was seeing surgeeons for a propholactic mastectomy, saw amny docs, had my mammos, did everything. felt alump where I had a biopsy a year and a half before. MRI cancer or scar tissue-cancer. I had decided benign or cancer the boob was going. had reconstruction, but now found will need rads so keeping that is in question. will start chemo next week. dont do pet here bone and CT scans neg. Long story, wish I had listen to my gut, but was doing the college thing and told It is not an emergency, I know they would hve found the cancer anyway but perhaps smaller and not node positive.
Anyway was relctant to post as I know I may be unusual. I have a friend who had apartial mastectomy 2 nodes 5cm tumor 18 years ago and is fine. It all just works differntly in everyones body. But make your decision not on a knee jerk reaction but well thought out and researched and how you personally feel. For me the loss of m breasts is not the big thing its the threat on my life so whatever helps you -do it.

GG40

debragood1 said:

HI GG
I had the same choice as you and chose bilateral mastectomy with immediate reconstruction (silicone implants). I had my surgery first and am now having chemo. I'm glad about my choice.

I recommend going to a cancer center, if possible. I'm going to Memorial Sloan-Kettering Cancer Center in NYC and I feel like I'm in really good hands there. It is well run and everyone is competent.

I'm wishing all good things for you.

Please let me know you're doing and stay strong.

Deb

Just a quick update.
Went to the specialist last week and she was awesome. I am so lucky to have such a great network of doctors in my area. She wanted her pathologists to look at all my tissue and since she had no experience herself with thymoma, she was going to talk to several of her colleague at the Medical Center and get back to me. They called today and told me that she wants me to have the thymoma removed before I start chemo. SO no chemo starting this week which I have to admit I'm not sad about....BUT want to get this all done. Anyway I have an appt with a thoracic surgeon on Wednesday. Will keep you posted when my surgery will be.

Again thanks for your support. This sure is dragging on, but I really am glad for them getting the best treatment plan for me instead of just diving into chemo on two different cancers. From everything I've read and hear, once they get the thymoma out that's it...I don't "think" I have to have any further treatment on that. We'll see what the surgeon says, however.

Later.......GG40

GG40

debragood1 said:

HI GG
I had the same choice as you and chose bilateral mastectomy with immediate reconstruction (silicone implants). I had my surgery first and am now having chemo. I'm glad about my choice.

I recommend going to a cancer center, if possible. I'm going to Memorial Sloan-Kettering Cancer Center in NYC and I feel like I'm in really good hands there. It is well run and everyone is competent.

I'm wishing all good things for you.

Please let me know you're doing and stay strong.

Deb

Just a quick update.
Went to the specialist last week and she was awesome. I am so lucky to have such a great network of doctors in my area. She wanted her pathologists to look at all my tissue and since she had no experience herself with thymoma, she was going to talk to several of her colleague at the Medical Center and get back to me. They called today and told me that she wants me to have the thymoma removed before I start chemo. SO no chemo starting this week which I have to admit I'm not sad about....BUT want to get this all done. Anyway I have an appt with a thoracic surgeon on Wednesday. Will keep you posted when my surgery will be.

Again thanks for your support. This sure is dragging on, but I really am glad for them getting the best treatment plan for me instead of just diving into chemo on two different cancers. From everything I've read and hear, once they get the thymoma out that's it...I don't "think" I have to have any further treatment on that. We'll see what the surgeon says, however.

Later.......GG40

Moopy23

GG40 said:

Just a quick update.
Went to the specialist last week and she was awesome. I am so lucky to have such a great network of doctors in my area. She wanted her pathologists to look at all my tissue and since she had no experience herself with thymoma, she was going to talk to several of her colleague at the Medical Center and get back to me. They called today and told me that she wants me to have the thymoma removed before I start chemo. SO no chemo starting this week which I have to admit I'm not sad about....BUT want to get this all done. Anyway I have an appt with a thoracic surgeon on Wednesday. Will keep you posted when my surgery will be.

Again thanks for your support. This sure is dragging on, but I really am glad for them getting the best treatment plan for me instead of just diving into chemo on two different cancers. From everything I've read and hear, once they get the thymoma out that's it...I don't "think" I have to have any further treatment on that. We'll see what the surgeon says, however.

Later.......GG40

GG40, thanks for your
GG40, thanks for your update. I wondered how you were doing and hoped an effective treatment plan was developed. Great news that the thymoma can be removed surgically. You certainly deserved some good news after the long stretch you experienced.

My best to you. I admire your undaunted spirit, the way you have just kept moving forward regardless.

Kylez

Moopy23 said:

GG40, thanks for your
GG40, thanks for your update. I wondered how you were doing and hoped an effective treatment plan was developed. Great news that the thymoma can be removed surgically. You certainly deserved some good news after the long stretch you experienced.

My best to you. I admire your undaunted spirit, the way you have just kept moving forward regardless.

Hi GG
Hey GG! Thanks for posting and letting us know. You have really been thru the ringer! It sounds like you have a great team that is helping you. Good luck with your surgery. Let us know when you can how you are.

Kylez ♥

jnl

GG40 said:

Just a quick update.
Went to the specialist last week and she was awesome. I am so lucky to have such a great network of doctors in my area. She wanted her pathologists to look at all my tissue and since she had no experience herself with thymoma, she was going to talk to several of her colleague at the Medical Center and get back to me. They called today and told me that she wants me to have the thymoma removed before I start chemo. SO no chemo starting this week which I have to admit I'm not sad about....BUT want to get this all done. Anyway I have an appt with a thoracic surgeon on Wednesday. Will keep you posted when my surgery will be.

Again thanks for your support. This sure is dragging on, but I really am glad for them getting the best treatment plan for me instead of just diving into chemo on two different cancers. From everything I've read and hear, once they get the thymoma out that's it...I don't "think" I have to have any further treatment on that. We'll see what the surgeon says, however.

Later.......GG40

Good luck with your surgery
Good luck with your surgery GG. This has been a long drawn out experience for you. But, now things will move quickly for you, I hope. Keep us updated.

Hugs, Leeza