Has anyone here been dx with phyllodes tumor?
hugs, cheyenne
Comments
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Cheyenne,
My radiologist suspected that I had a phyllodes tumor at first, but it turned out to be invasive ductal carcinoma. I agree that there's not a lot to read up on when it comes to malignant phyllodes. Is your oncologist experienced in this type of cancer? If not, I would seek out an expert in the field so you can get the best care. Have you a chest x-ray yet?
Mimi0 -
Cheyennemimivac said:Cheyenne,
My radiologist suspected that I had a phyllodes tumor at first, but it turned out to be invasive ductal carcinoma. I agree that there's not a lot to read up on when it comes to malignant phyllodes. Is your oncologist experienced in this type of cancer? If not, I would seek out an expert in the field so you can get the best care. Have you a chest x-ray yet?
Mimi
I agreed 100% with Mimi. Call schedule an appointment. Had mri ? ask and insist. Check out specialist within your insurance group ..
It's your body ..
Take Care.
VickiSam0 -
Thanks for your advice.mimivac said:Cheyenne,
My radiologist suspected that I had a phyllodes tumor at first, but it turned out to be invasive ductal carcinoma. I agree that there's not a lot to read up on when it comes to malignant phyllodes. Is your oncologist experienced in this type of cancer? If not, I would seek out an expert in the field so you can get the best care. Have you a chest x-ray yet?
Mimi
Thanks for your advice. I don't have an oncologist, I guess because I don't have to go through any further treatments, except possibly more surgery. My general surgeon is wonderful, and is experienced with this type of tumor. No, I haven't had a chest x-ray or an mri, and am wondering if those are standard tests?
Thanks everyone for the support and advice. It seems like I am living in a different country or something, this is so unfamiliar to me. And, while my friends and family have been great, they don't have any idea what I am going through, and I can't explain it to them. It's nice to be able to talk to others that have or are going through the same thing. It means so much!
Cheyenne0 -
CheyenneMyTurnNow said:Cheyenne, I just wanted to
Cheyenne, I just wanted to welcome you. I don't have any experience with your dx but I'm sure there are women/men on here who do. Keep asking away.
I'm sorry I can't help you with this but would like to welcome you to the group, please post often and let us get to know you. You'll find great support here.
Good luck
Aurora0 -
Thanks to everyone for beingaurora2009 said:Cheyenne
I'm sorry I can't help you with this but would like to welcome you to the group, please post often and let us get to know you. You'll find great support here.
Good luck
Aurora
Thanks to everyone for being so welcoming. It is so nice, expecially at a time like this. I feel like my life is in limbo right now. It takes all I have to get up and function every morning, get my kids off to school and me to work. I am so exhausted, my housework has fallen by the wayside. Sometimes I feel so lazy, all I can do when I get home at night is fall into bed, or the couch. Some nights I am even to tired to eat. My brother lives with me, so luckily he makes sure the kids have done homework and had dinner before I get home, but I feel so guilty because I don't have the energy to spend time with them. It is especially hard on my 5 year old little boy. He is a mamma's boy. All I want at this point is to be here to watch them grow up, and live happy, full lives. I'm not saying that I think the cancer will get me, but I have to admit that sometimes when I let myself think about it, it scares me to death. Not really for me, but for my kids. Who would take care of them? It is the question that keeps me awake most nights. Sure, I have friends and family that would be glad to take them in, but I am shelfish, I want to be the one taking care of them.....
I'm sorry, I just kind of started rambling on. I just don't have anyone here to talk to about these things. My friends get upset if I bring the subject up. Don't get me wrong, they are very supportive of me, they just don't like to hear that I have been thinking in that direction, but of course I have. I'm human. But, I will continue to pray, and hold onto my faith in God, that through him, we can overcome all things.
Thanks for letting me vent!
Hugs,
Cheyenne0 -
Welcome Cheyennecheyennedawn said:Thanks to everyone for being
Thanks to everyone for being so welcoming. It is so nice, expecially at a time like this. I feel like my life is in limbo right now. It takes all I have to get up and function every morning, get my kids off to school and me to work. I am so exhausted, my housework has fallen by the wayside. Sometimes I feel so lazy, all I can do when I get home at night is fall into bed, or the couch. Some nights I am even to tired to eat. My brother lives with me, so luckily he makes sure the kids have done homework and had dinner before I get home, but I feel so guilty because I don't have the energy to spend time with them. It is especially hard on my 5 year old little boy. He is a mamma's boy. All I want at this point is to be here to watch them grow up, and live happy, full lives. I'm not saying that I think the cancer will get me, but I have to admit that sometimes when I let myself think about it, it scares me to death. Not really for me, but for my kids. Who would take care of them? It is the question that keeps me awake most nights. Sure, I have friends and family that would be glad to take them in, but I am shelfish, I want to be the one taking care of them.....
I'm sorry, I just kind of started rambling on. I just don't have anyone here to talk to about these things. My friends get upset if I bring the subject up. Don't get me wrong, they are very supportive of me, they just don't like to hear that I have been thinking in that direction, but of course I have. I'm human. But, I will continue to pray, and hold onto my faith in God, that through him, we can overcome all things.
Thanks for letting me vent!
Hugs,
Cheyenne
I hear what you are saying. Sometimes I think who will be here to take care of my husband? (kids are grown). Funny thing, he can take care of himself, as he has done an awesome job taking care of me. Your feelings are normal. It sucks though when thoughts of our mortality creep into our little heads. I just finished rads so I know all about being tired.. hang in there. You came to a great place for support and venting. As a matter of fact, whatever is on your mind has probably been on someone else's mind at one time or another. So, come her anytime and for any reason, and we will do our best to walk through this journey with you! ♥ Pammy0 -
Phyllodes Diagnosis
Hey Cheyenne:
I was diagnosed back in December with the Phyllodes Tumor. I underwent surgery to remove it and then had to have a second surgery to remove more tissue. After the second surgery the pathology showed the tumor to be boarderline but they showed clear tissue all the way around the tumor. Thought I was done except for reconstruction and was in the process of setting up the reconstruction surgery when my six month checkup showed another tumor. It had returned within six months and this time my doctor recommended a mastectomy. When they took it out last month it was 7cm and was malignant. Because this tumor is so rare and that it reoccured so quickly my doctor sent me to an oncologist. My doctors were concerned because of how fast it reoccured, the size it was in such a short time and that it was malignant. They did however show clear tissue all the way around the tumor again this time and they also tested 3 lymph nodes and found no cancer present. The oncologist I saw thought that since it was so aggressive that he thought I should have radiation therapy, but he wanted to consult with a specialist in New York that handles rare cancers. Unfortunately they both recommended that I have radiation therapy as a precaution to make sure that it does not spread through my blood or come back in the chest wall. I don't want to scare you but you do need to keep a very close watch to make sure it does not reoccur and maybe you need to consult with an oncologist. They tell me chemo does nothing for this tumor but radiation has been done in the past and may help prevent it from spreading to the chest wall or lungs. I feel good about my treatment path, especially since my doctor consulted with the specialist in New York who has treated these tumors before. It is scary facing a disease that is so rare especially since there is no standard treatment. Good luck with your recovery process and I hope I helped!
Good Luck!
Denise0 -
Phyllodes Tumordenisegreen said:Phyllodes Diagnosis
Hey Cheyenne:
I was diagnosed back in December with the Phyllodes Tumor. I underwent surgery to remove it and then had to have a second surgery to remove more tissue. After the second surgery the pathology showed the tumor to be boarderline but they showed clear tissue all the way around the tumor. Thought I was done except for reconstruction and was in the process of setting up the reconstruction surgery when my six month checkup showed another tumor. It had returned within six months and this time my doctor recommended a mastectomy. When they took it out last month it was 7cm and was malignant. Because this tumor is so rare and that it reoccured so quickly my doctor sent me to an oncologist. My doctors were concerned because of how fast it reoccured, the size it was in such a short time and that it was malignant. They did however show clear tissue all the way around the tumor again this time and they also tested 3 lymph nodes and found no cancer present. The oncologist I saw thought that since it was so aggressive that he thought I should have radiation therapy, but he wanted to consult with a specialist in New York that handles rare cancers. Unfortunately they both recommended that I have radiation therapy as a precaution to make sure that it does not spread through my blood or come back in the chest wall. I don't want to scare you but you do need to keep a very close watch to make sure it does not reoccur and maybe you need to consult with an oncologist. They tell me chemo does nothing for this tumor but radiation has been done in the past and may help prevent it from spreading to the chest wall or lungs. I feel good about my treatment path, especially since my doctor consulted with the specialist in New York who has treated these tumors before. It is scary facing a disease that is so rare especially since there is no standard treatment. Good luck with your recovery process and I hope I helped!
Good Luck!
Denise
Hey Denise,
Thanks for the advice, and it is nice being able to talk with someone who has actually had the same diagnosis. But, I am so sorry that you were dx with the same thing, and have had a recurrence. Are you still going through radiation treatments, or are you done already? It is very scary having this diagnosis, even though it was what my doctor was hoping it would be. I don't know, I guess he thought that it would be the lesser of the evils? But, I do trust him, he has had over 30 yrs of experience in this field, and has dealt with these types of tumors. But, I can't help but wonder if enough was done. The more I read about this, the more that I am worried, because I read that there is usually no lymph node involvement, the first place it is likely to spread is the chest wall or lungs.
I wish you well, and thanks again for the advice. It was really helpful. I think I need to make a call to my doctor about this. I will keep you posted.
Hugs,
Cheyenne0 -
Phyllodes Diagnosischeyennedawn said:Phyllodes Tumor
Hey Denise,
Thanks for the advice, and it is nice being able to talk with someone who has actually had the same diagnosis. But, I am so sorry that you were dx with the same thing, and have had a recurrence. Are you still going through radiation treatments, or are you done already? It is very scary having this diagnosis, even though it was what my doctor was hoping it would be. I don't know, I guess he thought that it would be the lesser of the evils? But, I do trust him, he has had over 30 yrs of experience in this field, and has dealt with these types of tumors. But, I can't help but wonder if enough was done. The more I read about this, the more that I am worried, because I read that there is usually no lymph node involvement, the first place it is likely to spread is the chest wall or lungs.
I wish you well, and thanks again for the advice. It was really helpful. I think I need to make a call to my doctor about this. I will keep you posted.
Hugs,
Cheyenne
Hey Cheyenne:
I have not started radiation yet. We are still in the process of tissue expansion, I have about 3 or 4 more weeks before that is completed. I am currently scheduled to begin radiation around the 2nd of November or possible a few weeks earlier depending on the tissue expansion. I was told that most of the time these tumors are benign and when they are malignant that it is more of a concern because of how they spread and how aggressive they can be. I know that when my surgeon first told me that he was sending me to the oncologist that it really freaked me out. But now that I know what the radiation treatments will be and the possible side affects I feel better knowing that I am having this treatment and will be doing everything that is possible at this time to keep it from spreading further. All the research I have done and friends of mine have done on the subject have yielded the same information that you have obtained. There just is not much out there on this cancer. But it is good to talk to someone else with this diagnosis and confirming the same information that I am being told, just wish there was more. If I hear of anything new out there, I will let you know. You may also want to tell your doctors that my oncologist consulted with a specialist in New York who works with rare cancers before we decided to treat with radiation. I hope all goes well with you and hopefully you will not have a reoccurence!!!!
Keep moving forward and all will be well!!!!!
Denise0 -
Hey Denisedenisegreen said:Phyllodes Diagnosis
Hey Cheyenne:
I have not started radiation yet. We are still in the process of tissue expansion, I have about 3 or 4 more weeks before that is completed. I am currently scheduled to begin radiation around the 2nd of November or possible a few weeks earlier depending on the tissue expansion. I was told that most of the time these tumors are benign and when they are malignant that it is more of a concern because of how they spread and how aggressive they can be. I know that when my surgeon first told me that he was sending me to the oncologist that it really freaked me out. But now that I know what the radiation treatments will be and the possible side affects I feel better knowing that I am having this treatment and will be doing everything that is possible at this time to keep it from spreading further. All the research I have done and friends of mine have done on the subject have yielded the same information that you have obtained. There just is not much out there on this cancer. But it is good to talk to someone else with this diagnosis and confirming the same information that I am being told, just wish there was more. If I hear of anything new out there, I will let you know. You may also want to tell your doctors that my oncologist consulted with a specialist in New York who works with rare cancers before we decided to treat with radiation. I hope all goes well with you and hopefully you will not have a reoccurence!!!!
Keep moving forward and all will be well!!!!!
Denise
Good luck with your radiation treatments. Since you are having tissue expansion, does that mean you are going to have reconstruction? That is not an option for me at this point, and something that I am not concerned about. Maybe that will change in the future.
It is so frustrating to me not to be able to get the information I want about this disease! And, as you know, it is so scary being dx'd with it. Because there is no standard treatment, I feel like not enough is being done. I did put a call into my doctor this morning, telling him that I have some unresolved concerns. Hopefully his nurse will get some answers and get back to me soon. Thanks for keeping me informed, and if I get any new news, I will do the same.
I hope all goes well with you also. We just have to take it one day at a time. God bless!
Hugs,
Cheyenne0 -
Hey Cheyenne:cheyennedawn said:Hey Denise
Good luck with your radiation treatments. Since you are having tissue expansion, does that mean you are going to have reconstruction? That is not an option for me at this point, and something that I am not concerned about. Maybe that will change in the future.
It is so frustrating to me not to be able to get the information I want about this disease! And, as you know, it is so scary being dx'd with it. Because there is no standard treatment, I feel like not enough is being done. I did put a call into my doctor this morning, telling him that I have some unresolved concerns. Hopefully his nurse will get some answers and get back to me soon. Thanks for keeping me informed, and if I get any new news, I will do the same.
I hope all goes well with you also. We just have to take it one day at a time. God bless!
Hugs,
Cheyenne
I am having reconstruction, but the radiation will be putting a hold on the final stages of the reconstruction by about 6 months. My general surgeon did the mastectomy and then my plastic surgeon finished with the placement of the tissue expanders all in the same surgery. When the second tumor was found I was in the process of reconstruction then, to even both up. But we found the tumor first and had to do the mastectomy. I opted to have both sides taken just because I didn't want to face it possibly spreading to my right side or any other issues. I had fibrocystic tissue in the right side and already had a scare on that side before all of this happened. It may have been a radical choice but I feel better knowing that I have tried to do everything I can to keep this from spreading or coming back. I hope that in the future you will have more options and if there is anything I can do to help you, please let me know. If you have any doubts about your doctors, don't let it go get a second opinion.
Good Luck and keep on pushing for answers!
Denise0 -
Need Help with an Intermediate Phyllodes Tumor!denisegreen said:Phyllodes Diagnosis
Hey Cheyenne:
I was diagnosed back in December with the Phyllodes Tumor. I underwent surgery to remove it and then had to have a second surgery to remove more tissue. After the second surgery the pathology showed the tumor to be boarderline but they showed clear tissue all the way around the tumor. Thought I was done except for reconstruction and was in the process of setting up the reconstruction surgery when my six month checkup showed another tumor. It had returned within six months and this time my doctor recommended a mastectomy. When they took it out last month it was 7cm and was malignant. Because this tumor is so rare and that it reoccured so quickly my doctor sent me to an oncologist. My doctors were concerned because of how fast it reoccured, the size it was in such a short time and that it was malignant. They did however show clear tissue all the way around the tumor again this time and they also tested 3 lymph nodes and found no cancer present. The oncologist I saw thought that since it was so aggressive that he thought I should have radiation therapy, but he wanted to consult with a specialist in New York that handles rare cancers. Unfortunately they both recommended that I have radiation therapy as a precaution to make sure that it does not spread through my blood or come back in the chest wall. I don't want to scare you but you do need to keep a very close watch to make sure it does not reoccur and maybe you need to consult with an oncologist. They tell me chemo does nothing for this tumor but radiation has been done in the past and may help prevent it from spreading to the chest wall or lungs. I feel good about my treatment path, especially since my doctor consulted with the specialist in New York who has treated these tumors before. It is scary facing a disease that is so rare especially since there is no standard treatment. Good luck with your recovery process and I hope I helped!
Good Luck!
Denise
Hello, my name is Marietta and I am officially scared to death. My 21 year old sister has just removed an intermediate grade phyllodes tumor from her right breast and I am not sure she is getting the best treatment available. This all started a couple of months ago when my sister called me to tell me that she had a lump in her right breast. Eventually this lead to a sonogram and biopsy which told us that there were actually four masses in her breasts (two in her right and two in her left) but that they all appeared to be fibroids. They recommended surgery to remove the biggest fibroid (the big lump she felt in her right breast- 4.5cm by 4cm) and to leave everything else as is for the time being. So she had the surgery, and they actually were able to remove both masses in her right breast. Unfortunately, although one was just a fibroid the other has now been classified as an intermediate grade phyllodes tumor. The doctor told us that only 50% come back and that her recommendation was to wait and see with no additional surgery. This made me uncomfortable because I have done quite a bit of research on this condition and that did not seem like the right move to me. Although the phyllodes tumor was removed, because the initial diagnosis was wrong, no border was removed with it during the surgery which as I understand it would increase the likelihood for the tumor to return. So finally, I basically talked the surgeon into doing a second surgery this week to remove a border around where the phyllodes tumor was removed in the hopes that this will lessen the chance of the tumor's return. Am I doing the right thing? I feel like my doctor doesn't really know a lot about this condition and that I am teaching her about it myself. I live in New York and I truly want to do the right thing for my sister. I heard one of you (Denise) mention a cancer specialist in New York, could I please have his or her name? I need to speak to someone I can trust, because right now I am worried that I am dealing with a surgeon who has no idea about what this is, in addition, I am very uncomfortable with the fact that initial diagnosis was wrong, what if one or both of the tumors that they call "fibroids" in her left breast are actually phyllodes tumors too, they were wrong about her right side- why should I trust them now? Maybe the two masses in her left breast should be removed too since it seems like these people don't really know exactly what these things are until they take them out?
I'm hoping that after this second surgery on wednesday, a clear margin around where the intermediate phyllodes tumor in her right breast was removed will be the end to this nightmare. However its been a week since her initial surgery (tumor removal) and I am hoping that this second surgery is being done in time to have the desired effect. From what I know, taking a 1 to 2cm margin is usually done at the time of the tumor removal not a week later. Anyway, if anyone could recommend a specialist in New York or anywhere that I could go to for some guidance, I would VERY MUCH appreciate it! I hope that pushing this surgeon to do this second surgery was the right call, I only wish I had someone that I could trust to talk about it with, is that what you guys would have done? My sister means the world to me, I don't know what I would do if anything happened to her, my dad left us when we were teenagers and as the oldest of three girls I have done everything I can do to protect both of my sisters, I feel so helpless right now because it seems like I finally have found a problem that I can't totally handle by myself and thats what keeps me lying awake at night.
Best,
Marietta0 -
Marietta,Marietta.V said:Need Help with an Intermediate Phyllodes Tumor!
Hello, my name is Marietta and I am officially scared to death. My 21 year old sister has just removed an intermediate grade phyllodes tumor from her right breast and I am not sure she is getting the best treatment available. This all started a couple of months ago when my sister called me to tell me that she had a lump in her right breast. Eventually this lead to a sonogram and biopsy which told us that there were actually four masses in her breasts (two in her right and two in her left) but that they all appeared to be fibroids. They recommended surgery to remove the biggest fibroid (the big lump she felt in her right breast- 4.5cm by 4cm) and to leave everything else as is for the time being. So she had the surgery, and they actually were able to remove both masses in her right breast. Unfortunately, although one was just a fibroid the other has now been classified as an intermediate grade phyllodes tumor. The doctor told us that only 50% come back and that her recommendation was to wait and see with no additional surgery. This made me uncomfortable because I have done quite a bit of research on this condition and that did not seem like the right move to me. Although the phyllodes tumor was removed, because the initial diagnosis was wrong, no border was removed with it during the surgery which as I understand it would increase the likelihood for the tumor to return. So finally, I basically talked the surgeon into doing a second surgery this week to remove a border around where the phyllodes tumor was removed in the hopes that this will lessen the chance of the tumor's return. Am I doing the right thing? I feel like my doctor doesn't really know a lot about this condition and that I am teaching her about it myself. I live in New York and I truly want to do the right thing for my sister. I heard one of you (Denise) mention a cancer specialist in New York, could I please have his or her name? I need to speak to someone I can trust, because right now I am worried that I am dealing with a surgeon who has no idea about what this is, in addition, I am very uncomfortable with the fact that initial diagnosis was wrong, what if one or both of the tumors that they call "fibroids" in her left breast are actually phyllodes tumors too, they were wrong about her right side- why should I trust them now? Maybe the two masses in her left breast should be removed too since it seems like these people don't really know exactly what these things are until they take them out?
I'm hoping that after this second surgery on wednesday, a clear margin around where the intermediate phyllodes tumor in her right breast was removed will be the end to this nightmare. However its been a week since her initial surgery (tumor removal) and I am hoping that this second surgery is being done in time to have the desired effect. From what I know, taking a 1 to 2cm margin is usually done at the time of the tumor removal not a week later. Anyway, if anyone could recommend a specialist in New York or anywhere that I could go to for some guidance, I would VERY MUCH appreciate it! I hope that pushing this surgeon to do this second surgery was the right call, I only wish I had someone that I could trust to talk about it with, is that what you guys would have done? My sister means the world to me, I don't know what I would do if anything happened to her, my dad left us when we were teenagers and as the oldest of three girls I have done everything I can do to protect both of my sisters, I feel so helpless right now because it seems like I finally have found a problem that I can't totally handle by myself and thats what keeps me lying awake at night.
Best,
Marietta
Welcome! I am
Marietta,
Welcome! I am sorry that your sister has been diagnosed witht this disease, because there is just not alot of information about it. I am having the same problem that you are having with your surgeon. Although mine has over 30 years of experience, I still am not reassured. I had a lumpectomy performed to remove a large lump in my left breast. The pathology comfirmed that it was a malignant phyllodes tumor, and because the thing had roots that had grown throughout my breast, my surgeon recommended a mastectomy. This was a very fast growing tumor, and I was taking no chances. So, according to him, once the breast was gone, so was the cancer. I am not to comfortable with that, so am now in the process of getting a second opinion. I wasn't even referred to an oncologist.
A "wait and see" approach with this is not a good idea. Because it is such a rare type of cancer, there is not a lot of info available, and I feel that your sisters doctor is not very knowlegable. Yes, I think you did the right thing in pushing for the other surgery. As I am finding out, you have to push for the proper care, especially with this. Denise mentioned a specialist in New York, maybe she will be able to get you that doctors name. We will keep searching and asking til we get through this. I will be praying for your sister. Best wishes to you both. Keep us posted on what you find out! Wish I had more advice to offer, Im sorry. Hang in there.
Hugs
Cheyenne0 -
Bumping this thread for thecheyennedawn said:Marietta,
Welcome! I am
Marietta,
Welcome! I am sorry that your sister has been diagnosed witht this disease, because there is just not alot of information about it. I am having the same problem that you are having with your surgeon. Although mine has over 30 years of experience, I still am not reassured. I had a lumpectomy performed to remove a large lump in my left breast. The pathology comfirmed that it was a malignant phyllodes tumor, and because the thing had roots that had grown throughout my breast, my surgeon recommended a mastectomy. This was a very fast growing tumor, and I was taking no chances. So, according to him, once the breast was gone, so was the cancer. I am not to comfortable with that, so am now in the process of getting a second opinion. I wasn't even referred to an oncologist.
A "wait and see" approach with this is not a good idea. Because it is such a rare type of cancer, there is not a lot of info available, and I feel that your sisters doctor is not very knowlegable. Yes, I think you did the right thing in pushing for the other surgery. As I am finding out, you have to push for the proper care, especially with this. Denise mentioned a specialist in New York, maybe she will be able to get you that doctors name. We will keep searching and asking til we get through this. I will be praying for your sister. Best wishes to you both. Keep us posted on what you find out! Wish I had more advice to offer, Im sorry. Hang in there.
Hugs
Cheyenne
Bumping this thread for the newbie expresslove. I hope this helps you some!
HUGS0 -
Denisedenisegreen said:Hey Cheyenne:
I am having reconstruction, but the radiation will be putting a hold on the final stages of the reconstruction by about 6 months. My general surgeon did the mastectomy and then my plastic surgeon finished with the placement of the tissue expanders all in the same surgery. When the second tumor was found I was in the process of reconstruction then, to even both up. But we found the tumor first and had to do the mastectomy. I opted to have both sides taken just because I didn't want to face it possibly spreading to my right side or any other issues. I had fibrocystic tissue in the right side and already had a scare on that side before all of this happened. It may have been a radical choice but I feel better knowing that I have tried to do everything I can to keep this from spreading or coming back. I hope that in the future you will have more options and if there is anything I can do to help you, please let me know. If you have any doubts about your doctors, don't let it go get a second opinion.
Good Luck and keep on pushing for answers!
Denise
I'm sorry that your reconstruction got pushed back in order to deal with this annoying, and scary situation. But, I trust that you will recover quickly and will be able to get back on track. Just be patient and hang in there. I think you made the right decision is having the other side taken too. Better to be safe. I appreciate all your help and advice. I have an appointment on Friday with my primary care doctor to talk about some referrals. I will let you know how that goes. Keep me posted about how you are feeling as well. Good luck and take care.
Cheyenne0 -
Feeling bettercheyennedawn said:Marietta,
Welcome! I am
Marietta,
Welcome! I am sorry that your sister has been diagnosed witht this disease, because there is just not alot of information about it. I am having the same problem that you are having with your surgeon. Although mine has over 30 years of experience, I still am not reassured. I had a lumpectomy performed to remove a large lump in my left breast. The pathology comfirmed that it was a malignant phyllodes tumor, and because the thing had roots that had grown throughout my breast, my surgeon recommended a mastectomy. This was a very fast growing tumor, and I was taking no chances. So, according to him, once the breast was gone, so was the cancer. I am not to comfortable with that, so am now in the process of getting a second opinion. I wasn't even referred to an oncologist.
A "wait and see" approach with this is not a good idea. Because it is such a rare type of cancer, there is not a lot of info available, and I feel that your sisters doctor is not very knowlegable. Yes, I think you did the right thing in pushing for the other surgery. As I am finding out, you have to push for the proper care, especially with this. Denise mentioned a specialist in New York, maybe she will be able to get you that doctors name. We will keep searching and asking til we get through this. I will be praying for your sister. Best wishes to you both. Keep us posted on what you find out! Wish I had more advice to offer, Im sorry. Hang in there.
Hugs
Cheyenne
Cheyenne,
Thank you for your kind words. I am glad that you agree with my choice of pushing for the second surgery. I think that in your case, getting a second opinion can only benefit you, and I am happy that you decided not to take any chances by having a mastectomy. In the long run this is probably the best thing you could have done to ensure a long and healthy life for yourself. Stay strong and I will keep you posted with the aftermath of tomorrow's surgery.
Best,
Marietta0 -
Thanks survivorbc09! Yousurvivorbc09 said:Bumping this thread for the
Bumping this thread for the newbie expresslove. I hope this helps you some!
HUGS
Thanks survivorbc09! You are too sweet....
0 -
Thanks MariettaMarietta.V said:Feeling better
Cheyenne,
Thank you for your kind words. I am glad that you agree with my choice of pushing for the second surgery. I think that in your case, getting a second opinion can only benefit you, and I am happy that you decided not to take any chances by having a mastectomy. In the long run this is probably the best thing you could have done to ensure a long and healthy life for yourself. Stay strong and I will keep you posted with the aftermath of tomorrow's surgery.
Best,
Marietta
I just saw this post, I hope your sisters surgery went well today. Keep me posted on how she is doing. This is such a scary and confusing journey, all we can do is do the best that we can, and trust our decisions. I think you did make the best decision. And, I believe that I made the best decision for me. But, I am not happy with my follow up care, so I am dealing with that. Just don't give up in your quest for answers! Tell your sister to hang in there. This will get better. She is very lucky to have a sister like you, who is there for her.
Take care,
Cheyenne0 -
*bump*cheyennedawn said:Thanks Marietta
I just saw this post, I hope your sisters surgery went well today. Keep me posted on how she is doing. This is such a scary and confusing journey, all we can do is do the best that we can, and trust our decisions. I think you did make the best decision. And, I believe that I made the best decision for me. But, I am not happy with my follow up care, so I am dealing with that. Just don't give up in your quest for answers! Tell your sister to hang in there. This will get better. She is very lucky to have a sister like you, who is there for her.
Take care,
Cheyenne
*bump*0
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