in shock
Comments
-
I am so sorry Taiga. As theVickiSam said:Taiga .. so sorry you had to find us ..
I am sure you are running into walls, perhaps in a state of confusion, betrayal and even experiencing anger.
You will get thru THIS -- believe me...
Take some time and research all your options -- if possible take some to accompany to your appointments, along with a tape recorder -- so many topics and subjects along with med's are spoken about -- so it is important to go back via a recorder and see exactly what was said during these appointments -- this also helps with questions for your surgeon or doctor going forward.
Best of luck to you, prayers as well.
Strength, Courage and Hope.
Vicki Sam
I am so sorry Taiga. As the pink sisters said, you will get thru us and I hope that we can help you in some way.
Hugs and prayers,
Angie0 -
I'm sorry you had to jumplaughs_a_lot said:Sorry
Sorry you had to jump ship, but you landed where you need to be. Being a straight forward woman will be an asset as it tends to leave no stone unturned.
I'm sorry you had to jump ship too. I know what a shock it must have been. Try to stay positive and strong and come to us for support or just to have someone write back encouragement and help!
Hugs,Leeza0 -
I am very sorry Taiga.VickiSam said:Taiga .. so sorry you had to find us ..
I am sure you are running into walls, perhaps in a state of confusion, betrayal and even experiencing anger.
You will get thru THIS -- believe me...
Take some time and research all your options -- if possible take some to accompany to your appointments, along with a tape recorder -- so many topics and subjects along with med's are spoken about -- so it is important to go back via a recorder and see exactly what was said during these appointments -- this also helps with questions for your surgeon or doctor going forward.
Best of luck to you, prayers as well.
Strength, Courage and Hope.
Vicki Sam
I am very sorry Taiga. Being in shock and confusion is what we all have felt. Like Vicki Sam wrote, take your time and look at all of your options and treatments. Ask questions and try to have someone with you at your doctor appointments.
Good luck and praying for you,
Lex0 -
sorryVickiSam said:Taiga .. so sorry you had to find us ..
I am sure you are running into walls, perhaps in a state of confusion, betrayal and even experiencing anger.
You will get thru THIS -- believe me...
Take some time and research all your options -- if possible take some to accompany to your appointments, along with a tape recorder -- so many topics and subjects along with med's are spoken about -- so it is important to go back via a recorder and see exactly what was said during these appointments -- this also helps with questions for your surgeon or doctor going forward.
Best of luck to you, prayers as well.
Strength, Courage and Hope.
Vicki Sam
double post0 -
Welcoming you too Taiga tosinee said:welcome taiga
I know you never wanted to be here, but you will find warm loving women here, that will give you lots of support, encouragment and a safe place to land~hope the visit with the surgeon went well, and I hope you also have an oncologist handy...ask lots of questions and write down more when you think of them...you just got thrown in the river, and we are all tossing in life preservers, so ask us anything~and often...love and hugs to you...I have my first year behind me now....been through the chemo, then the surgery and the radiation~ as have a LOt of lovely women on here...hope you got some answers from the surgeon and your onco. Sinee
Welcoming you too Taiga to the site no one wants to join. Now that you are here though, prepare to get lots of love, support and help.
Wishing you good luck and sending prayers,
Debby0 -
Wow. So sorry to hear this Tauga.skipper54 said:Welcome aboard!
Sorry you had to join us but we're here for you. All the testing puts you on a roller coaster. Sending prayers for the right results.
I AGREE - TAKE SOMEONE WITH YOU AND/OR RECORD YOUR CONVERSATIONS
It sounds though that you are well informed about the disease, and do take a friend to write everything down. I heard on the news that they are no longer allowing Avastin to be used for breast cancer treatment. I wonder if they will continue to use it for other cancers.
Anyway, welcome to our group. you will find great support and information here.
Dee0 -
Welcome to the group andSIROD said:Two Kinds in One Breast
Hi Keely,
I had ductal and lobular carcinoma in one breast and only had one mastectomy. Mine only meant it was in the duct as well as the lobe. They could tell that it was lobular as they were signet ring cells. From what I understand signet ring cells are often found in lobular carcinoma in the breast.
You had a double whammy. I don't see why the insurance company won't pay for the test. It was after all two different kinds and in different area.
I do wish you the best, Keely as you go on to treatment.
Doris
Welcome to the group and wishing you the best of luck.
Hugs, Kylez0 -
Just to welcome you and todyaneb123 said:Wow. So sorry to hear this Tauga.
It sounds though that you are well informed about the disease, and do take a friend to write everything down. I heard on the news that they are no longer allowing Avastin to be used for breast cancer treatment. I wonder if they will continue to use it for other cancers.
Anyway, welcome to our group. you will find great support and information here.
Dee
Just to welcome you and to let you know that we're all here for you.
Hugs, Megan0 -
Tiaga, a warm welcome
but of course, we're saddened it's under this circumstance.
It just hit me, is there an "Idiot's book to Breast Cancer?" There are just so many questions and the feeling of just being lost. I'm so sorry you now have to deal with this.
We're all here for you.
Hugs,
Sylvia0 -
Skipper is right that it isskipper54 said:Welcome aboard!
Sorry you had to join us but we're here for you. All the testing puts you on a roller coaster. Sending prayers for the right results.
I AGREE - TAKE SOMEONE WITH YOU AND/OR RECORD YOUR CONVERSATIONS
Skipper is right that it is important to make sure someone is with you to hear everything. I know with me, my mind always seemed to just fizzle out, and, I was thankful my husband was always there with me for every appointment.
Hugs, Angie0 -
I was very angry to find outsea60 said:Tiaga, a warm welcome
but of course, we're saddened it's under this circumstance.
It just hit me, is there an "Idiot's book to Breast Cancer?" There are just so many questions and the feeling of just being lost. I'm so sorry you now have to deal with this.
We're all here for you.
Hugs,
Sylvia
I was very angry to find out that lobular is not found on mammo well. I would have insisited on an MRI. but I was told it wasnt standard. I had lobular the second time and had chemo, and am on tamoxifen. I also had a mastectomy and radiation. I think it may depend on the size of the tumor. Many of those institutions you mentioned are excellent. I dont have personal experience with them as I am in boston.
Breast cancer "likes" to go to the bones, liver, lungs, brain. I knew someone with lobular that it did metastisize to the abdomen and bones. My docs have told me that the estrogen blockers are more important than the chemo. She had mets before tamoxifen was widely used. It is my understanding that some types "tend" to go to certain places but this is not written in stone.
It stinks when you have to deal with this again, it seems like you have had your turn and you should be able to say "pass" But you have dealt with cancer once and you can do it again survive and thrive. HUGS0 -
I am so sorry that you hadcamul said:taiga
So sorry that you have to do this on top of the ovarian cancer! I am stage iv and like Nancy agree totally that this sucks, big time. I too am straight forward and want all the information yesterday. My breast surgeon told me to bring someone with me to my appointments so I wouldn't miss anything.
Hopefully someone will come forward who has the same dx that can help you more. This board is very supportive.
I will include you in prayers that they got this early.
Carol
I am so sorry that you had ovarian cancer and now you have bc. Cancer just plain sucks!
You've got the support here that you need and lots of prayers.
Hugs, Jan0 -
I hope you got yoursea60 said:Tiaga, a warm welcome
but of course, we're saddened it's under this circumstance.
It just hit me, is there an "Idiot's book to Breast Cancer?" There are just so many questions and the feeling of just being lost. I'm so sorry you now have to deal with this.
We're all here for you.
Hugs,
Sylvia
I hope you got your questions answered by your doctor. Please post an update to let us know what he said. I am so very sorry.
Hugs, Kylez0 -
I wish there was a book likesea60 said:Tiaga, a warm welcome
but of course, we're saddened it's under this circumstance.
It just hit me, is there an "Idiot's book to Breast Cancer?" There are just so many questions and the feeling of just being lost. I'm so sorry you now have to deal with this.
We're all here for you.
Hugs,
Sylvia
I wish there was a book like that Sylvia, or, just a book that had questions and answers in it that were actually helpful. I know my husband bought me several books on bc, but really, none of them helped me that much.
I know I found out what really concerned me right here on this board, which I am indebted to and grateful for.0 -
Hi Taigataiga said:My appt. with the breast surgeon
He's 99% sure it is lobular and hormone driven. I have an MRI today on both breasts to determine exactly how large the tumor in the right breast is and to make sure nothing is going on in the left breast. Since I have been on Avastin alone since Jan. (part of the clinical trial I WAS in for ovarian - I got kicked out this week LOL)he doesn't want to do any surgery for at least 6-8 weeks. In the meantime, if it is hormone driven, I'll be on a hormone blocker (can't remember the name)in hopes it shrinks the tumor. He said lobular doesn't respond to chemo well which explains why it's there depsite my chemo last year for ovarian and the year's worth of Avastin. He also said lobular tends to have "fingers" that branch out, so right now, based on the size, type and location, lumpectomy doesn't look like a good option, but we'll see in a couple months. That gives me time to get 2nd opinions - any suggestions? I'm in Springfield, MO. Was thinking Baylor (where the surgeon did his fellowship), Barnes/Wash U in St. Louis, MD Anderson, Cleveland Clinic, Memorial Sloan. I really liked the surgeon and my awesome gyn/onc got me right in to him.
Next question: have always been told I have really dense breasts - lots of women are told that. The surgeon told me mine are off-the-charts dense. He had never seen breasts that dense in a woman my age (51). So why did I even bother with mammograms in October 2010 and last month - given my history of ovarian cancer and how dense they are - why didn't they give me an ultrasound or MRI? The gist of his answer boiled down to money/what the insurance co. would approve. F^%$# the insurance company - if I had been given the option, or the info as to just how dense they were - I would have paid for it myself.
Sorry this is so long - but he also said lobular was one of the few (only?) breast cancers that spread to the abdominal cavity (not what I wanted to hear) and the bones. I have had terrible neck and shoulder pain since the beginning of the year when I started the Avastin as maintenance. 2 mos. ago I started having tailbone pain like a pinched sciatic nerve. So, my follow-up CT for ovarian scheduled for Dec. has been moved up to this Wed. and I will have a PET/CT to check me from head to toe.
I appreciate all the information and well wishes. You guys are great. I'll be spending my time flipping back and forth between the boards. I'm new at the breast cancer stuff but I'll educate myself just like I did with the OC. Will keep you posted and thanks again. Hope all of you are doing well.
I am glad that your visit went well.
I have never heard that lobular does not respond to Chemo. Many here, including myself undergone Chemo for lobular features. Please talk to a medical oncologist about it . I also think untill you have your pathology report to confirm hormone dependency , it is very difficult to make a treatment plan. My surgeon sent me to a medical oncologist to determine steps for my treatment.
Best wishes
New Flower0 -
Also just diagnosedNew Flower said:Being among 10% should not scary you
Sorry, that you have to deal with cancer again, You have been on the top of your health situation and have checked your lump very quickly and it will help treatment for sure. I agree with Nancy, take someone who can take good notes with you. We have several people on this board who have had two different primary cancer simultaneously, I am sure they will respond to your post soon
I was diagnosed with Lobular cancer (features) 3&1/2 years ago. Have had mastectomy, 6 cycles of Chemo and 40 radiations, currently in remission and taking Tamoxifen.
Wishing you the best.
Please keep us posted
New Flower
Thank you for your response. I also have the Lobular Cancer in 2 areas and probably 2 Quadrants- yet to be decided. I also have the ductal Cancer and it is in one lymph node that I know of. I was just diagnosed. I am trying to decide whether to hava mastectomy or a double mastectomy or try for the lumpectomy (may not be possible, since I have 5cm of Cancer) The second breast does not show Cancer, but then the first one did not either until I discovered the lump. I am still in shock because I have gone faithfully for my mammograms. Had my last one in May this year. Now, 6 months later I have Cancer in 3 places and 2 different kinds. I am waiting to hear from the surgeon again. Now, I wonder how long I will go through treatments and if I will survive this thing.
Any thoughts would be appreciated.0 -
Dense breaststaiga said:My appt. with the breast surgeon
He's 99% sure it is lobular and hormone driven. I have an MRI today on both breasts to determine exactly how large the tumor in the right breast is and to make sure nothing is going on in the left breast. Since I have been on Avastin alone since Jan. (part of the clinical trial I WAS in for ovarian - I got kicked out this week LOL)he doesn't want to do any surgery for at least 6-8 weeks. In the meantime, if it is hormone driven, I'll be on a hormone blocker (can't remember the name)in hopes it shrinks the tumor. He said lobular doesn't respond to chemo well which explains why it's there depsite my chemo last year for ovarian and the year's worth of Avastin. He also said lobular tends to have "fingers" that branch out, so right now, based on the size, type and location, lumpectomy doesn't look like a good option, but we'll see in a couple months. That gives me time to get 2nd opinions - any suggestions? I'm in Springfield, MO. Was thinking Baylor (where the surgeon did his fellowship), Barnes/Wash U in St. Louis, MD Anderson, Cleveland Clinic, Memorial Sloan. I really liked the surgeon and my awesome gyn/onc got me right in to him.
Next question: have always been told I have really dense breasts - lots of women are told that. The surgeon told me mine are off-the-charts dense. He had never seen breasts that dense in a woman my age (51). So why did I even bother with mammograms in October 2010 and last month - given my history of ovarian cancer and how dense they are - why didn't they give me an ultrasound or MRI? The gist of his answer boiled down to money/what the insurance co. would approve. F^%$# the insurance company - if I had been given the option, or the info as to just how dense they were - I would have paid for it myself.
Sorry this is so long - but he also said lobular was one of the few (only?) breast cancers that spread to the abdominal cavity (not what I wanted to hear) and the bones. I have had terrible neck and shoulder pain since the beginning of the year when I started the Avastin as maintenance. 2 mos. ago I started having tailbone pain like a pinched sciatic nerve. So, my follow-up CT for ovarian scheduled for Dec. has been moved up to this Wed. and I will have a PET/CT to check me from head to toe.
I appreciate all the information and well wishes. You guys are great. I'll be spending my time flipping back and forth between the boards. I'm new at the breast cancer stuff but I'll educate myself just like I did with the OC. Will keep you posted and thanks again. Hope all of you are doing well.
I am with you and am angry that they did not tell to have an MRI. Like you, I would have paid for it myself. I too, have both types of Cancer in one breast - not found by mammograms. One is lobular and one is ductal and is 5cm in 3 areas. So, we are probably looking at a mastectomy or possible double. I am waiting to hear from the surgeon.0 -
I am so sorry Taiga thatillona said:Also just diagnosed
Thank you for your response. I also have the Lobular Cancer in 2 areas and probably 2 Quadrants- yet to be decided. I also have the ductal Cancer and it is in one lymph node that I know of. I was just diagnosed. I am trying to decide whether to hava mastectomy or a double mastectomy or try for the lumpectomy (may not be possible, since I have 5cm of Cancer) The second breast does not show Cancer, but then the first one did not either until I discovered the lump. I am still in shock because I have gone faithfully for my mammograms. Had my last one in May this year. Now, 6 months later I have Cancer in 3 places and 2 different kinds. I am waiting to hear from the surgeon again. Now, I wonder how long I will go through treatments and if I will survive this thing.
Any thoughts would be appreciated.
I am so sorry Taiga that you've already gone thru one cancer and now have to go thru another. I am sending positive thoughts and lots of prayers to you. Keep us posted.
♥ Kristin ♥0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.7K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 395 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.3K Kidney Cancer
- 670 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 236 Multiple Myeloma
- 7.1K Ovarian Cancer
- 58 Pancreatic Cancer
- 486 Peritoneal Cancer
- 5.4K Prostate Cancer
- 1.2K Rare and Other Cancers
- 537 Sarcoma
- 727 Skin Cancer
- 652 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards