No Bone Scan??

TylersMom1
TylersMom1 Member Posts: 57
edited March 2014 in Breast Cancer #1
Hi everyone,

I was diagnosed with Stage II breast cancer with one positive lymph node on April 25th. I had four rounds of AC, 4 rounds of Taxol and then 33 radiation treatments. I asked my doctor about having a bone scan to ensure there was no metastasis. He said that with only one node positive it is very unlikely and they usually do not perform them on people with only one node positive (I'm sure it is an insurance thing). Has anyone else had a similar situation? I feel like my doctor has been very proactive with my treatment but I am alittle nervous about no further testing.

I wish I had found this page earlier in my treatment. I enjoy hearing all your questions and comments.

Comments

  • jeancmici
    jeancmici Member Posts: 665 Member
    I had the same diagnosis and treatment as you with one node positive. I have never had a bone scan. I finished my radiation on Sept. 24-01 - operated on Jan 2 -01. That pretty much took care of 2001! Tamoxifen I started on 9/27/01 for 5 years.

    I will not get a bone scan unless I have symptoms and/or I demand one. But this is not an insurance issue - it is medical protocol - the latest care advisories follow our treatment so I guess I would say "Relax". I know - easier said than done! :-)
  • bc2miraclebaby
    bc2miraclebaby Member Posts: 32 Member
    It is understandable for you to want to look into the possibility of metastasis.With that being a fact I hope you'll consider this. As a 10 year survivor, having had a recurrence in just under 3 years, I have been through a broad range of fears and realities.I hope you will be able to give your body time to heal and return to a near normal state. I am guessing that since your treatment was so recent, your doctor wants to hold off on the bone scan till things settle down for your body. It took me about 6 mos. to feel as if I had not done the chemo.Most likely? your body is still repairing the effects as well?The Taxol is known for bone pain as a residual side effect.I was node neg.(12 neg.)and the recurrence happened to land in both lungs and the sternum, but I had no reason to suspicion anything until around the 3rd year when I felt a tingling in the collarbone area.A ct scan seemed to be the best test for me as the dye also lands in the area of change as well as the bone scan. I think the ct scan is a more detailed result showing the smallest changes sooner than a bone scan. Have you considered asking for a ct scan? Either way, it is important to acknowledge the need to allow yourself to mend.It is also normal to be apprehensive about every ache and pain but so many of those are normal everyday , stress/human/ related things too.Alot of us tend to stress out over these symptoms near our "check up" times too.The time following the treatments also causes anxiety because we feel as if we are ON OUR OWN by not being monitored so closely. It is normal to feel this way.It is good to be watchful for changes,but try hard not to focus too closely on "stink'in think'in,. My Best To You. Debbie
  • banker
    banker Member Posts: 317 Member
    I am a 2 time survivor of BC, both times node neg.,stage 1, ER neg. In both cases my doctor recommended a bone scan. I am glad he did. I am sure each doctor feels different about this. My scans were done about 2 mo after chemo ended. Hope this helps. Take care Emmi
  • TylersMom1
    TylersMom1 Member Posts: 57
    jeancmici said:

    I had the same diagnosis and treatment as you with one node positive. I have never had a bone scan. I finished my radiation on Sept. 24-01 - operated on Jan 2 -01. That pretty much took care of 2001! Tamoxifen I started on 9/27/01 for 5 years.

    I will not get a bone scan unless I have symptoms and/or I demand one. But this is not an insurance issue - it is medical protocol - the latest care advisories follow our treatment so I guess I would say "Relax". I know - easier said than done! :-)

    Hi Jeancmici,

    It's nice meeting someone with the same diagnosis (not that I would wish this on anyone). Wishing us both a happy and HEALTHY year in 2003!
  • TylersMom1
    TylersMom1 Member Posts: 57

    It is understandable for you to want to look into the possibility of metastasis.With that being a fact I hope you'll consider this. As a 10 year survivor, having had a recurrence in just under 3 years, I have been through a broad range of fears and realities.I hope you will be able to give your body time to heal and return to a near normal state. I am guessing that since your treatment was so recent, your doctor wants to hold off on the bone scan till things settle down for your body. It took me about 6 mos. to feel as if I had not done the chemo.Most likely? your body is still repairing the effects as well?The Taxol is known for bone pain as a residual side effect.I was node neg.(12 neg.)and the recurrence happened to land in both lungs and the sternum, but I had no reason to suspicion anything until around the 3rd year when I felt a tingling in the collarbone area.A ct scan seemed to be the best test for me as the dye also lands in the area of change as well as the bone scan. I think the ct scan is a more detailed result showing the smallest changes sooner than a bone scan. Have you considered asking for a ct scan? Either way, it is important to acknowledge the need to allow yourself to mend.It is also normal to be apprehensive about every ache and pain but so many of those are normal everyday , stress/human/ related things too.Alot of us tend to stress out over these symptoms near our "check up" times too.The time following the treatments also causes anxiety because we feel as if we are ON OUR OWN by not being monitored so closely. It is normal to feel this way.It is good to be watchful for changes,but try hard not to focus too closely on "stink'in think'in,. My Best To You. Debbie

    Hi Debbie,

    Thank you for the reply. I am assuming you are cancer free from your recurrence since you are now a 10 year survivor; congratulations!
  • TylersMom1
    TylersMom1 Member Posts: 57
    banker said:

    I am a 2 time survivor of BC, both times node neg.,stage 1, ER neg. In both cases my doctor recommended a bone scan. I am glad he did. I am sure each doctor feels different about this. My scans were done about 2 mo after chemo ended. Hope this helps. Take care Emmi

    Hi Emmi,

    I am curious as to what part of the country you live in?
    Thanks, Cheryl
  • bobbiejo
    bobbiejo Member Posts: 23
    I am 33 and was diagnosed with Stage 1B with a micro amount in one lymph node. I had 6 rounds of AC and Taxotere together and 33 radiation treatments. My doctor did a CT scan and bone scan before my lumpectomy and everything else was fine. I finished chemo in November and radiation in February. I go for my first check with the breast surgeon and oncologist next week. I am getting a little anxious. One day at a time. We are all here for each other.
    Bobbie Jo
  • hummingbyrd
    hummingbyrd Member Posts: 950 Member

    Hi Emmi,

    I am curious as to what part of the country you live in?
    Thanks, Cheryl

    Hi Cheryl, I was diagnosed w/ bc June 2000 had 13/27 + lymph nodes, lumpectomy, same chemo as you and 33 rad treatments. I'm a Physician Assistant so of course knowledge can be a two edge sword when you become the patient and not the 'medical professional'. With this in mind, knowing that bc mets most commonly go to BBLL (brain,bone,liver,lungs) I had CT of lungs,abd and bone scan 1 week after surgery, all clear! Course mine was more advanced than yours since I had more + lymph nodes.
    I completed treatment in April 2001 (chemo)and rad about May 2001. I had a CEA (tumor marker) drawn in June and August, it went from 5 to 9 to 14, less than 3 being normal. Doc ordered a CT of lung,abd and mammo. Now I knew I wasn't having any problems w/ my brain (gotta have one for that! LOL), BUT I did want a bone scan. He said 'no, don't have any bone pain'. I said 'I'm adament about it, I want a bone scan!'
    Well, guess what? Had a tiny (2 mm) spot that was malignant in left breast, removed by 'spotectomy' not even big enough to call a lump....AND a bone met to right arm. The bone scan was initially reported neg, it was only because I'm a PA and was waiting for mammo films to be packaged that the Rad MD and I looked at bone scan again! That's when she picked up on slightly darker area in arm.
    NOT! I JUST HAVE TO SAY AT THIS POINT THE ABOVE OCCURRANCES WERE NOT HAPPENSTANCE, THEY WERE ORCHESTRATED BY THE GRACE OF GOD!
    My point being, if you are being lead to get a bone scan, even if it's negative, and just for your peace of mind...I would insist on it! You can get it, especially if you are having ANY persistant bone pain ANYWHERE.
    Also have to add I've had another met to low back 10/01 w/ rad. Those tumor markers I mentioned...well don't know what to say about that, because we did them, and they went up, I had the complete diagnostic work up in August 2001. TM's came down to normal after all treatment, then 2 months later in Dec 2001 they start going up again. Have had 3 complete work ups since then, all neg thank God! Why are markers going up? Don't know. Why did they go up first time? Don't know. I do know had we not checked them I wouldn't have had such a thorough work up. Baylor College of Med said this week they don't even do them, not reliable indicators. Bottom line, every cancer is unique to every person...so...best advice I can give 'go with your gut feeling' or in my case it's my God feeling. He is my Physician and no way could I find a better one. Sorry to be so windy, but cancer's not an easy question to answer. God bless. hummingbyrd
  • minnie112256
    minnie112256 Member Posts: 49
    I had Stage 1 Breast cancer with neg nodes and my doctor did a scan before my chemo. It helped to reassure me that the cancer had not spread. Ida
  • jeancmici
    jeancmici Member Posts: 665 Member

    Hi Emmi,

    I am curious as to what part of the country you live in?
    Thanks, Cheryl

    Emmi and I both get treatment in the same city - Buffalo, NY. I went to the comprehensive cancer center - she did not. Thus we have doctors with different outlooks on bone scans. Seems even if bone cancer is found, it is not treated until symptoms appear which would cause one to wonder about the need for an early scan. Sometimes it is just to make the patient feel better or forestall a future lawsuit. You have trusted your doctor thus far - if you get really antsy, he may do a bone scan just to pacify you. Keep us informed and good luck.

    Jean
  • TylersMom1
    TylersMom1 Member Posts: 57

    Hi Cheryl, I was diagnosed w/ bc June 2000 had 13/27 + lymph nodes, lumpectomy, same chemo as you and 33 rad treatments. I'm a Physician Assistant so of course knowledge can be a two edge sword when you become the patient and not the 'medical professional'. With this in mind, knowing that bc mets most commonly go to BBLL (brain,bone,liver,lungs) I had CT of lungs,abd and bone scan 1 week after surgery, all clear! Course mine was more advanced than yours since I had more + lymph nodes.
    I completed treatment in April 2001 (chemo)and rad about May 2001. I had a CEA (tumor marker) drawn in June and August, it went from 5 to 9 to 14, less than 3 being normal. Doc ordered a CT of lung,abd and mammo. Now I knew I wasn't having any problems w/ my brain (gotta have one for that! LOL), BUT I did want a bone scan. He said 'no, don't have any bone pain'. I said 'I'm adament about it, I want a bone scan!'
    Well, guess what? Had a tiny (2 mm) spot that was malignant in left breast, removed by 'spotectomy' not even big enough to call a lump....AND a bone met to right arm. The bone scan was initially reported neg, it was only because I'm a PA and was waiting for mammo films to be packaged that the Rad MD and I looked at bone scan again! That's when she picked up on slightly darker area in arm.
    NOT! I JUST HAVE TO SAY AT THIS POINT THE ABOVE OCCURRANCES WERE NOT HAPPENSTANCE, THEY WERE ORCHESTRATED BY THE GRACE OF GOD!
    My point being, if you are being lead to get a bone scan, even if it's negative, and just for your peace of mind...I would insist on it! You can get it, especially if you are having ANY persistant bone pain ANYWHERE.
    Also have to add I've had another met to low back 10/01 w/ rad. Those tumor markers I mentioned...well don't know what to say about that, because we did them, and they went up, I had the complete diagnostic work up in August 2001. TM's came down to normal after all treatment, then 2 months later in Dec 2001 they start going up again. Have had 3 complete work ups since then, all neg thank God! Why are markers going up? Don't know. Why did they go up first time? Don't know. I do know had we not checked them I wouldn't have had such a thorough work up. Baylor College of Med said this week they don't even do them, not reliable indicators. Bottom line, every cancer is unique to every person...so...best advice I can give 'go with your gut feeling' or in my case it's my God feeling. He is my Physician and no way could I find a better one. Sorry to be so windy, but cancer's not an easy question to answer. God bless. hummingbyrd

    Hi Hummingbyrd,

    Wow, you have been through alot but it sounds like you are doing well now; thank the good lord. I'm sure my doctor has talked about CEA but I don't recall it. Thank goodness my husband has gone to all my appointments with me. They throw so much information at you that it is hard to comprehend it all. I will definitately ask him about CEA again at my next checkup next month. Thank you for your response and wishing you the best. Cheryl
  • banker
    banker Member Posts: 317 Member

    Hi Emmi,

    I am curious as to what part of the country you live in?
    Thanks, Cheryl

    I live in NY State, south of Buffalo NY
    Emmi
  • pebbles
    pebbles Member Posts: 1
    Hi, My name is Chloe Ann and you are wondering about No Bone Scan. So am I, not for me but for you. I was diagnosed 15 years ago with Stage 11 Breast Cancer and after my surgery, I elected to have a mastectomy, a bone scan was done, and the following year another one was also done. I, like you, had one lymph node positive out of 19 removed. A bone scan was done after I recovered from my surgery (I elected to have a mastectomy) and another one was done one year later. After that, if I complained of a problem that might suggest bone cancer, scans were also done then. Twice if I am correct. After the first two scans the doctor stopped the routine scans and watched the bones through the blood work. An oncologist can do that. Even though I only had one node that was positive, the bone scans and also one liver scan was done as a routine. In your position, I would want a bone scan done, if only to ease my mind. This was 15 years ago, and perhaps things have changed, but I always prefer being safe rather than sorry. I suppose I could have refused, but then it was standard procedure even with only one node positive. Five years later I found a BB sized tumor in the other breast, it was not positive, but I insisted upon a second mastectomy because I had Fibro Cystics Disease and the mammogram could not see even a large tumor. Doctors are not happy when the patient asks for a second mastectomy, since I knew that a mammogram was worthless to me. After much discussion a second mastectomy was done (a simple mastectomy). I was treated with Chemotherapy, since I had decided on the surgery and did have one positive node. The second surgery revealed nothing, but did help to relieve my mind. I have been told, by other doctors, that I am alive today because I had the best there was. Fifteen years is a long time, and I am sure procedures have changed, but if no bone scan is done, who pays if something is wrong? You do. It would seem to me that, if you want the scan done to make you feel better, it should be the obligation of that doctor to arrange for it to be done. It is a very simple procedure, takes a few hours, since you have to drink a lot for a certain length of time, and they do inject a non reactive dye in, some hours before the scan is done. My doctor was not happy doing the second mastectomy, but due to the history of the first cancer, I was within my right to ask for it. You have that same right. If your are uncomfortable tell the doctor, and if he refuses find one that will do it. This has always been a test I dreaded with every thing in my body, but when the results come back negative, the sense of relief is greater than most people can imagine. I was also treated with Tamoxifen for seven years (now they would probably stop it after five year.) It is used if you are found to be estrogen positive (your body likes estrogen to grow cancer.) The drug stops the body from making estrogen. I had already had a hysterectomy, so I was not making estrogen that way, but other things do make it too. If it is an insurance thing, as you think, a doctor can get around that, because it is his obligation to protect you, and your obligation to get the best help you can. I can see that this is on your mind, and you are not comfortable. Every cancer patient has this feeling, you are not alone. You are never alone. I have had two mastectomies and l5 years have past. The doctor will not call a cure for me until 20 years have past. Once again, you are uncomfortable with your care, if he is right that is wonderful, if he is wrong, you pay and I feel that too many women have already paid with their lives. Listen to your doctor, but always follow your feelings, get what you feel you need. Put things out in front of you to live for, I lived to see my daughter graduate college, I lived to see both my children married, and to dance at my daughter's wedding. I have lived to be a grandmother, now I live to make a memory. Remember it is OK to laugh, right in the face of your illness, a sense of humor is a necessity and can be found. Remember too that everyone does not die, we live to see the sun rise each day. You are not alone, there are a lot of us, always willing to extend a hand in friendship and love. Where you are going many of us have already been there and done that, and we are still here. Get what you want and feel you need, you can even stomp your foot, you are allowed, we are a very big group. Look around you, we are there. My very best wishes to you. Chloe Ann
  • TylersMom1
    TylersMom1 Member Posts: 57
    pebbles said:

    Hi, My name is Chloe Ann and you are wondering about No Bone Scan. So am I, not for me but for you. I was diagnosed 15 years ago with Stage 11 Breast Cancer and after my surgery, I elected to have a mastectomy, a bone scan was done, and the following year another one was also done. I, like you, had one lymph node positive out of 19 removed. A bone scan was done after I recovered from my surgery (I elected to have a mastectomy) and another one was done one year later. After that, if I complained of a problem that might suggest bone cancer, scans were also done then. Twice if I am correct. After the first two scans the doctor stopped the routine scans and watched the bones through the blood work. An oncologist can do that. Even though I only had one node that was positive, the bone scans and also one liver scan was done as a routine. In your position, I would want a bone scan done, if only to ease my mind. This was 15 years ago, and perhaps things have changed, but I always prefer being safe rather than sorry. I suppose I could have refused, but then it was standard procedure even with only one node positive. Five years later I found a BB sized tumor in the other breast, it was not positive, but I insisted upon a second mastectomy because I had Fibro Cystics Disease and the mammogram could not see even a large tumor. Doctors are not happy when the patient asks for a second mastectomy, since I knew that a mammogram was worthless to me. After much discussion a second mastectomy was done (a simple mastectomy). I was treated with Chemotherapy, since I had decided on the surgery and did have one positive node. The second surgery revealed nothing, but did help to relieve my mind. I have been told, by other doctors, that I am alive today because I had the best there was. Fifteen years is a long time, and I am sure procedures have changed, but if no bone scan is done, who pays if something is wrong? You do. It would seem to me that, if you want the scan done to make you feel better, it should be the obligation of that doctor to arrange for it to be done. It is a very simple procedure, takes a few hours, since you have to drink a lot for a certain length of time, and they do inject a non reactive dye in, some hours before the scan is done. My doctor was not happy doing the second mastectomy, but due to the history of the first cancer, I was within my right to ask for it. You have that same right. If your are uncomfortable tell the doctor, and if he refuses find one that will do it. This has always been a test I dreaded with every thing in my body, but when the results come back negative, the sense of relief is greater than most people can imagine. I was also treated with Tamoxifen for seven years (now they would probably stop it after five year.) It is used if you are found to be estrogen positive (your body likes estrogen to grow cancer.) The drug stops the body from making estrogen. I had already had a hysterectomy, so I was not making estrogen that way, but other things do make it too. If it is an insurance thing, as you think, a doctor can get around that, because it is his obligation to protect you, and your obligation to get the best help you can. I can see that this is on your mind, and you are not comfortable. Every cancer patient has this feeling, you are not alone. You are never alone. I have had two mastectomies and l5 years have past. The doctor will not call a cure for me until 20 years have past. Once again, you are uncomfortable with your care, if he is right that is wonderful, if he is wrong, you pay and I feel that too many women have already paid with their lives. Listen to your doctor, but always follow your feelings, get what you feel you need. Put things out in front of you to live for, I lived to see my daughter graduate college, I lived to see both my children married, and to dance at my daughter's wedding. I have lived to be a grandmother, now I live to make a memory. Remember it is OK to laugh, right in the face of your illness, a sense of humor is a necessity and can be found. Remember too that everyone does not die, we live to see the sun rise each day. You are not alone, there are a lot of us, always willing to extend a hand in friendship and love. Where you are going many of us have already been there and done that, and we are still here. Get what you want and feel you need, you can even stomp your foot, you are allowed, we are a very big group. Look around you, we are there. My very best wishes to you. Chloe Ann

    Hi ChloeAnn,

    Congratulations on your 15 years survival and thanks for your story. I know what you mean about listening to your body. If I had listened to the surgeon, I wouldn't have had surgery and would not have found the cancer. He thought it was a cyst and I could let it be and just watch it. I thank God every day that I listened to my inner voice. I have an appointment with my oncologist on Tuesday and will talk to him some more about the scan. Thanks again and take care...Cheryl
  • sandytrif525
    sandytrif525 Member Posts: 106
    Hi, I was diagnosed with stage 3 invasive lobular cancer. I had Ct scan and Bone scans before I even started chemo. I have since had the bone scan repeated once more and the Ct scan twice. I was nervous about having the tests, but better knowing than not. The tests came back clear. Hope this helps. sandy
  • marytres
    marytres Member Posts: 144
    Hi, I'm a 3 year survivor. Had a mastectomy, 14 nodes out of 18 positive, stage III. I had a bone scan before my operation and during my first year, I had another. I asked the oncologist why I don't have any more and he said that I have alot of bloodwork done and some of it is especially to see if there's anything wrong and if the bloodwork doesn't come out o.k. then he has other tests done such as the bone scan. Don't worry, trust your doctor and you'll be alright. Good luck and welcome to the club, you'll find alot of friends here who understand and give you support. Take care, hugs, Marie
  • CarolSusan
    CarolSusan Member Posts: 2
    My Dad had a huge 13 cm tumor removed along with his adrenal gland and kidney in March '01. He complained of hip pain July '02, x-rays were inconclusive, a bone scan in Sept showed a spot the Dr said could be cancer or arthritis, then he was admitted to ER with extreme hip pain in November, 3 shots of morphine and 1 bag of demerol drip before he would stop gripping the bed and crying out in agony. An x-ray showed 3 tumors on the bone in his hip. He has now been complaining of back pain and another bone scan was inconclusive although x-rays show a crushed vertebrae that is "suspicious". He is now waiting for a CT scan, the Dr. thinks the cancer may be in his spine. We are all sure of it, since his last x-ray, a few months ago showed his spine was fine. Just to let you know the bone scans don't seem to be worth too much as far as I'm concerned! Don't put all of your faith in them. The CT scans have been a lot more accurate.