New to boards-looking fo advice.
Hello. My name is Brandy and I am 37 years old. I was not sure which boards to post this to but I thought this might be the right one.
Starting in August, I started having problems with my back. I was having a lot of pain so I went to my doctor who tried to adjust me but could not because he was worried about my si joint being inflamed. Long story short, I have had several mri's that have shown a tumor on the front of my sacrum. I underwent a biopsy to be told that the results showed that it was suggestive of mestastic cancer from the breast or lung. I then went to see a oncologist who said that the cells were abnormal but all my CT scans do not show cancer.
I then had a follow up with my hematologist that I see for anemia who is also a oncologist. She has ran CT scans and mri of my beasts because I have had swollen lymph nodes and she had felt a lump in my breast before all this happened with my back. Nothing showed. She told me when she got the results from the biopsy that she didn't like the results because they were too vague. She is sending what is left of biopsy and slides to MD Anderson for a second opinion. She also referred me to a new neurosurgeon because my previous one (who said it was cancer) doesn't want to remove the tumor because of the complications of the surgery and my age. It is a complicated surgery since the tumor is on the front part of sacrum. The new Neurosurgeon said that he might do another biopsy and maybe should start radiation.
I have a family history of breast cancer on my mother's side. I have had the genetic testing and all was negative. I do not smoke and they have neve seen anything in my lungs.
I'm just confused and scared about all this. I was looking for other opinions of what I should do or what tests I should insist on.
Thank you all for listening and reading.
Brandy
Comments
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Welcome Brandy. I'm pretty
Welcome Brandy. I'm pretty new myself.
I think you're doing the right things so far. 2nd opinions are important. I would wait for the results from MD Andersen. They're an excellent facility and I believe they'll give you answers. Please update us on the results.
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Thank you Lilly9. The newLilly9 said:Welcome Brandy. I'm pretty
Welcome Brandy. I'm pretty new myself.
I think you're doing the right things so far. 2nd opinions are important. I would wait for the results from MD Andersen. They're an excellent facility and I believe they'll give you answers. Please update us on the results.
Thank you Lilly9. The new Neurosurgeon called today and they want to move forward with another biopsy only this time it will be an open biopsy. This makes me nervous but he said that they really need to test the other side of the tumor because they know they are not going to have enough cells. So until then I guess I will just wait and see what the results are from MD Anderson and the new biopsy. The oncologist I see was pushing for a biopsy too. I'm in horrible pain all the time and have trouble walking. I was terminated from my job because of my medical issues. They haven't been able to control my pain and just put me on gabapentin as well as my pain meds. I'm scared but just want a answer.
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Hope you get answers Brandyblweber2 said:Thank you Lilly9. The new
Thank you Lilly9. The new Neurosurgeon called today and they want to move forward with another biopsy only this time it will be an open biopsy. This makes me nervous but he said that they really need to test the other side of the tumor because they know they are not going to have enough cells. So until then I guess I will just wait and see what the results are from MD Anderson and the new biopsy. The oncologist I see was pushing for a biopsy too. I'm in horrible pain all the time and have trouble walking. I was terminated from my job because of my medical issues. They haven't been able to control my pain and just put me on gabapentin as well as my pain meds. I'm scared but just want a answer.
Sending prayers your way for answers soon. Let us know what the results are from MDA there should be something they can do for you for that pain. Stay Strong.
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Welcome to the CSN communityGlowMore said:Hope you get answers Brandy
Sending prayers your way for answers soon. Let us know what the results are from MDA there should be something they can do for you for that pain. Stay Strong.
I am glad that you find us. I think it is a right place to ask questions and get support.
If your sacrum tumor is has a metastatic nature from breast primary, a surgical removal is not used to treat it. Usually a systemic therapy is applied to addition to radiation to reduce pain.It is importatnt to know your patholgy report from bone biopcy if it it estrogen dependent, Her2+ or triple negative. Systemic therapy can include oral antiestrogen drugs, Chemo, Her2 drugs. Please try to find a complete answer and get treatment.
Good luck and keep us posted
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Hello and thank you for theNew Flower said:Welcome to the CSN community
I am glad that you find us. I think it is a right place to ask questions and get support.
If your sacrum tumor is has a metastatic nature from breast primary, a surgical removal is not used to treat it. Usually a systemic therapy is applied to addition to radiation to reduce pain.It is importatnt to know your patholgy report from bone biopcy if it it estrogen dependent, Her2+ or triple negative. Systemic therapy can include oral antiestrogen drugs, Chemo, Her2 drugs. Please try to find a complete answer and get treatment.
Good luck and keep us posted
Hello and thank you for the responses.
That is the thing with my 1st pathology report is that is doesn't talk about triple negative or anything like that. It talks about being immunopositive for cytokeratins (pan-keratin cocktail ae1/ae3. It also says that some of the tumor cells have immunorractivity for cytokeratims 7 but none for ck20or p63 so it suggests orgin for the mestastic tumor from breast or lung primary carcinoma. There are also scattered cd-68immunopositive small history test but the larger suspicious cells are cd68 immunonegative; not macrophages.
Also, there are no k167 marks but it states that this is unreliable since there was decalified sections.
I have had CT scans which are clean. They have found no other tumors so there is no primary.
So that is why they now want to do a second biopsy that is open plus see what MDA thinks
I'm so confused. I will say that I have a maternal aunt who had a bilateral mastectomy and was hormone receptive. I also have maternal great aunts that have had breast cancer. I have had a biopsy on my left breast which turned out to be a fibroedema. My breast are dense.
Thank you for the support and help. I really appreciate it.
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Thank you!MrsBob said:Prayers for you as you look
Prayers for you as you look for answers.
My oncologistThank you!
My oncologist called me today and said that the hospital does not have enough of cells from my first biopsy to send to MDA so she is agreeing with the neuro to do a second biopsy. It will be a open one and I'm really nervous because the tumor is on the front part (anterior) of my sacrum. I know they will be going in through my lower back and not the front. I just hope that we finally get an answer.
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The open biopsy for my sacrumblweber2 said:Thank you!
My oncologistThank you!
My oncologist called me today and said that the hospital does not have enough of cells from my first biopsy to send to MDA so she is agreeing with the neuro to do a second biopsy. It will be a open one and I'm really nervous because the tumor is on the front part (anterior) of my sacrum. I know they will be going in through my lower back and not the front. I just hope that we finally get an answer.
The open biopsy for my sacrum tumor is set for the 29th but the nuerosurgeon is trying to get me moved up to the 23rd. I hope we get answers soon and have a plan. I hate not having a plan and not knowing 100% if I have cancer or not.
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Postive thoughts, and prayers for you blweber2blweber2 said:The open biopsy for my sacrum
The open biopsy for my sacrum tumor is set for the 29th but the nuerosurgeon is trying to get me moved up to the 23rd. I hope we get answers soon and have a plan. I hate not having a plan and not knowing 100% if I have cancer or not.
... update us when possible regarding your open biospy on the 23rd.. okay.?
Gentle hugs,
Vicki Sam
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did you guys get bad results over the phone or in the office?
my biopsy results are suppose to be in monday, im wondering if it is cancer, they will tell me over the phone or bring me to the office. 34 years old, mam and ultrasound biopsy, solid mass with irregular borders 6mm. that is all i was told and an ultrasound on my armpit was done. i just dont know what to expect, and my hubby doesnt want me home alone if they call with bad news.
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test resultsmatikin said:did you guys get bad results over the phone or in the office?
my biopsy results are suppose to be in monday, im wondering if it is cancer, they will tell me over the phone or bring me to the office. 34 years old, mam and ultrasound biopsy, solid mass with irregular borders 6mm. that is all i was told and an ultrasound on my armpit was done. i just dont know what to expect, and my hubby doesnt want me home alone if they call with bad news.
Hard to say, I'm aware of both being done. My nurse practitioner did call me at home with my test results. And yes, I was really glad to have Lew's shoulder there to cry on.
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About a week after the corematikin said:thank you for the info
yea ive been hearing both ways, its sort of half half. i think im going to spend the day with my mother in law just in case they tell me over the phone.
About a week after the core biopsy of the tumor on my sacrum, the nuerosurgeon that I was seeing called on the phone to tell me that the results were showing suggestive of mestastic cancer from the breast or lung. I then saw my normal oncologist who I have been seeing for anemia issues and possible autoimmune disease as she is a hemotology as well. She told me in office that the biopsy was to vague and I wasn't completely diagnosed since all my CT scans have come back clean. That is why I have to get the surgical biopsy done. This nuerosurgeon called me and my oncologist called me at home in the evening to tell me this was the best way to go and that he is going to try to get as much of the tumor as he can. Once that is done and we have more of an idea of how to treat as they have not found a primary source yet.
My husband's brother had prostate cancer and then several years after he was told that it came back over the phone. He was developmentaly disabled and living on his own at that time. He ended up killing himself after the phone call. My husband was 15 yes old at the time and had a difficult time with his older brothers death. My husband was pretty furious that the doctor called me and told me over the phone but I was glad he did. I want to know asap so I can start treatment and have a plan. I don't like the unknown.
Prayers to you while you wait for answers. I am still waiting. I know it's hard and scary. Just take one day at a time and try not to think about it. I know that is easy said. I will be throwing myself into cleaning projects,books and swimming until I have the results from my upcoming procedure. Big hugs to you!!
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I just wanted to updateblweber2 said:About a week after the core
About a week after the core biopsy of the tumor on my sacrum, the nuerosurgeon that I was seeing called on the phone to tell me that the results were showing suggestive of mestastic cancer from the breast or lung. I then saw my normal oncologist who I have been seeing for anemia issues and possible autoimmune disease as she is a hemotology as well. She told me in office that the biopsy was to vague and I wasn't completely diagnosed since all my CT scans have come back clean. That is why I have to get the surgical biopsy done. This nuerosurgeon called me and my oncologist called me at home in the evening to tell me this was the best way to go and that he is going to try to get as much of the tumor as he can. Once that is done and we have more of an idea of how to treat as they have not found a primary source yet.
My husband's brother had prostate cancer and then several years after he was told that it came back over the phone. He was developmentaly disabled and living on his own at that time. He ended up killing himself after the phone call. My husband was 15 yes old at the time and had a difficult time with his older brothers death. My husband was pretty furious that the doctor called me and told me over the phone but I was glad he did. I want to know asap so I can start treatment and have a plan. I don't like the unknown.
Prayers to you while you wait for answers. I am still waiting. I know it's hard and scary. Just take one day at a time and try not to think about it. I know that is easy said. I will be throwing myself into cleaning projects,books and swimming until I have the results from my upcoming procedure. Big hugs to you!!
I just wanted to update everybody. I had my surgery last Thursday to remove some of the tumor that was on my sacrum. I have not got the results back yet they said it could be 3 days if they're pathology runs it but if the tumor is calcified again then they will send it to the mayo clinic which will take about 7 days.the doctor did say that the bone was discolored and he didn't say specifically what that meant but my husband didn't take it like it was something good.I am in quite a bit of pain they have me on several different pain medications and muscle relaxers to try to dull the pain. I have been sleeping a lot which I would assume will probably help with my recovery but as for right now I'm just really anxious to get the test results back and to find out if it is necessary that cancer and if so where the cancers coming from. I'm sure you all remember that they did do CT scans of my chest pelvis and breasts about 2 months ago and they did not find anything when we got the first pathology report from the the needle biopsy that was done so the doctor this time did say that they got he got quite a bit of material or of the tumor out so hopefully we get a bigger picture of what it is. But just keep praying for me and my recovery and I hope that I have some news soon. Thank you all for being so supportive.
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Praying for you and hopingblweber2 said:I just wanted to update
I just wanted to update everybody. I had my surgery last Thursday to remove some of the tumor that was on my sacrum. I have not got the results back yet they said it could be 3 days if they're pathology runs it but if the tumor is calcified again then they will send it to the mayo clinic which will take about 7 days.the doctor did say that the bone was discolored and he didn't say specifically what that meant but my husband didn't take it like it was something good.I am in quite a bit of pain they have me on several different pain medications and muscle relaxers to try to dull the pain. I have been sleeping a lot which I would assume will probably help with my recovery but as for right now I'm just really anxious to get the test results back and to find out if it is necessary that cancer and if so where the cancers coming from. I'm sure you all remember that they did do CT scans of my chest pelvis and breasts about 2 months ago and they did not find anything when we got the first pathology report from the the needle biopsy that was done so the doctor this time did say that they got he got quite a bit of material or of the tumor out so hopefully we get a bigger picture of what it is. But just keep praying for me and my recovery and I hope that I have some news soon. Thank you all for being so supportive.
Praying for you and hoping for good test results. Please keep us posted
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I really hate bad news. ILilly9 said:Praying for you and hoping
Praying for you and hoping for good test results. Please keep us posted
I really hate bad news. I kept thinking that with this last biopsy that it was going to be something unusual but not cancer since quite a few specialists that I have seen thought otherwise. Well,open biopsy of tumor on sacrum came back as carcnicoma of breast or lung on slides again for the second time. They had more tissue then just a needle biopsy this time since it was an open biopsy and the neurosirgeon made sure that he got enough tissue. He told me over the phone that surgery to remove this tumor off my sacrum is not going to help. He mentioned radiation and a pet scan since the previous ct scans in December 2014 and August 2014 all came up showing nothing. He also spoke with the oncologist that I have been seeing and I have a appointment today at 1pm.
My emotionals are all over the place. I am sad, angry, and terrified. Thye dont know where the cancer is. I am only 37 years old. I have a 13 year old and a 15 year old with special needs. I know that everyone on this board feels this but I just keep thinking about how freaking unfair this is. Its just so unfair. How in the world could this spread to my sacrum so fast with no tumors showing on any scans that I have had. I am so frustrated.
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"freaky, unfair" is putting it mildly ...blweber2 said:I really hate bad news. I
I really hate bad news. I kept thinking that with this last biopsy that it was going to be something unusual but not cancer since quite a few specialists that I have seen thought otherwise. Well,open biopsy of tumor on sacrum came back as carcnicoma of breast or lung on slides again for the second time. They had more tissue then just a needle biopsy this time since it was an open biopsy and the neurosirgeon made sure that he got enough tissue. He told me over the phone that surgery to remove this tumor off my sacrum is not going to help. He mentioned radiation and a pet scan since the previous ct scans in December 2014 and August 2014 all came up showing nothing. He also spoke with the oncologist that I have been seeing and I have a appointment today at 1pm.
My emotionals are all over the place. I am sad, angry, and terrified. Thye dont know where the cancer is. I am only 37 years old. I have a 13 year old and a 15 year old with special needs. I know that everyone on this board feels this but I just keep thinking about how freaking unfair this is. Its just so unfair. How in the world could this spread to my sacrum so fast with no tumors showing on any scans that I have had. I am so frustrated.
this is one adventure many do not want to participate in - but, we are not given no choice in the matter.
Please take notes, record doctor appointments and do not leave any appointment without having all your questions answered, or a plan of action -- that you approve of, and understand.
if necessary - get a 2nd opinion or third.
Best of luck -
Strength, Courage and HOPE for a Cure.
Vicki Sam
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Thank you Vicki.VickiSam said:"freaky, unfair" is putting it mildly ...
this is one adventure many do not want to participate in - but, we are not given no choice in the matter.
Please take notes, record doctor appointments and do not leave any appointment without having all your questions answered, or a plan of action -- that you approve of, and understand.
if necessary - get a 2nd opinion or third.
Best of luck -
Strength, Courage and HOPE for a Cure.
Vicki Sam
Things areThank you Vicki.
Things are moving fast. I see the doctor to start radiation on my sacrum tomorrow. My oncologist also took 12 of blood today and set up a bunch of appointments for this week. I am having an mri of my breasts tomorrow morning, then see radiation dr, then have CT scans of chest,abdomen and pelvis tomorrow. Then Thursday I am scheduled for mri of my head and then a bone scan. Friday, I see the nuerosurgeon with post op of my open biopsy then afterwards a mammogram and ultrasound of my breasts. They also have me set up for a colonoscopy and endoscope (to look inside my stomach, I guess).
My oncologist is really good about giving me copies of all my reports. The last biopsy said that the pathologist thinks breast or lung ( I have never smoked) and that eventually we will find the primary if not more mestastic lesions. I only have the one on the front of my sacrum now.
I have a special needs child so I am use to gathering all records from appointments and I actually file them physically and on a flash drive. I have started spread sheets of my blood work so I can get a visual of my counts over the months.
I'm so scared and trying to prepare the best I can.
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