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Sat, Jun 8 2:55pm · Bilateral breast cancer w sentinel node removal: Lymphedema prevention in Breast Cancer

I asked a hospital where I recently had some tests (it is associated with my cancer center and is directly across the street) why I could not get IVs and blood draws in my foot because I have had bilateral breast cancer with lymph nodes removed and was told that my situation was very rare, but if I did call them before procedures that they would make it available to me. I emphasized that since this particular hospital is a trauma center that it should just be available. They always want to use the arms. I know I am not a rarity. Please just respond if you have had bilateral breast cancer with lymph nodes removed. Also, are you having trouble getting properly cared for as hospitals and cancer centers do not want to seem to offer proper test procedures for us?

Sun, Jun 2 12:55pm · Bilateral breast cancer with lymph nodes removed/how are you treated? in Breast Cancer

I have had bilateral breast cancer with lymph nodes removed on both sides. I am scared to death of getting lymphedema. Has anyone found a treatment center that caters to us. I have repeatedly asked for IVs, BPs and blood draws to be done in other parts of my body and just get blank stares and they go ahead and use an arm or hand. I am so discouraged that no one seems to be interested in helping me not get lymphedema. Why is this not routinely part of my treatment….getting this stuff done in other body parts? Cancer centers that do not offer this are just oxymorons. Do they really care about the best care for people like me. So far, it does not seem so. I would like to hear how many people are being treated properly and how many, like me, are just a number and $$$$$$$.

Tue, May 28 10:08am · How many of you have changed oncologists because you did not like the? in Breast Cancer

I do not know what to do. My Onc sent me for CT scan with contrast because my ca 27.29 was 41.9 and the high figure for that is 40 on the test the cancer place did. First, the CT scan experience was a nightmare. They could not find a vein for the contrast die. I had already expressed to the Dr that I was concerned because I had bilateral breast cancer with nodes removed under both arms and that I was afraid of getting lymphedema. Obviously she did not care. After poking around in my hand, I told the tech to stop and she did immediately. Then a nurse called the Dr and the technician from H*** came in and only told me his name, Keith, and would not answer when I asked who he was. He then took the tourniquet band and snapped it a couple of times between his hands and told me he could tie the tightest tourniquet in the hospital. I said no, I am scared to death of getting lymphedema and the tourniquet cannot be tight and should not be on longer than 2 minutes. He said he had seen lymphedema and I really did not want to get that and how horrible it was and then proceeded to put on the extremely tight tourniquet and start feeling my arm trying to find a vein. I kept saying that it was too tight and it could not be on longer than 2 minutes and he kept saying "I know, I know" and continued feeling my arm. I do not know for a fact as I could not see a clock, but that tourniquet on for way over 2 minutes….my thoughts were it was 10 or more minutes and he never loosened it. I came out of there traumatized! The following day, I called the hospital where the test was done (it is a trauma center….now I know why!!!! they traumatize the patients) and told them that they needed to find someone to talk to me and that I would be there in an hour. Well, that worked out. The two people that interviewed me were supervisors and this Keith guy that did the tourniquet stuff is also a supervisor, but he was not there. No one of importance talked to me and they kept putting Keith on the phone when I called to tell them that I was coming. I invited him to come and talk with whoever I got and to bring his elastic band and I would put it on him as tight as I could get it and let him sit for a while and see how he liked it. The fact is that he has really jeopardized my arm and now I am even more scared than I was before. In retrospect I should have told the Onc that I did not want the test with contrast, but as the patient I thought I was doing the right thing for myself. Incidentally, I had IDC stage one…no lymph node involvement. It specifically says on the report that the ca 27.29 is intended for use in monitoring: 1) disease progression and/or response to therapy in patients with metastatic disease, and 2) disease recurrence in patients treated previously for stage II and III breast carcinoma who are clinically free of the disease. Neither one applied to me. I am not liking this Dr at all and question if she knows what she is doing. I also question why the ca 27.29 seems to be a routine blood test when going for cancer treatment no matter what type of breast cancer or stage. My cancer a year ago and have two Oncs since then. Part of me is afraid to bounce to another, but I do not want to stay with this one. I truly think this is a guessing game for most of these Drs and wonder if there is any place where you can get good, honest treatment with someone who knows what he/she is doing. If you look at some of my other posts, you will see why I left the first Onc. I am beginning to think that we are just guinea pigs and $$$$$$ for oncologists/cancer centers.

I just copied this post to you from the one I sent to Farmgirl1556.

Tue, May 28 10:04am · How many of you have changed oncologists because you did not like the? in Breast Cancer

I do not know what to do. My Onc sent me for CT scan with contrast because my ca 27.29 was 41.9 and the high figure for that is 40 on the test the cancer place did. First, the CT scan experience was a nightmare. They could not find a vein for the contrast die. I had already expressed to the Dr that I was concerned because I had bilateral breast cancer with nodes removed under both arms and that I was afraid of getting lymphedema. Obviously she did not care. After poking around in my hand, I told the tech to stop and she did immediately. Then a nurse called the Dr and the technician from H*** came in and only told me his name, Keith, and would not answer when I asked who he was. He then took the tourniquet band and snapped it a couple of times between his hands and told me he could tie the tightest tourniquet in the hospital. I said no, I am scared to death of getting lymphedema and the tourniquet cannot be tight and should not be on longer than 2 minutes. He said he had seen lymphedema and I really did not want to get that and how horrible it was and then proceeded to put on the extremely tight tourniquet and start feeling my arm trying to find a vein. I kept saying that it was too tight and it could not be on longer than 2 minutes and he kept saying "I know, I know" and continued feeling my arm. I do not know for a fact as I could not see a clock, but that tourniquet on for way over 2 minutes….my thoughts were it was 10 or more minutes and he never loosened it. I came out of there traumatized! The following day, I called the hospital where the test was done (it is a trauma center….now I know why!!!! they traumatize the patients) and told them that they needed to find someone to talk to me and that I would be there in an hour. Well, that worked out. The two people that interviewed me were supervisors and this Keith guy that did the tourniquet stuff is also a supervisor, but he was not there. No one of importance talked to me and they kept putting Keith on the phone when I called to tell them that I was coming. I invited him to come and talk with whoever I got and to bring his elastic band and I would put it on him as tight as I could get it and let him sit for a while and see how he liked it. The fact is that he has really jeopardized my arm and now I am even more scared than I was before. In retrospect I should have told the Onc that I did not want the test with contrast, but as the patient I thought I was doing the right thing for myself. Incidentally, I had IDC stage one…no lymph node involvement. It specifically says on the report that the ca 27.29 is intended for use in monitoring: 1) disease progression and/or response to therapy in patients with metastatic disease, and 2) disease recurrence in patients treated previously for stage II and III breast carcinoma who are clinically free of the disease. Neither one applied to me. I am not liking this Dr at all and question if she knows what she is doing. I also question why the ca 27.29 seems to be a routine blood test when going for cancer treatment no matter what type of breast cancer or stage. My cancer a year ago and have two Oncs since then. Part of me is afraid to bounce to another, but I do not want to stay with this one. I truly think this is a guessing game for most of these Drs and wonder if there is any place where you can get good, honest treatment with someone who knows what he/she is doing. If you look at some of my other posts, you will see why I left the first Onc. I am beginning to think that we are just guinea pigs and $$$$$$ for oncologists/cancer centers.

As far as your question on anastrozole, I am not having much difficulty. I have heard and read of people who are having a horrible time with it. I may just be lucky so far. One thing that I think is helping me is that I am physically active and walk a lot. You could try that. My thought is that if there is discomfort, then the medicine is probably working. As far as anxiety, I think that is a given for anyone with a cancer diagnosis. Quite frankly I have been wild. I have not had headaches.

Thank you for responding to my post. I would suppose some people do not even realize they have bad doctors. I am going to be my own advocate whether the Dr likes it or not.

Mon, May 27 7:49am · Stage 2 breast cancer: What treatments decisions did you have to make? in Breast Cancer

That is very interesting. I did have cancer in both breasts and was not told that. I know another person that was told that by her doctor. The second time around was even more terrifying…probably because I knew so much after the first time. May I ask what type of cancer you had…stage and all that?

Wed, May 22 6:57pm · How many of you have changed oncologists because you did not like the? in Breast Cancer

I found out I had stage 1 breast cancer last April. My former oncologist (this was my second time around…first BC in 2007) had retired. When I called the number for the group he belonged to, another group had started and was using that number. They said the former group no longer existed. I went with an oncologist with the new group/cancer center. It was later that I found out that not all the doctors from the old group had gone over to the new group. Well, the doctor I chose in the new group was a real jerk…we had words and I left and went to another practice. Well, I am wondering if I have again made a mistake. I have been with the new doctor since the end of January and in that amount of time I have been sent for a nuclear bone scan based on the alp and calcium readings on my bloodwork…these levels were just over the top limit for each. Well, I just went for bloodwork and my ca27.29 tumor marker was 49. The doctor called me and said she wanted a chest, abdomen and pelvic CT scan. I told her I wanted a second tumor marker test done which she grudgingly agreed to and 3 days later the level was 41.9. She still wanted the CT scan which I am having tomorrow. I am pretty scared. In addition the nurse that called to instruct me on the CT scan told me vague and missing info and when I called to make sure I had it right, she insisted she told all the right stuff to do. Then I went to pick up the barium yesterday and they asked me about blood work which I thought they had at the hospital associated with the cancer center as the doctors office had set it up. They did not have the blood info at the hospital but said I could have it done right then. I just had a CMP last Monday so the doctor should have known if I needed more blood work. Right then I told the person doing the paperwork with me that if they did not have the right bloodwork I was not getting it done and I would not be having the chest CT scan. I took the barium and left. The hospital person called me on my way home and told me the blood stuff was in order. Then tonite I was reading the instructions for the barium and the paper with that said to preregistration to call this number. I did and was told they do not do that anymore. They also told me I had to go to admitting when I get there tomorrow. WTH?! In Feb when I went for the bone scan I went right to radiology. Well apparently not this time. There are just too many inconsistencies and lack of communication. Also, I am wondering if I am going to continually have to go for tests. My cancer was simple stage 1 IDC, lumpectomy, radiation and anastrozole. There are too many “mistakes” already and I am wondering if I should move on. Has anyone had similar experiences and changed oncologists more than once. This probably does not app to people who have moved.

Sun, May 19 9:31am · BP, IVs and blood draws after bilateral breast cancer w/node removal in Breast Cancer

Thank you for your reply. I hope I did not upset you with my question. I do not know whether either you or I should be scared…all I know is that I cannot seem to get this out of my mind. I do know a lot of doctors do not use tumor markers….there are blood tests for a few for breast cancer, but what I hear about most after starting treatment is the ca 27.29. My best friend had BC and her doctor told her he did not use tumor markers because they are not dependable and only upset the patient. People like you and I just do not know. The first time I had BC, I saw the oncologist every 4 months for 5 years. Then he said I did not have to see him anymore. I did not have chemo, but did have radiation both times. I am thinking I should not be panicking…and neither should you after reading my narrative. We are all very different and all the doctors do different stuff. I feel great and have no complaints…even taking anastrozole, so am really devastated about this. I am not so worried about the test…more so that I will get lymphedema from the IV. I think if you are having strange stuff happening with your breast, you may want to go to your doctor and have it checked out. Waiting until September will only give you more time to think about it and to worry. Let’s hope other people respond to this topic so we can get more information.

Sun, May 19 8:35am · BP, IVs and blood draws after bilateral breast cancer w/node removal in Breast Cancer

I have had bilateral breast cancer with lumpectomy (both breasts) and lymph nodes removed on both sides. My tumor markers have risen…10 points over 4 months and my oncologist wants me to have chest and abdomen CT scans. I asked if I would have to have an IV and for the chest one, I would. I told them that was a problem because I needed to protect myself from lymphedema. I asked if there was anywhere else they could do and IV, other than my arms or hands. They did not deny me having the upper CT scan, BUT they did give me the choice of only having the abdominal one…they said it was up to me. You can’t tell me that the arms and hands are the only places an IV can be done on the body! Basically they are saying that if I do not want an IV, then I will not get the upper body CT scan. So, not only am I worried about the tumor marker stuff, I am scared to death of having an IV. My ca27.29 increased from 38.5 to 49 in 4 months. My former oncologist told me that my ca 27.29 seems to be set at around 40. Also, when I had the blood drawn for the test as well as the CMP, the technician stuck my feet 4 times,collected that blood and finally went with my hand to finish. I was dehydrated. I am waiting for the results of the second opinion on the ca27.29…I insisted on having it redone. This tech was excellent…did it in my hand with no tourniquet. It’s not bad enough having cancer twice already,..now I am scared to death I have it again. My first cancer was DCIS, the second was IDC….no lymph node involvement with either. I need opinions on all this! I am afraid.