HER2 Support Group Forums - View Single Post - No rads under any circumstances it seems.

Chelee · 08-20-2006, 12:15 AM

Chrisy, I finally contacted a social worker down there that I was told to talk to if I every had a problem with any thing. I told her about having a MAJOR communication problem since day one. How I can't find things out and I feel I am NOT being treated as aggressively as others with my same stage and even lower. I told her my oncologist even noted in my records that I came in with TWO pages of questions one time. (These two pages where on 4 x 8 pieces of legal paper.) You know those LITTLE note pads. Well the social worker said she didn't care if I had 10 sheets of questions...that it IS my oncologist JOB to ANSWER all my questions...and answer them until I understand every bit of it.

I thought FINALLY...someone that will listen and actually MIGHT help me. I told her since day one I have had nothing but problems. I told this social worker I was putting MY LIFE IN THESE DOCTORS hands. I said I went into this TRUSTING them. I told her how I was promised that the TEAM would work so hard for my best possible outcome but haven't as far as I am concerned. And the MAJOR problem being NOT getting answers to my questions. She said she would see what she could do to help me. Hope she wasn't just patronizing me?

I told her how its been since Jan. 3rd when I had my surgery and I JUST NOW found out I had this "extra capsular invasion". I said thats NOT right of them to keep all this from me! Had I KNOWN all this from day one I would of had time to research, talk to other hospitals about this...do something. I said my medical team KNEW all this at the FIRST tumor board meeting. I said they DROPPED the ball on me and I am not very happy. Again...this is my LIFE we are talking about...I don't get a chance to have "do-overs". I said they make me feel like since I had a sticky situation that they haven't had to deal with...they just decided BACK THEN to do the minimum for me and be done with it. (She said she was sure that wasn't NOT it.) Yea right...how does she expect me to feel. Because I have a lower lung capacity and the absents of ribs...doesn't mean they should decide that I am TOO MUCH work to deal with and toss me out. I bet if I was THEIR sister, brother, Mother, daughter, son, etc...it would of been done completely DIFFERENT!

How I wish I could of WALKED out of here ALONG time ago. I hate HMO's that get you LOCKED down so you can't get out of them. ARGH.

My pulmonary doctor is the ONLY one I trust at present. I DO believe he has my best interest at heart unlike them. Had I NOT went to my pulmonary...my rads doctor was going to radiated my incision, axilla are, and collar bone with no problems even when I told him I was having trouble breathing. My pulmonary doctor is NOT part of this GROUP...he is a out of network doctor I got approval to see. So I am glad ONE person is looking out for me....I am just angry that they didn't see this problem along time ago.

Your RIGHT Christy....you said the SAME thing my pulmonary doctor said. "That if I can't breath...its not going to help to have my cancer gone". How come my pulmonary doctor and you can see that...but they sure didn't seem to care one way or the other.

I do believe your right that I HAVE to move forward. I have decided I can't have the radiation. My pulmonary really believes that will kill me. But I WANT the 2nd opinion for peace of mind...and to SEE if there was something that COULD of been done another way had we known and planned for this when I was first DX? The way this place I am going to has treated me...I want all the opinions from other cancer centers as possible. I am not happy with them. If I can SAVE one OTHER WOMEN from going through anything like I have...then I will feel good about this.

This place treats me and others like its a big production line...or MILL. Like we aren't people with feelings that are scared. Where is the compassion. Well...I can't say that about the infusion nurses...these women are by far THE BEST. I love them all. They DO CARE. So everyone here isn't bad.

(That goodness for them.)

Yes I did have the TCH...and I know that is a good regimen...but now that I KNOW I can't have rads...I can't help but feel I should of had AC to increase my odds since now they dropped the rads I needed that extra percent. (Although the extra risk of heart problems scares me with AC.) With a prognosis as mine...I needed more aggressive tx it seems to me. I am glad I did get the herceptin from day one like you said though....I PRAY that is doing its job with me. My last scans were clean...or so they told me?

Sorry I confused you about the anti-hormonal meds. Yes...when I was FIRST DX...I was told I was Er & Pr weakly positive. That was by some test called a "IHC". Something like that? My onc doc at that time said he will just go ahead and treat me like I am positive UNTIL he got my FISH back. I asked him what a FISH was. (When he got it back...it shows I am positive, or so he said?) Thats where I got LOST again too. I don't know how one can be WEAKLY positive...and later be positive? (Is one test better then another?)

In fact I have ASKED them HOW positive is my Er & Pr now that they did a FISH on me? I still don't know to this day and I have asked so many times ITS NOT FUNNY! I have a RIGHT to know! I got my records from them and I CAN'T find anything that says the EXACT number of how positive my Er & Pr is? I have some paper saying Her-2 by FISH results amplifed (4.4)....whatever that means? But my oncologist that I changed too...says I AM positive. Where can I FIND the actually number of HOW positive I am on this sheet? I don't see that it says it any where? I wonder if they are LYING to me about this too since they never tell me exactly *how* positive? They just tell me "your positive". Shouldn't it say like 50% on one, and 70% on another as an example? (Not just positive for both?)

So anyway...that is what I have to go on. They say my FISH says I am positive...but yet I haven't a clue HOW positive? I know the first paper they gave me said 15% of tumor is moderately/weakly reactive for estrogen & approximately 5% of tumor is strongly/moderately reactive for Progesterone receptor. Its SURE funny I can find % for Er and Pr on this one sheet...but NOT on any FISH test?

The oncologist I switched to down here says I am REAL positive. When I ask exactly how positive all I get is EXCUSES like "I will get that for you later". Or remind me and I will find that. Or I will get my nurse to run you a copy. I swear I am fed up with this! This has been a NIGHTMARE for me.

So all I know is I am SUPPOSE to be on either femara or tamoxifen. My onc says Femara...but my 2nd opinion onc at the other cancer center says tamoxifen since I was perimenopausal. The social worker had my onc doc call me this last Friday and she KNEW I was upset. So she said when I come in for herceptin Monday to have my infusion nurse take blood so she can see if I am peri or menopausal? I hope she isn't LYING about that too? Is there REALLY A TEST for this? I am sorry...but at this point I can't believe anything they tell me. My onc was going to JUST put me on femara no questions asked UNTIL I told her what the second opinion onc doc at the larger cancer center recommended. (See what I mean about his place NOT caring about me.)

All I know is I am SO HAPPY that this board is here because I just know I would of given up by now. They have just worn me out and took the fight out of me. This board is the only thing that keeps me going. You women and men here and just fantastic. You guys are the only thing that gives me any hope and encourages me to go on and fight. There are so many women here that have been through so MUCH worse and have such good attitudes that it makes me feel so bad even posting this stuff. But I get so upset and I have NO ONE to talk to or express my feelings too. My husband sure doesn't want to hear it. When cancer came into my world...everyone walked out.

You women at least are honest and tell me more then my own doctors and give me a direction to go in. You all give me more ideas of what I can do. At least I know I can get some answers here. I swear...without this board I would have no hope at all. Thanks Christy...I really appreciate your kind words.

Chelee

08-20-2006, 12:15 AM	#9
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Chrisy, I finally contacted a social worker down there that I was told to talk to if I every had a problem with any thing. I told her about having a MAJOR communication problem since day one. How I can't find things out and I feel I am NOT being treated as aggressively as others with my same stage and even lower. I told her my oncologist even noted in my records that I came in with TWO pages of questions one time. (These two pages where on 4 x 8 pieces of legal paper.) You know those LITTLE note pads. Well the social worker said she didn't care if I had 10 sheets of questions...that it IS my oncologist JOB to ANSWER all my questions...and answer them until I understand every bit of it. I thought FINALLY...someone that will listen and actually MIGHT help me. I told her since day one I have had nothing but problems. I told this social worker I was putting MY LIFE IN THESE DOCTORS hands. I said I went into this TRUSTING them. I told her how I was promised that the TEAM would work so hard for my best possible outcome but haven't as far as I am concerned. And the MAJOR problem being NOT getting answers to my questions. She said she would see what she could do to help me. Hope she wasn't just patronizing me? I told her how its been since Jan. 3rd when I had my surgery and I JUST NOW found out I had this "extra capsular invasion". I said thats NOT right of them to keep all this from me! Had I KNOWN all this from day one I would of had time to research, talk to other hospitals about this...do something. I said my medical team KNEW all this at the FIRST tumor board meeting. I said they DROPPED the ball on me and I am not very happy. Again...this is my LIFE we are talking about...I don't get a chance to have "do-overs". I said they make me feel like since I had a sticky situation that they haven't had to deal with...they just decided BACK THEN to do the minimum for me and be done with it. (She said she was sure that wasn't NOT it.) Yea right...how does she expect me to feel. Because I have a lower lung capacity and the absents of ribs...doesn't mean they should decide that I am TOO MUCH work to deal with and toss me out. I bet if I was THEIR sister, brother, Mother, daughter, son, etc...it would of been done completely DIFFERENT! How I wish I could of WALKED out of here ALONG time ago. I hate HMO's that get you LOCKED down so you can't get out of them. ARGH. My pulmonary doctor is the ONLY one I trust at present. I DO believe he has my best interest at heart unlike them. Had I NOT went to my pulmonary...my rads doctor was going to radiated my incision, axilla are, and collar bone with no problems even when I told him I was having trouble breathing. My pulmonary doctor is NOT part of this GROUP...he is a out of network doctor I got approval to see. So I am glad ONE person is looking out for me....I am just angry that they didn't see this problem along time ago. Your RIGHT Christy....you said the SAME thing my pulmonary doctor said. "That if I can't breath...its not going to help to have my cancer gone". How come my pulmonary doctor and you can see that...but they sure didn't seem to care one way or the other. I do believe your right that I HAVE to move forward. I have decided I can't have the radiation. My pulmonary really believes that will kill me. But I WANT the 2nd opinion for peace of mind...and to SEE if there was something that COULD of been done another way had we known and planned for this when I was first DX? The way this place I am going to has treated me...I want all the opinions from other cancer centers as possible. I am not happy with them. If I can SAVE one OTHER WOMEN from going through anything like I have...then I will feel good about this. This place treats me and others like its a big production line...or MILL. Like we aren't people with feelings that are scared. Where is the compassion. Well...I can't say that about the infusion nurses...these women are by far THE BEST. I love them all. They DO CARE. So everyone here isn't bad. (That goodness for them.) Yes I did have the TCH...and I know that is a good regimen...but now that I KNOW I can't have rads...I can't help but feel I should of had AC to increase my odds since now they dropped the rads I needed that extra percent. (Although the extra risk of heart problems scares me with AC.) With a prognosis as mine...I needed more aggressive tx it seems to me. I am glad I did get the herceptin from day one like you said though....I PRAY that is doing its job with me. My last scans were clean...or so they told me? Sorry I confused you about the anti-hormonal meds. Yes...when I was FIRST DX...I was told I was Er & Pr weakly positive. That was by some test called a "IHC". Something like that? My onc doc at that time said he will just go ahead and treat me like I am positive UNTIL he got my FISH back. I asked him what a FISH was. (When he got it back...it shows I am positive, or so he said?) Thats where I got LOST again too. I don't know how one can be WEAKLY positive...and later be positive? (Is one test better then another?) In fact I have ASKED them HOW positive is my Er & Pr now that they did a FISH on me? I still don't know to this day and I have asked so many times ITS NOT FUNNY! I have a RIGHT to know! I got my records from them and I CAN'T find anything that says the EXACT number of how positive my Er & Pr is? I have some paper saying Her-2 by FISH results amplifed (4.4)....whatever that means? But my oncologist that I changed too...says I AM positive. Where can I FIND the actually number of HOW positive I am on this sheet? I don't see that it says it any where? I wonder if they are LYING to me about this too since they never tell me exactly how positive? They just tell me "your positive". Shouldn't it say like 50% on one, and 70% on another as an example? (Not just positive for both?) So anyway...that is what I have to go on. They say my FISH says I am positive...but yet I haven't a clue HOW positive? I know the first paper they gave me said 15% of tumor is moderately/weakly reactive for estrogen & approximately 5% of tumor is strongly/moderately reactive for Progesterone receptor. Its SURE funny I can find % for Er and Pr on this one sheet...but NOT on any FISH test? The oncologist I switched to down here says I am REAL positive. When I ask exactly how positive all I get is EXCUSES like "I will get that for you later". Or remind me and I will find that. Or I will get my nurse to run you a copy. I swear I am fed up with this! This has been a NIGHTMARE for me. So all I know is I am SUPPOSE to be on either femara or tamoxifen. My onc says Femara...but my 2nd opinion onc at the other cancer center says tamoxifen since I was perimenopausal. The social worker had my onc doc call me this last Friday and she KNEW I was upset. So she said when I come in for herceptin Monday to have my infusion nurse take blood so she can see if I am peri or menopausal? I hope she isn't LYING about that too? Is there REALLY A TEST for this? I am sorry...but at this point I can't believe anything they tell me. My onc was going to JUST put me on femara no questions asked UNTIL I told her what the second opinion onc doc at the larger cancer center recommended. (See what I mean about his place NOT caring about me.) All I know is I am SO HAPPY that this board is here because I just know I would of given up by now. They have just worn me out and took the fight out of me. This board is the only thing that keeps me going. You women and men here and just fantastic. You guys are the only thing that gives me any hope and encourages me to go on and fight. There are so many women here that have been through so MUCH worse and have such good attitudes that it makes me feel so bad even posting this stuff. But I get so upset and I have NO ONE to talk to or express my feelings too. My husband sure doesn't want to hear it. When cancer came into my world...everyone walked out. You women at least are honest and tell me more then my own doctors and give me a direction to go in. You all give me more ideas of what I can do. At least I know I can get some answers here. I swear...without this board I would have no hope at all. Thanks Christy...I really appreciate your kind words. Chelee __________________ DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes. Rt. MRM on 1-3-06 -- No Rads due to compromised lungs. Chemo started 2-7-06 -- TCH - - Finished 6-12-06 Finished yr of wkly herceptin 3-19-07 3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07 9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV. 9-28-09 Loading dose of Herceptin & started Zometa 9-29-09 Power Port Placement 10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head. 11-19-09 RT. Femur surgery - Rod placed 12-7-09 Navelbine added to Herceptin/Zometa. 3-23-10 Ten days of rads to RT femur. Completed. 4-05-10 Quit Navelbine--Herceptin/Zometa alone. 5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy. Results to FISH was unsuccessful--this happens less then 2% of the time. 7-7-10 Recurrence to RT axilla again. Back to UCLA for options.