No rads under any circumstances it seems.

[Chelee]

For the people here that have tried to help me get radiation treatments since I have the problems with missing ribs. I have made calls, talked to anyone that will listen. I still have a 2nd opinion lined up. Its been 2 1/2 months since last chemo...I am late! I am TERRIFIED! They had their big tumor board meeting about me and my pulmonary doctor explained to them how lung function works. Since I only have 37% lung function...the rads doctor said he would hit another 13% of my lungs ONLY doing the axilla area and up by collar bone. Which would bring me down to about 30% use of lungs and he said that is just NOT good enough to take a risk with me. He said he doesn't want to kill me.

I freaked out and called an oncologist I went to a couple months back ago at "another" cancer center. I explained all my problems with rads...and during out talk the onc doc did express it was important for me to have rads especially since when she READ MY PATH slides it showed I had "Extra Capsular Invasion". I asked what that was? She said where the cancer cells spread out in the surrounding tissue where the lymph nodes are. I said "I have NEVER been told this"! She said she saw it on the slides. So it seems even MORE important that I SHOULD have rads to the axilla area at least!

I called my rads onc doc and told him what SHE said about this extra capsular extension in my lymph node area! He says without a pause, "Yes, WE ALL KNEW THAT"! I told him "Well I DIDN'T"! Its been 8 months and NO ONE told me! Now I am REALLY SCARED about recurrance since I CAN'T have rads. My rads doc did the 3D planning, looked at IMRT radiation...and other things. He just says there is no way to do it safely. I said, "should I just lay down and die then". (Then I started crying.) It takes alot for me to cry in front of someone.

Plus I have been WITHOUT any anti-hormonal therapy ALL this time while waiting for rads. All I am on is herceptin. Everyone on this board and one other board with my prognosis was hit very aggressivly with tx. They all got AC...followed by taxotere or taxol. And later herceptin. Plus one friend of mine got all her chemo which included AC and rads at the SAME time. But with me...they do the less with everything. They are the doctors...WHY didn't they FIGURE out at the first tumor board since I am MISSING all these ribs on the mastectomy side that it WOULD be a problem! I had no way of knowing it...but they did. (I told them the other day they dropped the ball with me and I am going to pay for it.) All THOSE DOCTORS & NOT one of them could see THEN there would be a problem. Hard to believe.

I am so stressed and scared. Had I known about this radiation problem...everything would of and SHOULD of been done differently.

Thanks to everyone that tried so hard to help me. It did meant the world to me. You guys care more about me & my out come then my own so called medical team.

Chelee

[tousled1]

Chelee,

I really feel for you and certainly understand why you are so upset. Just try and look at the positives - you had the mastectomy, your breast cancer is hormone dependent which is much better than just being HER2+, and you have had chemotherapy. I know several women who have not had radiation and so far they have not had any mets. I know that this is not too much comfort to you but I know you'll be fine. You are much too strong a person to let this beast beat you! Keep fighting! You're in my thoughts and prayers.

[sarah]

Dear chelee,
I am so sorry to hear how upset you are and totally understand that you are stressed out. I see that you're in southern California, have you contacted UCLA in LA or St John's in Santa Monica??? I know that both hospitals have Breast Cancer Clinics (actually I think every American Hospital does - St John's looks like a boutique hotel!) and maybe they could help you. St. John's certainly would help even if paying was a problem and UCLA should have some method also since it's a teaching hospital. I know UCLA has a paying system where you can meet with doctors from all the areas (radiation, oncology, chemo) and they look at your case together and give their advice. Also UCLA has a 2nd opinion service and a highly respected radiaologist oversees it - Dr. Basett?? and he would discuss your case with you.
It's good that you are being pro-active and definitely get more opinions but I think if the doctors thought you were in a critical situation, they would deal with it sooner. Doctors are in the business of saving lives so try to lessen your stress perhaps by doing yoga breathing or meditation or reading a good book when you aren't trying to get another appt. I do hope you have a friend or family member who is acting as an adovate for you. You sound as if you need a stronger support system. Have you been in touch with any of the local cancer associations that help people???
Also in Southern California - I think at UCLA? is the Susan Komen association - their purpose is to help cancer patients since they get money from the Revlon foundation. Maybe contact them and they could steer you in a good direction. Here in France, I could help you more.
Good luck and don't dispair, help is coming and the wait is often the worst time. Lots of people on this site have gone through tremendous health problems and are strong and positive, so take inspiration from them.
Take a deep breath.
sarah

[Carina]

Chelee,

I am late to this thread and just read about your situtation with rads. I too have extra nodal invasion, which appears to mean that same as extra capsular invasion. Lymph nodes appeared to be matted together and cancer cells had grown beyond the lymph node into the surrounding area. I am sooo sorry to hear about your so far unsuccessful battle to get rads. Will you be starting hormonal treatment soon? I have read about the impact that hormonal treatment can have and I am supposed to start aromatase inhibitors (luckingly AC sent me into menopause and I can use the AI's) when the Taxol is over.

I'm thinking of you and admire your strength. Even while you are fighting for the best care that you can get you have found time to make me feel welcome and give me helpful advice in my own treatment struggles. Thanks again.

Big (but gentle) Hug,

Carina

[Barbara H.]

HI Chelee,
I am sorry to hear that you are not able to have rads and that your oncologists have kept information away from you. Maybe I missed it in earlier posts, but why can't you receive your hormone drugs? Also, remember that you are on Herceptin, and Herceptin alone knocked out my lung and liver mets. It may be attacking some of those invading cancer cells you mentioned. If it ends up that you can't receive rads, then you can insist that you receive Herceptin longer. Remember that there are many stage 4 patients that are surviving a long time and you have many years ahead of you. Because I believe that you have many years to live, I also believe that it is important to protect your lung function.

That being said, your onclogists need to be more up front with you , more on top of things, more understanding, and get back to you in a timely manner.

Good luck!! I'm sure everything will work out in the end. You are very tenacious and a fighter.

Best wishes,
Barbara H.

[Sherryg683]

Chelee, I really think it's time for you to look for some new doctors. Please don't just accept this "abuse" from the ones you have. They really don't seem to have the answer for you...find someone who does. Get with your insurance and see who else is available in your area, or completely out of your area if need be. You need the best care possible, your life comes first..luv ya..sherryg683

[chrisy]

Dear Chelee,
My heart aches for you when I read your posts. I can tell how frustrated and stressed you are, and it is definitely not helpful to feel that the doctors, in whose hands you are placing your life, are not communicating with you and giving you the answers you so desperately need. It sounds like you have sought many opinions, and are still seeking opinions. This is good, since no matter how caring your doctors may be, your outcome is more important to you than to them.
From the outside, it looks to me like you have a very unusual situation what with the missing ribs and lowered lung capacity. This certainly complicates the decision making process. It sounds from your description of your pulmonologist that he believes he is acting in your best interest, as I think the other doctors believe they are, also.
I hope that the 2nd opinion you have scheduled is with a radiation oncologist, as this seems to be the key issue - whether the extracapular invasion can be safely irradiated. It will not do you much good to have the cancer gone if you can't breathe. Perhaps this new doctor will see it differently; perhaps not. If not, you may just have to accept that you will not be able to get rads.
At some point, hopefully SOONER rather than (more) LATER, you will come to a decision about the rads. Regardless of which way this decision goes, I believe you have to move forward; you can't go back. Although you have had frustrations and delays in your treatments, that doesn't mean the treatment you have had was not effective. Remember, you have had some killer (to the cancer, that is!) chemo (TCH) even without AC. The fact that you didn't get AC may have meant you could start with Herceptin right out of the gate and with much less risk of heart toxicity.
So, don't feel like you have not had aggressive treatment, you maybe had different treatment, but TCH is a still a pretty powerful combo. It kicked butt on my liver mets. And in the interim, while you are waiting (and wading) through the decision on rads, you are STILL getting Herceptin. That's no small deal! I'm confused by your comment re not getting anti-hormonals - I thought from your very first post that your disease was ER/PR "weakly negative". Maybe I read that wrong, but if that is the case, I would think that anti-hormonals would be of less benefit to you anyway.

Anyway, dearest Chelee, it doesn't sound to me like you are anywhere near ready to "lay down and die"! You are a major fighter - you have really been assertive in challenging your doctors and seeking additional opinions. You still have another bit of input to get from your 2nd opinion, and others have possibly offered additional suggestions. My hope for you is that you can gather these opinions, then trust in your heart to make the correct decisions for you and not look back.
Nobody knows what the future holds. All we can do is decide from the choices we have before us and trust that grace will lead us to the right ones.

My prayers, as always, are with you.
Chris in Scotts Valley

"Angels come each and every moment to love and protect you"
-"Sista" Monica Parker - "All things are Possible"

[Chelee]

tousled1, Thanks for letting me know about the couple women you know that didn't have rads and haven't had mets. I am just stressed because they all (medical team) stressed how important it is for someone with a prognosis as mine. Then once I got the final decision NOT to do radiation I asked one nurse practioner down there what can happen if I get "local" recurrance where I can't radiate?

She told me sometimes the incision can split open and it can be hard to get it to heal up and it can get pretty nasty and smelly. (Gee...that made me feel great!) But I DID ask her. I have so many questions NOW that I know I can't have radiation. I bet a play heck getting any answers.

But THANKS so much for your support. Like I said before...I get more support and reason to go on from the help of this board then I do from my medical team. They really don't care if I live or die and they KNOW I am STUCK with them thanks to the way this HMO is.

They are finally wearing me down...I hope they are happy. I am sure glad I fought my surgeon on having a lumpectomy now. He really pushed me to have a lumpectomy. But I had made up my mind that I just wanted it GONE. I have been married 26 yrs and the tumor was 3.5 cm...so I thought there wouldn't be much left of my breast anyway. Plus I did NOT want to risk having MORE surgeries if he was unable to get clean margins.
Now that I know I not only had the 5 positive nodes...I find out I have that "extra capsular invasion" which I did NOT know about till last Friday. (That makes me mad that no one told me. (They have kept me in the dark since day one.)

I would be twice as stressed had I not had a mastectomy...so your right tousled1, I am GLAD I did that. Thanks again for your post. The other women you know that did NOT have radiation...were they stage III with positive nodes? I was just curious if they were at high risk like me.

Thanks for your prayers...I need them.

Chelee

[Chelee]

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

[Chelee]

Sarah, My insurance company said I COULD go to UCLA for a 2nd opinion. So now that you gave me that information I think that might be my best bet. Especially since you said this Dr. Basset is well known. I want someone that knows what they are talking about. I know I would certainly look FORWARD to meeting with a radiation onc doc and even a regular oncologist to go over whats been done to treat me since day one. Normally I would not care since we can't change what is. But I need a little peace of mind at this point. This place I have been going to has me to where I have lost ALL faith in them. They just do NOT care one way or another about me. All they care about is that they don't cross the line to much so that I or family can come after them.

Its ridicolous how they have kept me so stressed out and in the dark about my prognosis and care. Even my husband can't believe how they sit and talk and say NOTHING. He is loud and aggressive and has tried everything he knows to get the answers I need from them when we are in their office. Even that hasn't helped.

I would just like to come home one day from that place and LET it go for a while. Instead I am on the internet trying to figure out what everything is that was mentioned on my PET/CT scan since my onc doc won't tell me anything. It will say I have an enlarged node...but she will just say "Its nothing...its unchanged from last time..dont' worry about it". I still want to KNOW WHY its enlarged. Why can't she take the time to explain things like that to me? Or I have soft fluid build up in the tissue underneath the axilla area. Or increased uptake in two different areas. So I have to come home and GOOGLE everything. It eats up all my time. Why do they want to worry me and stress me out?! Just answer me for I can go home and relax for a while...is that asking too much.

One thing you said Sarah that I really HAVE to look into ASAP. I DO need to call some place and find someone to help me. I DO need a support system of some kind? I have NO one. My Mother will listen to me but she can't do much...she would if she could...but due to her age and health...its impossible. My husband USE to take me to my chemo appts and leave the minute he could. He doesn't want to hear any of this. He says it stresses him out. (Gee...how do you think it makes me feel.) So he is no support.

I would do almost anything to have someone to talk to about all this. I feel SO ALONE its not funny. I have never felt so alone. I think I will call Reach to Recovery, or the cancer society...some one. That is a good idea. Thanks Sarah.

This her2 board is the ONLY support I have. Thank God for this board. Most the women here have been through so much and are always willing to lend a ear and try to help me out. I would be SO LOST without this board...that is no joke.

The amount of knowledge alone of this board is just unreal. The women on here give me real hope where my cancer center gives me none. I thank God each night for this board and everyone that is here to help, and needs help.

Thanks for telling me about UCLA Sarah. I so appreciate it.

Chelee

[Chelee]

Sherry, I would love to leave this place. I can't. I am totally LOCKED into this group. When you pick the insurance you want for the year...you are STUCK in that group. You have to pick a doctor that works out of the hospital you plan to use. And then you can ONLY use them. If you go OUT of this group...its called "going out of network" which means we would be responsible for every penny. Thats how these doctors get away with this...they KNOW we CAN'T walk. We can only change to another oncologist in THAT same group which I have done once already.

I like your choice of words though...this is "abuse". I am going to make lots of calls this week...something HAS to change. I can't take this any longer. The stress will kill me long before the cancer does at this rate.

Thanks for caring Sherry.

Chelee

[tousled1]

Chelee,

The FISH is a more precise test when it comes to diagnosing ER/PR and HER2. AC is damaging to your heart and since you immediately started Herceptin I think you'll be ok. As for the rads, it seems to me from your posts that the pulmunary doctor has your best interest at heart. When I had my mastectomy I was hoping I wouldn't have to undergo rads but since they removed so many nodes and 14 were positive the oncologist ordered rads. The women I mentioned were stage III HER2+ and received Herceptin but no rads and are doing fine.

Whenever my oncologist orders a test for me I always ask for a copy of the results. She always give me a copy and will go over the report with me. I also write out a list of questions before my visit so that I don't forget anything. You know how it is - you leave the docs office and that's when you think of things you should have asked. I just had a PET/CT scan Friday and will get the results Thursday when I see her.

I have great confidence and trust in my team of doctors and I think that is very important. I'm so sorry that you are going through all these problems with your doctors. Having breast cancer is stressful enough! You are a fighter and will overcome these obstacles. My thoughts and prayers are with you.

[sarah]

Dear Chelee,
Hopefull;y by now you have some answers and have found a support group near you. Where in Southern Calif. are you? Besides contacting the Susan Komen group at UCLA - they are supported by the Revlon family trust. UCLA has a social worker to help with these things. Cedars Sinai has some groups as does City of Hope, St. John's in Santa Monica, basically I think even your HMO should have something or be able to suggest places also the American Cancer Society and People With Cancer I'm sure have groups all over. There's a group called SHARE that's based in Santa Monica but has groups all over. You really do need a support group or person. This site is wonderful but you also need someone you can call up and who understands what it's like and what's going on.
Good luck with finding a group/person that makes you feel more secure and with your heath. It's great for all of us that this fantastic site exists.
sarah

[Margerie]

I am so sorry Chelee. I understand the complexity of your situation, but the delay in the decision is pretty inexcusable. I had my rads consult about 2 months into chemo and that was with me delaying it a bit- couldn't handle everything at once. They really should of, IMO, had the plan ready before you ended chemo.


If it makes you feel any better, rads only prevents a local recurrence. My surgeon was very surprised that I elected to do rads. I had 5 nodes too. He said he has done thousands of mastectomies and has only seen a local reccurence twice.
I hope things slow down for you! It will take some time to heal your spirit, but you can do it.

Best wishes to you on your journey,

Margerie

[mts]

"At Loma Linda we use protons for patients who have localized cancers in many anatomic sites. We also use protons for some noncancerous disorders. We evaluate other conditions and anatomic sites continually, and are studying ways to combine protons with other forms of treatment..."

Chellee-

I have been reading about proton beam radiation for some time. From what I gather, it is so perfectly beamed onto the cancer area, that rarely is other tissue damaged. They used proton beam for children, for eye cancers (where they go right through the eye and not cause blindness) and of course, prostate cancer.
Anyway, I don't know where you are in XCalif, but the Proton Beam center at Loma Linda is very unique and if I am correct only 1 of about 5 in the nation...?

Anyway, its worth taking a look.
Maria (MTS)

[mts]

http://www.mdanderson.org/care_cente...B74E8222871F34

This website is from MD Anderson in Texas. Everything you want to know about proton beam radiation. I still think it could be used in some breast cancers. In fact I will post a thread to see if anyone here has had it for breast or node radiation.
Maria