Misdiagnosed and needing support

beansnbubba

I found a fairly large growth in my left breast and went to my Dr. in January. He sent me for a mammogram and ultrasound. The mammographer was so kind, and said "there's an exception to every rule, but don't worry too much, breast cancer doesn't usually grow this fast, nor is it painful like yours is. The labs came back and biopsy was necessary. I set up an appt. with a surgeon I was familiar with and trusted, only to find out 3 days before my visit that he doesn't take my insurance. I had now lost 2 1/2 weeks. I went back to my family Dr. to see if he could get me in to another surgeon quickly, and the mass had doubled in size in one month. He gave me the same advice the mammographer gave, but did get me an appt. for the next day. On my first surgical visit, and after another ultrasound, I asked the surgeon what his thoughts were, and he (very crudely) turned to look at me and said "I think you have cancer". He scheduled me for a biopsy in his office 2 or 3 days later. He apparently severed a vein, which bled profusely for about 20 minutes. He bound me up with ace bandages and sent me home, driving myself 20 minutes. A few minutes after arriving home, while talking to my husband, we noticed blood on the floor...I was bleeding again! The surgeon said to bring me back to his office, and fortunately a nurse friend who lives close by came over. By the time they got me to the front porch, I was incoherent. She could not find a radial pulse at all, only a faint carotid, and I did not respond to pain, so they called an ambulance. The surgeon was angry that I had been taken to the hospital, even tho my b/p was 61/47 when they loaded me in the ambulance. On my next appt. he told my husband and I that the large mass was "nothing to worry about", but that there was a dime sized mass that was cancer. He recommended a fairly new procedure, mammosite, where he would remove the lump and surrounding tissue (you may have already heard of this) and place a small ballon in the cavity. If the nodes came back clear, I would only have to have 5 days of radiation in the balloon. My husband asked about the large lump because it was so painful. The surgeon again said "don't worry about that, but I will take some of it if I can without leaving too large a space for the balloon". He also said they they no longer recommend total mastectomy unless the patient just prefers it, that my chances of survival or recurrence were the same either way. Last Friday I had a lumpectomy. I had also seen an oncologist about the mammosite procedure, and he asked me point blank why I didn't think the large mass was cancer. I just repeated what my surgeon had told me, and he shook his head and said O.K. Before surgery I had to have a needle loc procedure. The Dr. doing that proc. told me he couldn't understand why it was being done, and called my surgeon to ask him. He put the wire in, but he told me it made no sense, since the radiologist report only mentions one mass, the large one, which was malignant. Now I was terrified. I asked to see my surgeon one more time before surgery. When I told him of the other Drs. concerns, he just said "it doesn't matter, we're going to remove all of this". My husband asked about the balloon, and he showed us with his fingers how big it was (twice the size he originally said) and said it wouldn't be a problem. I came out of surgery with no mammosite balloon, and the top half of my breast gone. We were never given the option of opting for a total mast. if he found it necessary during surgery. Tues I went to drain removal, which didn't happen, and he said well, we're going to have to remove the rest of the breast, I did not have clear margins and nodes were positive. I am a strong woman, and my husband and I had already talked about total, and decided we could handle that. My heartache now comes from not only the breast cancer, but having to go back for another surgery. Hubby's work is always out of town (construction), and altho I'm very blessed with kind helpful friends, I'm still alone most of the time. It's breaking my husband's heart that he can't be here, but he has been out of work for a total of 6 months in the last 10, and we need the income. Now I'm scheduled with an oncologist for next week, and the surgeon (who I no longer trust), is being re-activated into the army and I will have to begin with a new one. He has made no reference to the "mix-up, and I know he never will. I believe in my heart that the surgeon was so intent on mammosite surgery that he put on blinders about the large tumor. If the second Dr. at the hospital hadn't question things, and if I hadn't told him, I believe I would have come out of surgery with a mammosite balloon, and the cancerous tumor still in my breast. I am now so angry, heartbroken, and blind-sided I don't know where to turn. Friends and family are trying to help me emotionally, but I find that I wake up with a positive attitude, and after 10 phone calls, all wanting to know how I am and what's happening, I find myself wanting to tell them to "leave me the He** alone! That is SO not me, but it's like having way too much sensory overload. Any help and advice you can give me would be so appreciated. I think I'm coming apart at the seams.

Dot53

Wow..
You have been through a lot my pink sister... I am so sorry that you had to go through all that... It reminds me once again that we all have to be our own advocate.. if we think that something else is going on or that the doc is wrong always get a second opinion.. we should probably do that regardless.. On a positive note, you have come to the right place for support and friendship...

I will keep you in my prayers..

Best wishes,
Dot

katznc

So very sorry for all of your pain
First of all you have every right to be totally stressed out, angry hurt and confused and betrayed. You did nothing wrong so do not feel guilty about being totally stressed.

Second, Friends are so well meaning but not always on the mark. Perhaps you can appoint someone who does not stress you out and that you totally trust to run interference for you for all the rest of your friends and reletives until you are able to cope with everyone.

Third, since it will be so hard to trust any doctor at this point get a friend to help you research surgeons that are available in your area. You need a surgeon that specializes in breast cancer if that is possible and be treated at a cancer center if that is at all possible. I know that you are on a time line and constrained by insurance but your fears are justified totally and anything you can do to bring them down to a manageable level will help you heal and be well.

Fourth, one thing at a time. Right now that is surgery. Too much input would shut anyone down. You need to take care of yourself first.

Everyone will be cheering for you....

carkris

katznc said:

So very sorry for all of your pain
First of all you have every right to be totally stressed out, angry hurt and confused and betrayed. You did nothing wrong so do not feel guilty about being totally stressed.

Second, Friends are so well meaning but not always on the mark. Perhaps you can appoint someone who does not stress you out and that you totally trust to run interference for you for all the rest of your friends and reletives until you are able to cope with everyone.

Third, since it will be so hard to trust any doctor at this point get a friend to help you research surgeons that are available in your area. You need a surgeon that specializes in breast cancer if that is possible and be treated at a cancer center if that is at all possible. I know that you are on a time line and constrained by insurance but your fears are justified totally and anything you can do to bring them down to a manageable level will help you heal and be well.

Fourth, one thing at a time. Right now that is surgery. Too much input would shut anyone down. You need to take care of yourself first.

Everyone will be cheering for you....

you have had a tough time.
you have had a tough time. perhaps your neighbor who is a nurse could recomend someone better . you need to have doctors around you who you trust. usually a cancer center is best. the doctor sounds like a nut and I would run away from him as far as possible. How were you to know, but now you do so get someone else. designate one friend to get info from you and people can call them. they also have web sites like care pages, that you can write an update and people can respond in kind. less stress on you. once you have a plan and your diagnosis you will feel less stressed as you will know what you are dealing with and what you have to do. you are in that scary limbo world One day at a time. keep in touch. People here are so kind and helpful.

MyTurnNow

Breast cancer is definately
Breast cancer is definately not a walk in the park but it is NOT the nightmare you have experienced so far. After reading your story, I am glad that the surgeon you have been dealing with is now out of the picture. I hope your next one is someone you are comfortable with and can have faith in. If not, seek out someone else until you feel comfortable. As far as having to repeat your story over and over to concerned family and friends, why not start a blog on caringbridge.org or one of those websites. You can enter your information daily or as needed and just refer concerned parties there. Just a thought. I wish you well as you continue to fight this beast. Please keep us posted on your treatments and also know that we're here 24/7 and will hold your hand and provide encouragement and support along your journey. Take care.

shortscake

wow
wow all the things that we have to deal with please don't give up, sometimes it seems that our body is working against us but its not a lot of times its telling us when something is wrong, the one thing i know for sure its had to find a good doctor and when you do you will know. you might want to give the acs to see if they have someone in your area.i hate when they say its the size cancer comes in all sizes and shapes so it hard to tell with out the bi cope. i wish you the best and always remember girl power

Kat11

shortscake said:

wow
wow all the things that we have to deal with please don't give up, sometimes it seems that our body is working against us but its not a lot of times its telling us when something is wrong, the one thing i know for sure its had to find a good doctor and when you do you will know. you might want to give the acs to see if they have someone in your area.i hate when they say its the size cancer comes in all sizes and shapes so it hard to tell with out the bi cope. i wish you the best and always remember girl power

Wow is all I can come up
Wow is all I can come up with. I would not go back to any doctor I did not trust. I was told that I was going to have a lumpectomy, but if she my surgeon felt she could not get a clean margine then she would remove the whole breast right then and there. I also was to have the radiation balloon implant, but it did not work out for me because I had nodes involved and if you have nodes involved you can not have this. You did not mention, did they check you for node involvement. I would if it was me look into the cancer centers in your area. Most important, you have to trust your medical team. It's hard enough getting though the journey, but without trust it will horrible.

Barb A

Sorry for what you are going through
I am so sorry to hear what you have been through. No one should have to go through any of it, much less all that. As others have said, you really have to be your own advocate. Get tough with these doctors!

I have one suggestion to handle the phone calls; Perhaps you could set up your own web page and post daily or weekly blogs or updates. You could ask people to go there instead of calling you. You could use the reasoning that you have so many wonderful people who care about you and want to know how you're doing, but you aren't getting the rest you need because of so many calls. Tell them it would be easier for you to get emails or if people checked out your web page. Then have a friend or family member respond to the emails for you or post your updates. I think most people would understand that. You could always call the people you want to speak with.

I know a second surgery isn't what you wanted. But hang in there and do what you have to to get better. If it helps, write a scathing letter to the surgeons superiors.

Remember, we're all here for you. Post here any time as it does help to let it all out. You are in my thoughts and prayers.

Barb

Skeezie

Barb A said:

Sorry for what you are going through
I am so sorry to hear what you have been through. No one should have to go through any of it, much less all that. As others have said, you really have to be your own advocate. Get tough with these doctors!

I have one suggestion to handle the phone calls; Perhaps you could set up your own web page and post daily or weekly blogs or updates. You could ask people to go there instead of calling you. You could use the reasoning that you have so many wonderful people who care about you and want to know how you're doing, but you aren't getting the rest you need because of so many calls. Tell them it would be easier for you to get emails or if people checked out your web page. Then have a friend or family member respond to the emails for you or post your updates. I think most people would understand that. You could always call the people you want to speak with.

I know a second surgery isn't what you wanted. But hang in there and do what you have to to get better. If it helps, write a scathing letter to the surgeons superiors.

Remember, we're all here for you. Post here any time as it does help to let it all out. You are in my thoughts and prayers.

Barb

A very good suggestion to have one trusted
friend or relative handle all of your phone calls. You are too sick and stressed to keep repeating all of this and then having to listen to probably a lot of well-meaning bad advise.

If it were me, I would also double check my onc for just accepting what the surgeon said about the big lump. My onc (who I saw before my single, simple mastecomy which was what I chose) called my surgeon and said she wanted the other breast checked. I had minor calcifications in the other breast whcih both my surgeon and mammorgram radioligist passed as being ok from past reports. I had an open biopsy the week before the mastecomy and there was a tumor (can't think of the name righrt now) that is ALWAYS begin and inside was the microcalcification, all benign. I always insist on an open surgical biopsy because that removes the lump completely and if it's malignant and has clean margins then I'm half way home to the next step. It worries me that your Onc. didn't persue that huge, painful lump. Everyone dropped the ball and you have paid the high price. I would file a complaint against the surgeon with your state. It will be there for everyone to see if they check on him. In fact it's a good idea for all of us to check up on our doctors that way...I have a freind who is a Reg. Nurse and she always checks a new doc before seeing him/her. It's posted on-line and you can check from your computer at home.

I hope the rest of your treatment progresses well, but please don't rule out a second opinion from another onc. Please keep us posted on your progress. You have been thru so much and need some relief, both physical and emotional!

Super Hugs, Judy :-)

mariam_11_09

That is just awful, to have

That is just awful, to have to be put through that! It sounds like, regardless you need a new surgeon. Was your surgeon a Breast Surgeon? At our clinic we have surgeons who specifically do breast cancer surgeries but then I live on the San Francisco Peninsula where there is a high rate of breast cancer.

Really take care of yourself and if you can maybe not take calls for a day or two, or have your husband or a friend call your family and give them the update. It is not easy to deal with cancer alone and then with a huge complication like this can be overwhelming. If you need time out/alone then really allow yourself that.

Take care and God bless.

fauxma

mariam_11_09 said:

That is just awful, to have

That is just awful, to have to be put through that! It sounds like, regardless you need a new surgeon. Was your surgeon a Breast Surgeon? At our clinic we have surgeons who specifically do breast cancer surgeries but then I live on the San Francisco Peninsula where there is a high rate of breast cancer.

Really take care of yourself and if you can maybe not take calls for a day or two, or have your husband or a friend call your family and give them the update. It is not easy to deal with cancer alone and then with a huge complication like this can be overwhelming. If you need time out/alone then really allow yourself that.

Take care and God bless.

No one should have to go
No one should have to go through what you did. It is a blessing that this surgeon is gone. Everyone has given you such good advice so I will just say that I will keep you in my prayers. Cancer is never easy but it does not have to be this hard.
Stef

JudyAS

Wow, what you need to find
Wow, what you need to find is if there might be a Breast Cancer Center near you. I was sent to the St. Louis Cancer and Breast Institute and they are all women cancer surgeons and I would recommend them to anyone. They are wonderful and they do not look at any lump as nothing. Everything is very important to them. When I went my surgeon sat down my my husband, son and I and drew pictures of the breast and how these lumps appear and answer any and every question we had. I wish and pray you would have a cancer center near you like that. My medical doctor is the one that sent me there. I will pray that you have something just like that close to you. You need the positive side of all this. You will make it, and yes there is alot of stress to a mastectomy, but with all of us cheering you on and praying for you will help. Good luck and keep us posted.

Hugs Judy

Youcandothis

JudyAS said:

Wow, what you need to find
Wow, what you need to find is if there might be a Breast Cancer Center near you. I was sent to the St. Louis Cancer and Breast Institute and they are all women cancer surgeons and I would recommend them to anyone. They are wonderful and they do not look at any lump as nothing. Everything is very important to them. When I went my surgeon sat down my my husband, son and I and drew pictures of the breast and how these lumps appear and answer any and every question we had. I wish and pray you would have a cancer center near you like that. My medical doctor is the one that sent me there. I will pray that you have something just like that close to you. You need the positive side of all this. You will make it, and yes there is alot of stress to a mastectomy, but with all of us cheering you on and praying for you will help. Good luck and keep us posted.

Hugs Judy

Breathless
What a terrible experience, as though just the diagnosis weren't enough... You've gotten some good advice already, I'll just add that we have to advocate for ourselves. My surgeon prepped me for mammosite, but path done during surgery showed node involvement so she couldn't do it. A major cancer center or hospital is definitely worth insisting on. The ability of the surgeon to have path reports on nodes and margins during surgery could save you a second surgery, as it did me.
Praying your way forward becomes smoother.

e_hope

WOW
Sorry to hear you are going through so much. its not fair. This is a hard enough situation with out dealing with bull ****. I would be greatful that the surgeon will no longer be in your care. You deserve a good one who will have your best interest at heart. That is such an old way of thinking.. to just cut everything out and leave a woman disfigured. You should've been given all your options and meet with plastics to discuss reconstruction if you desired. My surgeon, had told me my choices where either mastectomy or chemo first to try to shrink tumor to try for lumpectomy.. otherwise because of the size of my tumor and size of my breast he would've disfigured me. I opt. for the mastectomy.

I hope you have a better experience with your new surgeon. and that things start to move in the right direction for you. You don't need the added stress, on top of this already stressful time...

ms_independent

yikes
Yikes--what a major screw-up! I am so sorry you have had to go through all of this mess. Breast cancer is enough without the rest of the incompetence. I am glad your surgeon has to leave---you don't need that kind of help. I agree with the other suggestions---talk to the nurse neighbor and find out if you have a local cancer center. Also, if you can--talk about what you are going through, to anybody (not just people you are close too). You will be amazed at what you can learn from others---such as good Dr.s, cancer centers etc.

Concerning being overwhelmed by caring people: there is a free web site dedicated to helping people going through life-altering medical events. You give friends and family a link to the site. You have your own site where you tell your story (just like you did here) and then you post updates as they happen. Friends and family can keep up with whats going on without exhausting you and your husband. Your husband can post for you if you don't feel like it sometimes. Friends and family can also leave notes for you. Those notes helped me so very much---I can't even describe. It was also very good for me to write what was going on with me, I chose to include the physical as well as the psychological. But, you can put whatever you are comfortable with. The site is super user friendly--you don't have to have great computer skills to do it. The site is www.caringbridge.org . I didn't really want to use the site but did at my husbands request. I am SOOOO glad I did. Check out the site, it might be good for both of you.

I wish you smooth sailing as you move forward. There are plenty of warriors here to support you on your journey. We know a lot of what you are going through and want to help you.

Hugs, El

Sunrae

ms_independent said:

yikes
Yikes--what a major screw-up! I am so sorry you have had to go through all of this mess. Breast cancer is enough without the rest of the incompetence. I am glad your surgeon has to leave---you don't need that kind of help. I agree with the other suggestions---talk to the nurse neighbor and find out if you have a local cancer center. Also, if you can--talk about what you are going through, to anybody (not just people you are close too). You will be amazed at what you can learn from others---such as good Dr.s, cancer centers etc.

Concerning being overwhelmed by caring people: there is a free web site dedicated to helping people going through life-altering medical events. You give friends and family a link to the site. You have your own site where you tell your story (just like you did here) and then you post updates as they happen. Friends and family can keep up with whats going on without exhausting you and your husband. Your husband can post for you if you don't feel like it sometimes. Friends and family can also leave notes for you. Those notes helped me so very much---I can't even describe. It was also very good for me to write what was going on with me, I chose to include the physical as well as the psychological. But, you can put whatever you are comfortable with. The site is super user friendly--you don't have to have great computer skills to do it. The site is www.caringbridge.org . I didn't really want to use the site but did at my husbands request. I am SOOOO glad I did. Check out the site, it might be good for both of you.

I wish you smooth sailing as you move forward. There are plenty of warriors here to support you on your journey. We know a lot of what you are going through and want to help you.

Hugs, El

I'm so sorry that all this
I'm so sorry that all this happened to you and has really messed up your life. Makes me want to wring that Dr's neck. I feel bad for the Army, never know how many innocent people he might harm while in the service. Hope you find a good surgeon that knows what they're doing. I can understand why you're angry and upset and you have a right to those feelings. I got second opinions from a second surgeon about my bc and found out so many things that were different from what the first one told me. My first one was recommended by my family dr. I starting asking around and the same group of drs. kept coming up, and that's who I went to. So my masectomy is scheduled for next week. It had been postponed because it was discovered I have blocked arteries which the cardiologist cleared one enough so I can have the surgery. Now I had to go to a new cardiologist because my old one can't practice at the hospital where I'm having surgery. I just went to the new cardiologist this week and really like him. He thinks my heart problems can be treated with meds instead of a bypass (which the old cardiologist suggested), and then I found out that the first cardiologist had did a balloon angioplasty but only told me I was having a rotoblation procedure. Even in my follow-up visit no one told me I had a balloon angioplasty. This happened 4 weeks ago and I just found out. I'm real upset with that dr. But I feel like I have a good team of surgeons and drs now and I hope you find the right surgeon, someone you trust. Keep posting and let us know how you're doing.