Desperate

blessings1020 · March 2004

I am a 52 yo woman who was told on 4/7/03 that the lump I felt was breast cancer. The surgeon gave me the choice of lumpectomy or mastectomy and because of the size of the tumor, I chose the mastectomy (surgery on 4/25/03).

Decided to have tissue expander implanted for reconstruction (not a good candidate for flap, etc. because of health issues). Expander implanted on 4/25/03.

Developed a massive infection at mastectomy site and put on heavy antibiotics. Plastic surgeon believes this left great amounts of scar tissue.

Started chemo and had 6 rounds as "adjuvant" therapy. Told by my oncologist that because of size and agressiveness of my tumor that it was "more than likely the cancer will show up somewhere else"...imagine having that hang over your head.

Problem is...am having *severe* pain at mastectomy site and under arm (developed 3 months ago). I have had a cat scan, bone scan (showed a hot spot where pain is), films of chest and ribs and a pet scan.

Told by oncologist that he cannot find any more cancer and when I ask why I am having such severe pain (am on morphine 3x/day), he yells at me and tells me I should be grateful it is not cancer (which I am not so sure it is not).

I am already disabled with rheumatoid arthritis and chronic lung disease and don't know if I can handle this much longer. My quality of life has greatly diminished and now, the person I thought I could really depend on, has started seeing me as a "pain in the neck" or a "hypochondriac".

My family doctor (been seeing for 12+ years) has informed me he will call the oncologist and told me there is definitely something there because of the bone scan.

I apologize for the length of this message, but can anyone give me some hope?

God Bless all...

tlmac · March 2004

Hi blessings, I can understand how desperate you're feeling. My first suggestion would be to seek a second opinion from another oncologist. Having been through a breast cancer disgnosis, I know that one of the things that got me through it all was a wonderful relationship with my medical team. Never once did any member of that team fail to address all my concerns or followup on any health related consequence of surgery or chemo. You deserve much more than a doctor who reprimands you and dismisses your complaints. The second thing I'd tell you is that a hot spot is not always an indication of cancer. Other bone disease can also cause these hot spots, including common conditions like arthritis. You have listed a number of factors that might be contributing to your current condition. We assume all oncologists approach treatment the same but this is far from the case. Look for an oncologist who treats you with respect and is committed to resolving your health issues. You deserve better than you're getting.

CindyPR · March 2004

Hey my new found friend,

You have to get out of the cancer mode. I have gone through, being in a country, that does not want America here. I went through threw the same thing you did, my Mom went through the Mass. I was likely, only in both breasts, being 47, and in another country, had the chemo and the redro. Lost all hair, it comes back again.

Why our you giving up on your life, it is so short, where do you live. I am here for you.

Cindy in Puerto Rico

billandpatty · March 2004

I'm sorry you feel desperate and you've had to go through so much and on top of it be treated badly by health care professionals. As "tlmac" suggested, get a second or even a third opinion. You should at least be listened to with caring and compassion -- and no one should be yelling at you! It sounds like you have an ally in your personal physician (mine was a good one too). Also, try to do something that helps you. One thing that I found helped with pain is a stress reduction class that you can keep doing on your own when the class ends. It's really meditation. I found it extremely helpful to ease pain, and that's not what I took the class for. Sometimes if you can change just one thing, other things get better, including relationships. Hopefully you'll get some answers soon. In the meantime, write us whenever you need a hug -- there's always someone around.

DeeNY711 · March 2004

Since it is almost a year since your surgery, schedule an appointment with the breast surgeon and ask the surgeon to review all of the information available in regard to the hot spot. The surgeon has a different outlook and hopefully, a more appropriate temperament.

You know something is not right or you would not have this discomfort. Keep seeking the answer to your question. I know I was extremely reluctant to do anything that would alienate any of the physicians caring for me, but six years ago I took the time to answer a patient satisfaction survery honestly after an operation, and I explained the terror of being at the mercy of a sullen anesthesiologist so well, she was let go. If I had not expressed the residual distress over this, it would have stayed with me and adversely influence choices I had to make in the future. There is a complaint procedure. Consider it as an option. You can have your medical records transfered to another oncologist if that would be preferable.

Lastly, I do not tell you this to cause more distress, but a colleague had her mastectomy in the hospital where we both went to nursing school. She was unhappy with the tram flap results on one side and elected to have revision of that side. On her pre-op chest xray, a circular ring was observed. It was the metal ring attached to a surgical sponge accidentally left behind. That occurred over ten years ago and new techniques reduce the need to use surgical sponges of that type now, but persist in getting your hot spot checked out until someone figures out what it is.
Love,
Denise

hummingbyrd · March 2004

Got to agree with tlmac, get a second opinion. With that said, here's some hope, I've had a hot spot on bone scan in my neck since 2/02 and it hasn't shown up on anything else. I think the bigger issue with you though is the pain. Hot spot can be there from inflammation. There are alternative treatments out there for pain relief and one such treatment is EMT, electromagnetic therapy. It's like an MRI without the radiation and seems to be working with certain pain issues, particularly nerve pain, wound and bone healing. Do a search on the internet, still in trial phase and not yet FDA approved, but from what I've read there are no contraindications except pregnancy and pacemakers.
God bless, I wish you well.
hummingbyrd
www.urcctc.com

blessings1020 · March 2004

I want to thank all of you who replied to my plea for help. I am new on this board and it is so comforting to know there are other women who understand.

Had a visit with my oncologist yesterday (and spent the rest of the day in bed). I confronted him with his attitude toward me and flat out asked if he thought I was a hypochondriac. He kind of laughed and asked me why I asked about the hypochondriac issue (I told him because of the way he was treating me) and he half-heartedly apologized to me for upsetting me.

He also asked me if I was willing to go to the pain clinic for some relief of my pain and I told him I would do anything to get rid of this pain.

Something interesting...he gave me a copy of a letter he sent to my surgeon (copies to my plastic surgeon and family doctor) wherein it states something *was* found on the PET scan, however, he felt it was "non specific". So here I have a bone scan with a hot spot and a "non specific" finding on a PET scan. Oh yes, he stated in his letter that I am NOT in the considerable amount of pain I was in the last time I saw him (this is a blatant lie).

I have known my family doctor for almost 13 years, and I am going to see if I can get him to find me another oncologist (must tell you a short story here...the first oncologist I went to was a Korean doctor...very nice lady (so I thought) but I could not understand a word she said). She asked to see my mastectomy and stated "Oh, that's ugly!" . She talked to me further and asked to see my scar once again and this time stated "OH, that's REALLY ugly!" I decided then and there she was NOT the doctor for me...here's the kicker...she's in the same cancer group as my present oncologist.)

I have fought hard for my life (I had a respiratory arrest in 1988) and am not about to give up now, but this is very discouraging.

Bless you all and have a glorious weekend.

radioav8r · March 2004

I have soreness under my arm, too and was told it was scar tissue developing. Believe me, I ran back to oncologist too fearing the worst! But, there could be an easy explaination such as this one. Best of luck to you in your recovery!

nancyeob · March 2004

Blessings,
As children we were taught to respect and even fear, a little, people of authority. Our Parents, Police, Teachers and Doctors. I believe there are still professionals that are under the impression that they are not to be questioned and if we do it's us not them that are in the wrong. My first Oncologist was "assigned" to me and even though our personalities didn't click I was sick and he was helping me get better. Nothing wrong with aged doctors but he graduated medical school the year I was born, 1950. I was lucky enough to have an Oncologist move to my town and if for nothing else it was closer. From the first visit I knew I found someone I was comfortable with. We must all get away from the old way of thinking that once you go to a doctor of any sort you are their patient for life. Reporting a doctor for unprofessional behavior is a mute cause but you can try and use this forum to let people in your area know of your experiences with him.
I have very poor ROM and have pain because of scar tissue and I am back in PT for a second time. Went to a pain clinic and was issued a TENS unit which did little to nothing for me. With your medical history I would be damn sure I had full confidence in your doctors and to Hell with what this one "doctor" has pigeon holed you as. Keep fighting for your rights as a person/patient. It's so easy for someone to say your not in pain and that it's all in your head. Do what you feel is right for you. We are all here for you and I hope that helps a little
Nancy

blessings1020 · March 2004

nancyeob said:
Blessings,
As children we were taught to respect and even fear, a little, people of authority. Our Parents, Police, Teachers and Doctors. I believe there are still professionals that are under the impression that they are not to be questioned and if we do it's us not them that are in the wrong. My first Oncologist was "assigned" to me and even though our personalities didn't click I was sick and he was helping me get better. Nothing wrong with aged doctors but he graduated medical school the year I was born, 1950. I was lucky enough to have an Oncologist move to my town and if for nothing else it was closer. From the first visit I knew I found someone I was comfortable with. We must all get away from the old way of thinking that once you go to a doctor of any sort you are their patient for life. Reporting a doctor for unprofessional behavior is a mute cause but you can try and use this forum to let people in your area know of your experiences with him.
I have very poor ROM and have pain because of scar tissue and I am back in PT for a second time. Went to a pain clinic and was issued a TENS unit which did little to nothing for me. With your medical history I would be damn sure I had full confidence in your doctors and to Hell with what this one "doctor" has pigeon holed you as. Keep fighting for your rights as a person/patient. It's so easy for someone to say your not in pain and that it's all in your head. Do what you feel is right for you. We are all here for you and I hope that helps a little
Nancy

I thank you so much for your positive reply.

Would you believe that this oncologist even ordered a mammogram for me of the left and right breasts and I don't even have a left breast!

In a letter he wrote to my other doctors, he stated that I virtually stated I had no problems with chemo...did he forget the three days I was hospitalized or the time I had to be put into a bed and given IV fluids because I was dehydrated and fainting, etc.? Does this guy even remember me or at least read my file?

I cannot expect every single person I see to remember my life's history, but I sure do want the one doctor in the world who is going to "save" me from the dreaded "C" word to at least look in my file once in a while and treat me with compassion and RESPECT.

I will see what happens with the pain clinic. All I know is that this pain is debilitating and I have no problem finding another oncologist who seems to feel this is all "in my head". He sure is making enough money from my case to buy a new car. I think since my surgery, treatment, etc. has started, this has cost in excess of $250,000.

You hang in there as well, Nancy, and I hope your pain subsides and you feel wonderful.

Diane

blessings1020 · March 2004

nancyeob said:
Blessings,
As children we were taught to respect and even fear, a little, people of authority. Our Parents, Police, Teachers and Doctors. I believe there are still professionals that are under the impression that they are not to be questioned and if we do it's us not them that are in the wrong. My first Oncologist was "assigned" to me and even though our personalities didn't click I was sick and he was helping me get better. Nothing wrong with aged doctors but he graduated medical school the year I was born, 1950. I was lucky enough to have an Oncologist move to my town and if for nothing else it was closer. From the first visit I knew I found someone I was comfortable with. We must all get away from the old way of thinking that once you go to a doctor of any sort you are their patient for life. Reporting a doctor for unprofessional behavior is a mute cause but you can try and use this forum to let people in your area know of your experiences with him.
I have very poor ROM and have pain because of scar tissue and I am back in PT for a second time. Went to a pain clinic and was issued a TENS unit which did little to nothing for me. With your medical history I would be damn sure I had full confidence in your doctors and to Hell with what this one "doctor" has pigeon holed you as. Keep fighting for your rights as a person/patient. It's so easy for someone to say your not in pain and that it's all in your head. Do what you feel is right for you. We are all here for you and I hope that helps a little
Nancy

AMEN!!!, Nancy.

Watch me go!!!

Diane

AMZ · March 2004

i DON'T KNOW IF i can be any help or not. I had my last of six chemo treatments in May of last year. They tried two expanders on me neither worked. The last one gave me a terrible infecsion too. Like you some times I wonder if any one really cares. I will be 60 at the end of this year. I have High blood presure and arthris. But I HAVE MADE UP MY MIND THE GOOD LORD HAS GOT ME THIS FAR. I will just have to hang in there and let Him lead me the rest of the way. I don't mean to pearch but that is how I feel.. Tke care and God Bless. AMZ

deletta · April 2004

Hello, I was recently diagnosed with b. cancer. I am so sorry for you situation. You need to seek
a new oncologist if at all possible. Do not settle for that type of treatment. You are valuable and
deserve the best care possible. If you can not advocate get someone to do so. I have had the
same treatment and seeked another doctor and believe me it can help your physical/mental
state so much to have kind physicians. Take care and god bless you, Deletta in MN

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