inflammatory breast cancer

I was diagnosed in November 2002 with Stage IIIB inflammatory breast cancer.  After 3 sesisons of chemotherapy the tumour disappeared and my lymph nodes went back to normal.  I have been NED since.  I celebrated my 5 year anniversary last November.  For some time I have been having feelings of depression.  I think it's getting worse.  I feel that I have been very lucky with what has happened to me and I can't understand why I should be feeling sad.  Is it normal of have some depression five years after diagnosis?  I am taking Tamoxifen at the moment and I am 59 years old.

[Dennis MD]

Hi.
Do not be depressed.  You are very fortunate that you have no evidence of disease for 5 years.  That's more than enough to be thankful for.  
Do continue with your regular surveillance check-ups.  You may want to talk to your oncologist or psychiatrist to resolve issues that are bothering you.
Stay positive.
Good luck.

[jennifer64]

Hey,

I'm confused about your nodal status.  You said they went back to normal after chemo, were you ever diagnosed with postive nodes?

[Rosie1138]

Yes, I was diagnosed with positive nodes.  That was one of the ways they knew that I had ibc and that it was serious.

[candy808]

hi, i was wondering what other symptoms were you having prior to being diag. with Inflammatory BC. I think that I have it as well and I can't find a Doctor to take me seriously to save my life. I have the thickening of my breast, red hot spots, looks like oranges on the bottom and my sister has had BC at the age of 26. I would appreciate any  help

[Dennis MD]

Hi.
I think you have a valid reason to be seen by a doctor.  You do have changes in the appearance of your breast.  On top of that, you have a family history of breast cancer.
Aside from the changes you mentioned, can you feel any lump/s in the involved breast?  Perhaps you can elaborate more.  Breast cancer screening is proven to be effective in identifying breast cancer at an early stage so that prompt treatment can be instituted.
I would suggest that you go to another doctor for further evaluation.
Good luck.

[betty48]

Run do not walk to a real doctor.
Betty

[MrFritzy]

Go to any doctor that can get you in and demand an MRI of the troublesome breast.  It is not common to have breast infections if you are not nursing a baby or post-menopausal.  Go to the IBC.org website, print the symptoms and take them to the doctor with you so that he/she knows your concerns.  I'll be thinking of you.  Please let us know what you find out.

Take care

[MrFritzy]

Hi Rosie,

I too have had serious problems with depression and anxiety after cancer treatment.  IBC stage IIIb - Her-2 positive.  The best thing I think I have ever done was to call the hospital social workers.  I hope you are close to a hospital.  They have cancer treatment and recovery social workers.  These feelings are completely normal.  You went through hell to survive and now you're having to deal with everything you and your family went through.  I met a wonderful woman, Anne, that helped me understand all the things I was feeling and why I wasn't "happier to be alive".  

I'm troubled by Dennis MD's response.  You are grateful to be alive, you are living.  That's proof enough.  Telling someone to be positive, be grateful or not to be depressed is far from helpful.  In fact, it puts pressure on you to not share your feelings which are very real.  Don't listen to people that say things like that to you.  

I'm starting to feel much better now.  Please give the social workers a call.  I did not have to pay to talk with them and I'm quite certain Anne saved my life.  

I'll be thinking of you!  Take care,

[Dennis MD]

Hi.
I thank you for your comments for both Candy and Rosie.  I’m sure they were helpful.
As an oncologist, I do advise my patients to have a positive outlook in life, to be grateful for all the good things that had happened, and to take the negative ones as a challenge.  That helps them a lot.  I also ask my patients to tell me the issues that are bothering them, issues that may affect their day to day living.  
Cancer management is multidisciplinary.  It involves not only the oncologist (surgical, medical, or radiation oncologists), but also the psychiatrist, social service, etc.  All work together for the good of the patient.  

[nealk]

Hi and congratulations on being a 5 year ibc survivor!  My daughter is a 10 year ibc (she's 46) survivor and it always puts a smile on my face when I read of someone with this insidious disease being NED (no evidence of disease).  

For those who are reading this please take the time to educate yourself and know the symptoms of Inflammatory Breast Cancer (IBC)  It could save someone's life!  Rosie, I'm so happy for you and yes, it's NORMAL to feel guilty for being a survivor when sadly there are so many other women (and men) had lost their battle to IBC.  

I'm on my husband's board name right now But my name is Mare.  Please visit the Inflammatory Breast Cancer Foundation's website at www.ERASEIBC.com
We also have an advocacy list a www.ibcsupport.org where we discuss ways of getting word out about IBC.  If you'd like to join us we'd welcome you with open arms.  Wishing you continued good health.  

[survivor07]

I believe as cancer survivors we are ENTITLED to be depressed and pissed off at times.. no matter how long ago you were diagnosed. It irritates me that People/Drs are always saying 'be positive, be thankful".  I believe it is healthy, and very necessary to address and express your negative feelings, fear, and anger... whether it makes people around you uncomfortable or not!

Good luck, my thoughts are with you.

[atee]

You said in March, to Rosie, "Aside from the changes you mentioned, can you feel any lump/s in the involved breast?  Perhaps you can elaborate more.  Breast cancer screening is proven to be effective in identifying breast cancer at an early stage so that prompt treatment can be instituted.
I would suggest that you go to another doctor for further evaluation.
Good luck. "
Why, dear Doctor, did you not tell her about Inflammatory Breast Cancer?  That there is NO early detection for IBC because by the time it is physically SEEN it is already stage IIIB.  That it usually does not present with a lump.  That too many 'physicians' misdiagnose IBC as mastitis. That a simply skin biopsy to RULE OUT IBC can and should be done for women that present with irregular breast conditions.  It should be routine, and cannot understand why IT IS NOT!
Please, don't leave women in the dark, tell them about Inflammatory Breast Cancer.
You, as an oncologist, could save someone's life on this forum board.

[katarina777]

I do not agree with your criticism, atee. Hower,  I did and do agree with MrFritzie's.

Dr. dennis is pointing out to candy, that it is good that she is observing her own breast, and that he thinks all women should do that.

Obviously, candy has already educated herself about IBC and it is not Dr. Dennis's job to go into all the details about IBC.

In my case, I always knew that I would NOT EVER get cancer in my life, and then when I started having symptoms, they were so obvious, they could be seen from a mile away. i could hardly be in denial about them. I saw a doctor and told him I had bc. he agreed, and so did every other doctor after that and even the surgeon. he told me I had IBC when he first saw me and long before the biopsy results came back.