Monday, 4 February 2008

A Lump Is Not Necessary To Have Breast Cancer

I have been asking myself why I didn't insist with my doctor that I had breast cancer.  The first time I saw her for this complaint I remember my first words when she checked me were "I don't have breast cancer do I?"  hee hee, kinda, DO I?   "Oh no" she says "you don't have a lump."  Okay right, she's right, I don't have a lump.  Nor do I have a history of breast cancer or for that matter any kind of cancer in my family.  We are a family exempt of cancer.  I will definitely have a heart attack because I am built like a ball and we have a history of heart disease in our family.  

I went back and forth to this doctor as my breast got worse and worse and each time, I'm like "I don't have breast cancer do I?" and each time I got the same response.  I was sent for a mammogram and it came back with no change from the mammogram I had two years previously.  By the end of the six months (which is a death sentence in IBC) I was finally sent to a breast surgeon who confirmed that "YES, in fact I do have breast cancer."  no hee hee, no kinda, just a you DO.

I understand that my doctor had never seen IBC like this before (she did have a patient that had IBC but it presented differently than mine).  The funny thing is I still like this doctor, I know that she crucifies herself for her mistake, I know that she is a medical doctor and not a magical doctor.  I know, I know, I know.  I just can't help thinking if only she had been more informed about this or at least given me something to see if it was an infection or sent me to a breast surgeon earlier like I asked her too.

I have a huge part to play in this because after all it is MY life, not hers.  I have to be my own advocate, and for Christ's sake I was 49 years old.  I wish I was one of those people who knowing something was seriously wrong would have insisted, because I knew something was seriously wrong.   I never wanted to be the squeaky wheel, now I wish I was.  I want this to be a warning to all of you.  Trust yourself.  Know that you know what you know.

Over and over in my head I played out the myths of breast cancer.  Lump. Mother or aunt had breast cancer. Had late periods. Never had children. Never breastfed.  Mammogram was clean.  I fit in to none of those myths.  That is why today I want to give some information to other women about IBC.  Please look at the facts and more than that please have faith in yourself.


Inflammatory breast cancer is a rare but very aggressive type of breast cancer in which the cancer cells block the lymph vessels in the skin of the breast. This type of breast cancer is called “inflammatory” because the breast often looks swollen and red, or “inflamed.” IBC accounts for 1 to 5% of all breast cancers. It tends to be diagnosed in younger women compared to non-IBC breast cancer. It occurs more frequently and at a younger age in African Americans than in Whites. Like other types of breast cancer, IBC can occur in men, but usually at an older age than in women. Some studies have shown an association between family history of breast cancer and IBC, but more studies are needed to draw firm conclusions.

Symptoms of IBC may include redness, swelling, and warmth in the breast, often without a distinct lump in the breast. The redness and warmth are caused by cancer cells blocking the lymph vessels in the skin. The skin of the breast may also appear pink, reddish purple, or bruised. The skin may also have ridges or appear pitted, like the skin of an orange (called peau d’orange), which is caused by a buildup of fluid and edema (swelling) in the breast. Other symptoms include heaviness, burning, aching, increase in breast size, tenderness, or a nipple that is inverted (facing inward). These symptoms usually develop quickly—over a period of weeks or months. Swollen lymph nodes may also be present under the arm, above the collarbone, or in both places. However, it is important to note that these symptoms may also be signs of other conditions such as infection, injury, or other types of cancer.

Diagnosis of IBC is based primarily on the results of a doctor’s clinical examination. Biopsy, mammogram, and breast ultrasound are used to confirm the diagnosis. IBC is classified as either stage IIIB or stage IV breast cancer. Stage IIIB breast cancers are locally advanced; stage IV breast cancer is cancer that has spread to other organs.  IBC tends to grow rapidly, and the physical appearance of the breast of patients with IBC is different from that of patients with other stage III breast cancers. IBC is an especially aggressive, locally advanced breast cancer.Cancer staging describes the extent or severity of an individual’s cancer.  Knowing a cancer’s stage helps the doctor develop a treatment plan and estimate prognosis (the likely outcome or course of the disease; the chance of recovery or recurrence).

Treatment consisting of chemotherapy, targeted therapy, surgery, radiation therapy, and hormonal therapy is used to treat IBC. Patients may also receive supportive care to help manage the side effects of the cancer and its treatment. Chemotherapy (anticancer drugs) is generally the first treatment for patients with IBC, and is called neoadjuvant therapy. Chemotherapy is systemic treatment, which means that it affects cells throughout the body. The purpose of chemotherapy is to control or kill cancer cells, including those that may have spread to other parts of the body.After chemotherapy, patients with IBC may undergo surgery and radiation therapy to the chest wall. Both radiation and surgery are local treatments that affect only cells in the tumor and the immediately surrounding area.

After initial systemic and local treatment, patients with IBC may receive additional systemic treatments to reduce the risk of recurrence (cancer coming back). Such treatments may include additional chemotherapy, hormonal therapy (treatment that interferes with the effects of the female hormone estrogen, which can promote the growth of breast cancer cells), targeted therapy (such as trastuzumab, also known as Herceptin®), or all three. Trastuzumab is administered to patients whose tumors overexpress the HER–2 tumor protein.  --  Posted in Inflamatory Breast Cancer.

I know that this was probably long and boring, but if only I had bored myself with it earlier.  That is the end of it though, I can't live in what ifs, or shouldas, I have to live with right now.

Ciao dear ones.  (I love the word ciao)


Karin said...

Thank you for this information Renee. I've been going back to your blogging beginnings, and reading your journey - this is really good information, and I will remember it for myself, and all the women I know and love.
gratefully, with love, Karin

Deborah said...

Oh, Love. Have you thought of placing a link to this post, to the beginning...on your side bar?

Ribbon said...

Renee... thank you just doesn't seem enough.

It's not only what you share, but how you do it that makes me believe that you're awesome!

best wishes
Ribbon xx

Aleksa said...

Thank you dear,Im following everything you write and making notes so I can reed it again from behinde the blog.Love ya! Sandra.

PS Im not that handy with the Photoshop but I did made some paintings-drawings(digital)I will send them to you by email,OK.Have a great day darling Renee.

soulbrush said...

i have heard of so many 'mistakes' that doctors have made, even have a few in my family...but my teeth are gnashing and i am in pain for you here, mental pain....oh my god!!!!

Artistic Accents by Darla said...

Renee, my mother died from side effects of a prescription drug at the age of 44. The same 'trust' thing, basically happened. She kept asking about all the bruising she was having and thought something must be wrong. Her Dr. said, 'it's just a side effect'. If we had done some checking on our own, we would have found out it was a side effect serious enough to cause death and discontinued use immediately. She still had a bond with her Dr. though, she really felt he tried his best.

She wouldn't have been too pleased, but my Dad did file a lawsuit after her death. He had too many people pushing him and telling him it didn't have to happen the way it did. I guess he was hurt, lonely, lost and eventually angry.

This post is SO important and I hope many, many people see it! Your message is so awesome! THANK YOU!

Sue said...

An incredibly powerful and informative post! Renee, thank you so much for bringing this to the attention of the newer followers of your blog. Woman of all ages should be aware and remember this information about IBC.


ruthie said...

thank you renee for this post & for urging folks to read it, my grandmother died from breast cancer & yet i still shy away from the idea. and your comments about having faith in yourself. x x x

mermaid said...

You have to be one of the most understanding patients in the world. We are medical doctors, not magical doctors, and yes, a patient needs to be there own advocate. Thank you for the education, and I am so glad you survived to share your amazing story. May you be well.

yoborobo said...

Thank you so much for this post, Renee. I will have my daughter read this, too. It's so important for all of us to be aware of these symptoms. I am sending you a big hug, for your courage (as always) and for your honesty with all of us. You rock. xoxoxoxox Pam

Great-Granny Grandma said...

What a tragic mistake. And you, Renee, are truly an awesome woman to have extended such grace to the doctor who made it. I keep praying for a miracle for you. You have been such an encouragement to so many who follow your blog and your journey. I pray that the Lord would encourage and lift you up too.

rochambeau said...

Thank you Renee for posting this again. It is such important information.
May God continue to assist and bless you in perfect healing.


With love,

LaWatha said...

Not that long, Renee- and definitely not boring. Excellent information. And a reminder to be a pest to your doctor or at least get a second opinion if you feel in your heart of hearts that something is not quite right.

Reminder to self: I'm overdue for my mammogram. Call the doctor. Tomorrow!

Gabrielle said...

Really good information and I will file it for future use I am sure. This needs to become mainstream information, until I had my doctor appt. I had never even heard of it.

Cat (darklingwoods) said...

I'm a new visitor but I want to thank you for this information. I've never heard of this at all.
Wishing you all the best


dragonflydreamer said...

Thank you for this information. Like some of the others, I had never heard of IBD. I, too, feel angry with your doctor. You see, my son has been ill since he was in his teens and was misdiagnosed with some rare benign illness. He went off to college and eventually became so ill we had to go to Orlando and bring him back home to Virginia. I had been the squeaky wheel. Recently I got him in to see a doctor at the University of Virginia Hospital. It's not good and each thing discovered should have been discovered by the doctors I begged and cried out to for help for my son. His new doctor says that it is negligent and lazy not to investigate a chronic problem that a patient keeps presenting with symptoms. God Bless you. I will keep you in my prayers.

Robin said...

dear, dear Renee - thank you for your post today about the tea party rabbit. here at your site, i was very moved by your post about your IBC. my mother went through a similar situation; not IBC, but with a doctor who said, 'let's watch that lump for 6 months.' this was back in the early 80s. it did not go well. things were different then, although as you know, there are still sub-par doctors around. i wish you lots of love and healing. there are so many breakthroughs these days with breast cancer drugs. i'm sure you are staying on top of all the latest info. warmest hugs to you - xoxox, robin

Nevine said...

Renee, it's very thoughtful of you to post this for everyone. I think we're all so busy running around with life to think about the most important thing in life - our health. Thank you for taking the time and thinking of everyone in the process. It's so like you, though, so I'm not surprised. Have a wonderful day, Renee.


Mim said...

My dear dear friend. It was because of you that I recently insisted on more investigation when I found a small rash on my boob. "no big deal" said everyone and it wasn't until I had exhausted every avenue that I began to believe it. And truth is, I'm fine. But I wasn't going to be brushed off...and played a large part in my decision. So thank you! much love mim

linda cardina said...

thanks for sharing, dear heart. i just copied, pasted and sent to all my loved ones. xoxoxoxlinda

Treaya said...

Thank you so much for writing this. I never knew this existed.

drollgirl said...

thank you for writing this, and i am so sorry for what you have been through, and for what you are going through.

my mom had breast cancer at 40. i am 39 and i worry about it. a lot. i had no idea about this form of breast cancer, and at least i am now armed with a bit more knowledge.

i am hoping that your treatment is going well (if you are still undergoing treatment). hang in there. and thank you again for posting this.

Doris Sturm said...

Thank you very much for posting this. I have heard about this type of breast cancer before, but had forgotten about it and was glad to re-read the information from a person who had first hand experience with it. I have also learned to go with my first "gut instincts" because they are usually right. Unfortunatley my experience with the medical profession here (where I live now) has ranged from less than satisfactory to down-right scary.

If I ever get anything really dangerous, I'll have to move back to California or at leat go out of this state to seek medical help.

I'm so sorry you had to learn the hard way. I will be praying for you.

Kind Regards,

Draffin Bears said...

Dear Renee,

thank you so much for posting this information again.
Also many thanks for your courage and honesty in sharing your story with us.
My love and thoughts are always with you, my friend.