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CancerLynx - we prowl the net
January 10, 2005

What Stage is Your Breast Cancer ?
Have You Seen Your Doctor Lately?

Susan Andrews

I have stage IV breast cancer and I'm a member of Club-Mets-BC an internet metastatic breast cancer support group. We talk about everything imaginable. These folks are from all over the US and outside the US.

A lot of them started out at early staged breast cancer and then it returned. Some started out with stage IV, as I am one of those too. Sometimes when it returned, it was easily treated, sometimes it had already caused some major damage. It could have something to do with catching the recurrence early as possible.

Where can your cancer recur? How will you know?
What are some of the symptoms? The following are some examples of symptoms and sites where the cancer could return. These examples I'm listing is what led some of the ladies from my support group back to the doctor. Some just went back and found the cancer returned without symptoms.
B... had initial stage I and was told of a 1% chance of it recurring. A few years later it returned to her bones.
K... had a bloody discharge from her nipple and a benign biopsy three years prior her diagnosis of stage IV. She was told of a 10% increased likelihood of developing breast cancer. When the bloody discharge came back she went for mammogram and ultra sound. Nothing was found. She and her radiologist fought the insurance company to get a MRI. The MRI showed breast cancer and Liver metastasis. She was also having pain in her shoulder and hip, which she let go for a few months. Metastasis were found in both places also.
J... says severe pain in her femur led to the bones diagnosis. She has it in her skull, sternum and spine too.
J... wrote that she had a stage I diagnosis in 1994. In 1999 gripping pain in her right side and vision problems, shortness of breath. She has extensive bone metastasis, tumors on both eyes and lung metastasis with pleural effusion, areas in the spleen and liver.
J... was initially diagnosed at IIIa. When one of her breast became deformed she went to the doctor. She later was diagnosed at stage IV with Invasive Lobular Carcinoma metastasis.
K... was IIIa at diagnosis. She later developed bloating of the abdomen, pain in her lower right side and vomiting. Now she's stage IV with liver metastasis. A..., God love her, had stage I initially. She found her lump while in bed. As she puts it, "I was reading, balancing a book on my chest, and idly ran my hand across my cleavage, only to bump into a lump on the right side of the valley". She's stage IV with metastasis to both lobes of the lung, pleura and diaphragm.
G... was stage IIa initially. Later the lung metastasis were found on a pre-surgery chest X-ray.
L... was stage II in 1999. In 2004 she's stage IV now having found metastasis to the lungs via a routine checkup and x-ray. She was having no complaints or symptoms.
J... had stage I in 1984. Stage IV in 2001. Her symptoms were shortness of breath and she thought it was her heart. They found it in her pleura of the lung.
A... started out at IIb. with symptoms of redness on the breast. Then onto stage IV with metastasis to many bones and distance lymph nodes. Her symptom was a swollen arm. P..., bless her heart, was stage 0 in 2002. Recurrence in 2004, she noticed an ongoing back ache with no relief. It was bone metastasis that caused a compression fracture. She has metastasis in almost all her bones. There's one bump growing under her skull and getting into the brain's space. She's in danger of a pinched spinal cord which could lead to paralysis.
S... says she had no symptoms and a breast tumor was found on a mammogram. Bone scan followed by a PET scan showed bone metastasis. Beth says she was told they might be catching her cancer early. But the bone scan following her mastectomy showed bone metastasis. She discovered a lump. The ob/gyn didn't feel it and they dismissed for several months. Her husband could feel it and within five months she got a mammogram, ultrasound and needle biopsy. She has increasing pain in her upper back from bone metastasis.
J... felt a thickening in her breast in 2003. Dr. called it stage one. During the lumpectomy they called it stage III. Bone marrow biopsy found metastasis there. She was then restaged to IV.
P... was staged I in 1996. Her cancer was found during a routine physical. She decided to go back to doctor after finding out her brother was diagnosed with esophageal cancer in 2001. They found metastasis in her lung and later spread on to the liver.
In my case, when I go to the doctor I bring up every little thing I'm feeling. I bring it up with these ladies first to get their knowledgeable input. I've been what is called in remission or NED (no evidence of disease) since May 2004. I've been having an ongoing tingling sensation in top of my head. Mostly left side and then onto the right sometimes. It's even moved down the side of my face. I told my Oncologist who didn't mess around and ordered x-rays (for the ongoing pain in my right side) and a bone scan of my whole body. I just got the news that all were negative. The ladies on the group have told me to get a brain MRI too because the bone scan didn't catch theirs when they had the same tingling. So I will be calling the oncologist soon to speak with him about this.

If you look on the internet the symptoms are extremely vague compared to what you've just read. They say, bone pain, shortness of breath, lack of appetite, weight loss and neurological pain or weakness. I have read a lot about checking the scar area of a mastectomy for skin metastasis. If you notice anything odd at all around the scar area,

CALL for an appointment.
There is no cure for breast cancer. Oncologists will tell you that the approach is treating it like a chronic disease. I'm sure the insurance companies love this idea. So with that said, you've got a fight on your hands. If you want something followed up and the doctor seems to be too dismissive, Change Doctors.

I think some doctors are like contractors. The insurance companies will work with the ones for the lowest bid, being the doctors who with the lowest amount of tests and treatments ordered for their patients. I really hope this isn't true, but I'm beginning to think it could very well be. I used to be on a certain treatment for my bone metastasis. Now I'm on another kind. I noticed that 99% of the ladies on my support group are on this treatment too. Why is that, did this drug company put in the lower bid? If you had a better response to a certain treatment and then they change it on you, ask why. If you notice that you start doing worse on the new treatment ask about going back to the original. If the doctor says he doesn't think it's a good idea, Ask Why?

Make these doctors spend some time with you. Most of them think they can review your chart five seconds before they come into the room to greet you. Then jot down some notes, write a prescription and forget about you until the next appointment. Boy what they get paid for a five minute chit chat.

I do want to add that I'm not down on all doctors and most are really great. I have a good oncologist now who'll get on the phone and order tests and listen to any concerns and have them followed up ASAP. My oncologist back in Virginia would see his patients in the chemo room and drop in to ask about this or that, without a chart in his hand and he knew your name.

So in the meanwhile, is your doctor thinking about you, if you haven't seen them in a while, then probably not . They are not going to call you up and ask if you're having any symptoms. So what are you waiting for? If it's time, Call your doctor.

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