What is Normal after Cancer?

Cancer Patients won't go back to normal after cancer. But they can find a best "New Normal".

In a Parade article from June 20, 2010 it discusses what is the new normal for some cancer survivors. It goes into some of the problems cancer survivors continue to have after treatment and after they may be named cancer free.

Let me tell you about some of mine. I was diagnosed with breast cancer 3 years ago, had a mastectomy, chemo, and am now on what they call maintenance drugs.

I still have pain where my breast was, I laugh and call it my "Phantom Boob". I can be sitting perfectly still and it feels like someone sticks me with a hot poker. (this is what I imagine a hot poker would feel like). It goes away fairly quickly but the pec muscle stays sore for a while. Sometimes it hurts doing much lifting with my arms.

I had a mediport installed in order to have the chemo easier since I was going to have to have it for the next year and a half. (4 different types that took 2 1/2 years because of complications). Where the surgeon installed the mediport they had to go through the muscle in my arm area. I have had problems with this area ever since. I had to have it taken out because I was constantly in pain where the mediport was attached to the chest muscle above the breast. I still have pains in this spot also even though the mediport was taken out 9 months ago.

I started having a heart racing problem while on chemo. I would walk from my bedroom to my living room and my pulse would start racing around 110 - 120 beats per minute and would not come back down right away. Now I have to take heart medicine and watch for more heart problems.

When I sit too long my legs swell, when I stand too long my legs swell. My lower back aches. I have neropothy in my toes from when the chemo made my toenails turn black and fall off. The feeling never has come all the way back. Sometimes it is weird but the toes seem to burn. I don't know what to make of it.

Before I was diagnosed with breast cancer I was not the most active person, I did not run any marathons, but I worked in the yard, went swimming, and enjoyed outdoor activities. Now, it seems that the heat affects me much more than it ever did. I get dizzy and light headed. I am more sensitive to bugs, poison ivy, and plants that I never had a problem with before.

My maintenance medication, (Femara) which I will be on for 3 more years, makes me moody, gives me the hot flashes and night sweats, (sometimes I feel like I am on FIRE!) and fatigue is constant. My poor husband tries to help but there is nothing he can really do. I just have to wait for it to pass.

I have tried to discuss these items with the doctors but sometimes I feel like they just shrug their shoulders and don't really listen. When I first started chemo my jaw swelled up on both sides and I looked like a chipmunk with nuts in his mouth. This of course happened on a holiday weekend. When I saw the doctor the next week and told her about it all she said was she had never heard of anything like that before. When I lost my toenails and my toes were bleeding, I got the same reply. (I found out later from the web that was a common side effect of the drugs). My jaws still hurt occasionally and my toes will never be the same but I was very glad that my toenails did grow back because sometimes they don't.

Well, There is more to come another day as this is making me depressed. (another of the side effects that cancer survivors quite often have to live with.)

I don't like to complain and I try very hard not to but sometimes I guess it is good therapy just to let it all out.

If you need to vent just give me a reply or response and we will vent together.

You can see the whoe article at www.parade.com/cancer

Inflammatory Breast Cancer Fact Sheet from the National Cancer Institute.

I found this Fact Sheet and it answered many question I had not been able to answer before.

Hope you find it as informative as I did.

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Inflammatory Breast Cancer: Questions and Answers

1. What is inflammatory breast cancer (IBC)?

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 percent of all breast cancer cases in the United States (1). 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 (2).

Key Points

• Inflammatory breast cancer (IBC) is a rare but very aggressive type of breast cancer (see Question 1).
• IBC usually grows rapidly and often spreads to other parts of the body; symptoms include redness, swelling, and warmth in the breast (see Questions 2 and 3).
• Treatment for IBC usually starts with chemotherapy, which is generally followed by surgery, radiation, targeted therapy, and/or hormone therapy (see Question 4).
• People with IBC are encouraged to enroll in clinical trials (research studies with people) that explore new treatments (see Question 5).

2. What are the symptoms of IBC?

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) (3). 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 (1).

3. How is IBC diagnosed?

Diagnosis of IBC is based primarily on the results of a doctor’s clinical examination (1). Biopsy, mammogram, and breast ultrasound are used to confirm the diagnosis. IBC is classified as either stage IIIB or stage IV breast cancer (2). 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. (More information on staging is available in the National Cancer Institute (NCI) fact sheet Staging: Questions and Answers at http://www.cancer.gov/cancertopics/factsheet/Detection/staging on the Internet.) 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).

4. How is IBC treated?

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. The purpose of surgery is to remove the tumor from the body, while the purpose of radiation therapy is to destroy remaining cancer cells. Surgery to remove the breast (or as much of the breast tissue as possible) is called a mastectomy. Lymph node dissection (removal of the lymph nodes in the underarm area for examination under a microscope) is also done during this surgery.

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. More information about Herceptin and the HER–2 protein is available in the NCI fact sheet Herceptin® (Trastuzumab): Questions and Answers, which can be found at http://www.cancer.gov/cancertopics/factsheet/therapy/herceptin on the Internet.

Supportive care is treatment given to improve the quality of life of patients who have a serious or life-threatening disease, such as cancer. It prevents or treats as early as possible the symptoms of the disease, side effects caused by treatment of the disease, and psychological, social, and spiritual problems related to the disease or its treatment. For example, compression garments may be used to treat lymphedema (swelling caused by excess fluid buildup) resulting from radiation therapy or the removal of lymph nodes. Additionally, meeting with a social worker, counselor, or member of the clergy can be helpful to those who want to talk about their feelings or discuss their concerns. A social worker can often suggest resources for help with recovery, emotional support, financial aid, transportation, or home care.

5. Are clinical trials (research studies with people) available? Where can people get more information about clinical trials?

Yes. The NCI is sponsoring clinical trials that are designed to find new treatments and better ways to use current treatments. Before any new treatment can be recommended for general use, doctors conduct clinical trials to find out whether the treatment is safe for patients and effective against the disease. Participation in clinical trials is a treatment option for many patients with IBC, and all patients with IBC are encouraged to consider treatment in a clinical trial.

People interested in taking part in a clinical trial should talk with their doctor. Information about clinical trials is available from the NCI’s Cancer Information Service (CIS) (see below) at 1–800–4–CANCER and in the NCI booklet Taking Part in Cancer Treatment Research Studies, which is available at http://www.cancer.gov/publications on the Internet. This booklet describes how research studies are carried out and explains their possible benefits and risks. Further information about clinical trials is available at http://www.cancer.gov/clinicaltrials on the NCI’s Web site. The Web site offers detailed information about specific ongoing studies by linking to PDQ®, the NCI’s comprehensive cancer information database. The CIS also provides information from PDQ.

6. What is the prognosis for patients with IBC?

Prognosis describes the likely course and outcome of a disease—that is, the chance that a patient will recover or have a recurrence. IBC is more likely to have metastasized (spread to other areas of the body) at the time of diagnosis than non-IBC cases (3). As a result, the 5-year survival rate for patients with IBC is between 25 and 50 percent, which is significantly lower than the survival rate for patients with non-IBC breast cancer. It is important to keep in mind, however, that these statistics are averages based on large numbers of patients. Statistics cannot be used to predict what will happen to a particular patient because each person’s situation is unique. Patients are encouraged to talk to their doctors about their prognosis given their particular situation.

7. Where can a person find more information about breast cancer and its treatment?

To learn more about IBC, other types of breast cancer, and breast health in general, please refer to the following resources:

• NCI’s Breast Cancer Home Page (http://www.cancer.gov/breast/)
• Breast Cancer (PDQ®): Treatment (http://www.cancer.gov/cancertopics/pdq/treatment/breast/patient/)
• Understanding Breast Changes: A Health Guide for All Women (http://www.cancer.gov/cancertopics/understanding-breast-changes)
• What You Need To Know About™ Breast Cancer (http://www.cancer.gov/cancertopics/wyntk/breast)

Selected References

1. Merajver SD, Sabel MS. Inflammatory breast cancer. In: Harris JR, Lippman ME, Morrow M, Osborne CK, editors. Diseases of the Breast. 3rd ed. Philadelphia: Lippincott Williams and Wilkins, 2004.
2. Anderson W, Schairer C, Chen B, Hance K, Levine P. Epidemiology of inflammatory breast cancer (IBC). Breast Disease 2005; 22:9–23.
3. Chittoor SR, Swain SM. Locally advanced breast cancer: Role of medical oncology. In: Bland KI, Copeland EM, editors. The Breast: Comprehensive Management of Benign and Malignant Diseases. Vol. 2. 2nd ed. Philadelphia: W.B. Saunders Company, 1998.

# # #

Related NCI materials and Web pages:
• National Cancer Institute Fact Sheet 2.1, Cancer Information Sources
(http://www.cancer.gov/cancertopics/factsheet/Information/sources)
• National Cancer Institute Fact Sheet 5.32, Staging: Questions and Answers
(http://www.cancer.gov/cancertopics/factsheet/Detection/staging)
• National Cancer Institute Fact Sheet 7.1, Radiation Therapy for Cancer: Questions and Answers (http://www.cancer.gov/cancertopics/factsheet/Therapy/radiation )
• National Cancer Institute Fact Sheet 7.2, Biological Therapies for Cancer: Questions and Answers (http://www.cancer.gov/cancertopics/factsheet/Therapy/biological)
• National Cancer Institute Fact Sheet 7.45, Herceptin® (Trastuzumab): Questions and Answers (http://www.cancer.gov/cancertopics/factsheet/therapy/herceptin)
• Chemotherapy and You: Support for People With Cancer (http://www.cancer.gov/cancertopics/chemotherapy-and-you)
• Taking Part in Cancer Treatment Research Studies
(http://www.cancer.gov/clinicaltrials/Taking-Part-in-Cancer-Treatment-Research-Studies)

For more help, contact:

NCI’s Cancer Information Service
Telephone (toll-free): 1–800–4–CANCER (1–800–422–6237)
TTY (toll-free): 1–800–332–8615
LiveHelp® online chat: https://cissecure.nci.nih.gov/livehelp/welcome.asp
This fact sheet was reviewed on 8/29/06

Heart Medications and Doctor Checkups, Cardiologist.

Well, I made it to the Cardiologist last week and what a bummer. I had an echo cardiogram done which everyone told me was OK.

While I was getting the echo my husband was talking with the doctor and told him my coughing was worse and we really needed to do something about it. The doctor said I should have called and told him about it and he would have changed my medication. He seemed to forget that I did tell him about it my last visit.

When I went in to talk to the Doctor about getting off the Ace Inhibitors because of the cough side effect he did not want me to go completely off the medicine. He changed me to Diovan, 40mg, once a day and gave me samples to try. He said coughing was not one of the side effects of this medicine. If that is so why didn't he change me to it last time when I told him about the coughing problem.

My husband and I could not seem to get a straight answer about why I needed to stay on the ace inhibitors except that it lowers my chance of getting congestive heart disease later on. I am worried about what they are doing to me now.

The doctor said it will take 2-4 weeks for the old medication to get out of my system and to call him back in 4 week and let him know what is happening with the cough.

I was reading the patient information sheet that was with my samples and guess what the second major side effect of Diovan is: Coughing. According to the sheet the occurrence is less than with the medicine I was on so hopefully my coughing will diminish.

Sometimes it is frustrating going to number of different doctors as one will say one thing and then another will say the opposite.

As a cancer patient it is said that you have a family of doctors: your primary care (the one you go to for colds, flu, etc), your surgeon (biopsies, ultrasounds, surgeries, etc), your oncologist (blood work, chemo, etc), your cardiologist ( heart related problems), and all the other specialist they can come up with.

How is it suppose to be a family of doctors if the doctors do not tell each other what the other is doing? How are you suppose to understand and feel secure when you get conflicting advice?

Well, as you can see I am feeling a little frustrated right now and I have to stop or I will really get upset. And that would raise my blood pressure. Which might not be bad since the #1 side effect of the new medication is low blood pressure. OH WELL!

Good health and god bless to you all, and hang in there if you are going thru what I have been.

Cancer Chemo Side Effects, Doctor Bills

Hi Everybody, a new entry to my Cancer Blog has been overdue. Sorry, I have been a little under the weather. My white blood counts came up to above 4,000 on Fri. July 27th which allowed me to stay on schedule with my Chemotherapy treatments. I went in on July 30th for another “Big Mean Red” treatment. It took a little longer to get my treatment this time, around 3 hours. I seem to be having more side effects this time. Some nausea (not a lot due to the 5 medications to prevent it), dizziness, heart palpitations, higher blood pressures, and my hair is coming out. Today, as we speak little pieces of hair are just floating off my head. My hair is about 2-3 inches long so it is easy to see. I did not think it would make much difference but I wish it would hurry and come out so I did not have to watch it come out little by little. I am worried about my white blood count dropping since I am already so tired. I go back on Monday to have my CBC check.

Now, my gripe of the week. Doctor bills, Doctor bills, Doctor bills. I do not understand how the doctors, hospitals, assorted doctors of who know what service, pharmaceutical companies expect a private pay person to come anywhere close to being able to cover some of the ridicules charges that get added to bills. $20.35 for a bottle of Chloresptic throat spray when on the bottle the price is listed as $2.85 with insurance and $1.84 without insurance. I arranged payment for the anesthesiologist for my surgery and now I get a bill for a CRNA Anesthesia Service that I knew nothing about. If he is a Nurse Assistant then why is he charging the same as the Doctor. How do you dispute these charges? You sign anything they want you to, because your life is at stake and in their hands. You are at their mercy or lack of mercy. Sometimes it feels so helpless and frustrating.

I hope you will check back as I update this blog with reports on My treatments, My prognosis, My feelings, Information I have learned (that hopefully can help others as well as myself), and anything else that comes "Popping" into my mind.

Any comments, information, or thoughts are welcomed.

P.S. Because we are some of the millions of Americans who could not get Health Insurance, we are asking anyone who may desire to do so to donate towards our ever increasing medical costs. Go to http://www.fyitoday.com/cancer/donate.html