Tired of doctoring...... the treatment goes on.

I have been avoiding writing this for some rather odd reasons. Friday was a long day. Meeting with the radiation oncologist was a little bit more upsetting that I would have expected. Again I had to hear about all the possible side effects including my risk for lymphedema. I remember working  as a geriatric care manger and meeting someone with a very swollen arm from her cancer experience. She was always uncomfortable and wore a sleeve to help manage the swelling. The sleeve was hot and annoying to her in South Florida. There is no understanding as to whether or not "babying" the arm or using the arm in any kind of strenuous exercise or whether doing routine exercise and stretching can prevent this from happening,  In other words, there is no clear prevention.   It just happens to some people. They took measurements at 6 sections of my hands and arms and will do so from time to time to monitor how my lymph system is working.. I was told not to do any kind of lifting with my left arm though. I will be meeting with a Lymphedema therapist after my 37 treatments of radiation. My doctor is Dr. John Wilson, a Penn graduate. But he lives in Atlantic City because he likes to surf. He did greet me warmly and identified me as the "one going on a cruise". 


Dr Wilson looked at every single film I brought with me. He was designing the course and angle of radiation, being careful to avoid my heart. It is my left breast that has cancer. I could get some scaring or burning of the skin and will be using cream daily to help with that.  The entire process of treating the whole breast is quite involved as I had 2 cancer lymph nodes floating around in my breast tissue and surgery was not able to give me "clean" margins.  I go back this Friday to get 3 little tattoos to mark important areas for the radiation to intersect on my breast........not really what I wanted to do 2 days before leaving for the cruise. I will start radiation the day after I get back, Monday March 27, 2016. I will go daily at 8 am, Monday through Friday for almost 7 weeks. I shouldn't be in the building more than 20 minutes each time I go.

Later in the day, I went to see Dr. Gor. I learned that she will also be the doctor giving me my estrogen suppressing medication. Drawing my blood to test was very challenging. The third person finally got me from the hand after 2 others failed, each trying twice.  My blood count indicated that I am slowly recovering from all the chemotherapy but it is still in my system. I have some small mouth sores and diarrhea continues to happen on and off.  I go back at the end of April.

To be quite frank, I am tired of all this doctoring for this little tiny piece of cancer that was about an half inch big. My appointment for genetic testing is April 8, 2016. And of courser there still is the Lymphedema therapist to met with too. It seems never ending.  I am in no mood for any reoccurrence.  I do know, that if sometimes comes back genetic, I am NOT having a mastectomy after all this treatment. I will just do a wait and see as I know I will be closely monitored.   Dr. Gor was concerned that radiation could damage the skin for reconstruction - I tried to reassure her that if I ever need a mastectomy, I will not have reconstruction. She did not listen and told me I will feel differently when it happens to me. ... or at least I do not know how I will feel.  And I think I do as I am already done with this crap. I am no longer really sexually active. I just do not need to have breast replacements if they need to go. Besides, I like undershirts.... way more comfortable than bras. 

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Lymphedema is most commonly caused by the removal of or damage to your lymph nodes as a part of cancer treatment. It results from a blockage in your lymphatic system, which is part of your immune system. The blockage prevents lymph fluid from draining well, and the fluid buildup leads to swelling.

There's no cure for lymphedema. But it can be managed with early diagnosis and diligent care of your affected limb,  Lymphedema is a potential side effect of breast cancer surgery and radiation therapy that can appear in some people during the months or even years after treatment ends.

Lymph is a thin, clear fluid that circulates throughout the body to remove wastes, bacteria, and other substances from tissues. Edema is the buildup of excess fluid. So lymphedema occurs when too much lymph collects in any area of the body. If lymphedema develops in people who’ve been treated for breast cancer, it usually occurs in the arm and hand, but sometimes it affects the breast, underarm, chest, trunk, and/or back.

Why does lymphedema happen? As part of their surgery, many people with breast cancer have at least two or three lymph nodes removed from under the arm (sentinel lymph node biopsy), and sometimes many more nodes (axillary lymph node dissection). If the cancer has spread, it has most likely moved into to those underarm lymph nodes first because they drain lymph from the breast. Many people also need radiation therapy to the chest area and/or underarm. Surgery and radiation can cut off or damage some of the nodes and vessels through which lymph moves. Over time, the flow of lymph can overwhelm the remaining pathways, resulting in a backup of fluid into the body’s tissues.

If you already have lymphedema but don’t remember hearing much about it during breast cancer treatment, you’re not alone, says Dr. Marisa Weiss, chief medical officer of Breastcancer.org. “I can say from experience that the time right after diagnosis, when you are considering options and planning treatment, is a blur. When you are feeling so anxious and overwhelmed, it is hard to listen, understand, and decide. So even if lymphedema gets mentioned during this time, you may not remember it. Or it may not come up because the focus is really on getting you well. So if lymphedema does develop later on, it can feel like yet another insult to the body, one that many women weren’t fully prepared for. The good news is that women can learn how to manage it and lead normal lives.”

Although there’s no way to know for sure whether you’ll develop lymphedema after breast cancer, you can help yourself by learning more about it. Know your risk factors, take steps to reduce your risk, and be aware of early symptoms. Left untreated, lymphedema can worsen and cause severe swelling and permanent changes to the tissues under the skin, such as thickening and scarring.

Adding to the frustration some people feel is the conflicting advice about how to prevent and manage lymphedema — perhaps you’ve encountered some of it! There’s still much more research to be done before we fully understand this condition. Also, many doctors don’t have a great deal of experience with lymphedema. Realize that you may need to take charge and find your way to an experienced lymphedema therapist.

Eighteen Steps to Prevention of Lymphedema

1. Absolutely do not ignore any slight increase of swelling in the arm, hand, fingers or chest wall (consult with your doctor immediately).

2. Never allow an injection or a blood drawing in the affected arm(s).

3. Have blood pressure checked in the unaffected arm.

4. Keep the edemic arm, or “at-risk” arm spotlessly clean. Use lotion (Eucerin, Nivea) after bathing. When drying it, be gentle, but thorough. Make sure it is dry in any creases and between the fingers.

5. Avoid vigorous, repetitive movements against resistance with the affected arm (scrubbing, pushing, pulling).

6. Avoid heavy lifting with the affected arm. Never carry heavy handbags or bags with over-the-shoulder straps.

7. Do not wear tight jewelry or elastic bands around affected fingers or arm(s).

8. Avoid extreme temperature changes when bathing, washing dishes, or sunbathing (no 1sauna or hot tub). Keep the arm protected from the sun.

9. Avoid any type of trauma (bruising, cuts, sunburn or other burns, sports injuries, insect bites, cat scratches).

10. Wear gloves while doing housework, gardening or any type of work that could result in even a minor injury.

11. When manicuring your nails, avoid cutting your cuticles (inform you manicurist).

12. Exercise is important, but consult with your therapist. Do not overtire an arm at risk; if it starts to ache, lie down and elevate it. Recommended exercises: walking, swimming, light aerobics, bike riding, and specially designed ballet or yoga. (Do not lift more than 12 lbs.)

13. When traveling by air, patients with lymphedema must wear a compression sleeve. Additional bandages may be required on a long flight.

14. Patients with large breasts should wear light breast prostheses (heavy prostheses may put too much pressure on the lymph nodes above collar bone). Soft pads may have to be worn under the bra strap. Wear a well-fitted bra that is not too tight and with no wire support.

15. Use an electric razor to remove hair from axilla. Maintain electric razor properly replacing heads as needed.

16. Patients who have lymphedema should wear a well-fitted compression sleeve during all waking hours. At least every four to six months see your therapist for follow-up. If the sleeve is too loose, most likely the arm circumference has reduced or the sleeve is worn.

17. Warning: If you notice a rash, blistering, redness, increase of temperature or fever, see your physician immediately. An inflammation or infection in the affected arm could be the beginning of lymphedema or a worsening of lymphedema.

18. Maintain your ideal body weight through a well-balanced, low sodium, high-fiber diet. Avoid smoking and alcoholic beverages. Lymphedema is a high protein edema, but eating too little protein will not reduce the protein element in the lymph fluid; rather this will weaken the connective tissue and worsen the condition. The diet should contain protein that is easily digested, such as chicken and fish.