My Cancer Story:

[Joanne S]

I’ve received a few private inquiries regarding my diagnosis, and treatments and surgical decisions. I decided to respond publicly instead of privately in hopes that sharing my cancer story may in some way help someone else. As you probably already know, each breast cancer is different in many ways (even though some are very similar); therefore, what is best for one person may not be best for someone else.

In August 2006, age 50, I received a letter in the mail from the diagnostic center indicating my mammogram was abnormal and I needed to contact my doctor immediately. However, being the obsessive person I am, I performed a very thorough self breast exam. It took me several hours, yes, several hours, I stayed up all night. I was determined to find the lump, and at the last moment, I did find the lump. It was very deep next to the chest wall, located at the very bottom of my breast, deep behind the mammary fold.

Luckily my lymph nodes showed up enlarged on the mammogram when compared to my previous year’s mammogram ---otherwise, everything else on the mammogram appeared normal---and I would have never been prompted to find the lump. It is beyond the area that gets imaged on mammograms---that's why it didn't show on my mammogram. I was expecting to find a tiny, round pea size lump, but instead I found a mass that was irregular in shape, somewhat similar in size to a breakfast sausage link. I had two physicians give me breast exams and neither found any lumps. I, fortunately, was able to point it out to them.

I had a core biopsy with ultrasound guidance within a couple of days. I was devastated with the diagnosis of Invasive Ductal Carcinoma, Stage III, Estrogen and Progesterone positive and HER2/neu positive.

The following week, I had a mediport implanted for chemo. Due to the size and location of the cancerous lump, surgery was delayed several months so that I could have Chemotherapy in hopes of possibly shrinking the tumor and avoiding excessive surgery (having to get my chest wall removed).

I had 4 months of Chemotherapy. The first four treatments were dose-dense Adriamyacin and Cytoxin every two weeks, followed by four treatments of dose dense Taxol every two weeks. I had one treatment with Taxol only. Following my first Taxol administration, Herceptin was given alone the next week. Taxol and Herceptin are not given at the same time the first time. In case there is a reaction to either one, the doctor can identify which one of the two drugs caused the reaction. Along with the following 3 Taxol infusions, Herceptin was administered every two weeks. Since then I continue with Herceptin every three weeks for up to one year.

I was one of those patients that suffered from fatigue and bone pain throughout my chemotherapy and became a couch potato; however, I had a very positive response to Chemo. My tumor size reduced over 90% in 4 months.

There are so many options for lumpectomies, modified radial mastectomy and simple mastectomy on non-cancerous side or none on that side; and many different options and time frames for reconstruction. I discussed this extensively with my physicians and researched all my options by reading books and surfing the internet. I preferred to have the DIEP procedure; however, there was no physician in Michigan that performed the more complex reconstruction surgery. To my knowledge, It is only performed in 5-6 states in the US.

I decided to have a modified radical mastectomy on the left/cancer side and a simple mastectomy on the right side along with immediate reconstruction (tissue expanders under the pectoralis muscle). I had the surgery in February 2007 (approximately 6 weeks after I completed Taxol). Of 16 lymph nodes removed, six were cancerous. I was very pleased with my surgical decisions, but extemely disheartened when I learned that my surgical pathology revealed I had much more cancer in my left breast that never appeared on any of the diagnostic studies; mammogram, CT scan, body scan and MRI previously performed. My pathology also showed pre-cancerous hyperplasia on my right breast. I was very disappointed about all of this, but all that this did was confirm I made the right surgical decisions. My doctors explained that mammograms and other diagnostic tests do not come with a 100% guarantee, but are valuable screening tools.

I had two drainage tubes with little bulb reservoirs on the ends to collect fluid, they are called Jackson Pratts. I had to empty these several times a day at home and measure the fluid output; as well as, change my gauze dressing and apply Silvadine Cream to the incisions. My doctor would not remove the drains until the fluid output was less than 30 cc per day. Most patients get their drains out within 10 days after surgery. I had lots of fluid so I had to leave them in for 5 weeks. Once removed, I visited the plastic surgeon weekly for saline fills/expansions of 50-100cc on each side. Some of the expansions were painful. Finally I completed the expansions in June 2007. At that time, I started radiation.

My plastic surgeon does not perform any expansions during or after radiation (only before radiation starts). Additionally, my radiation oncologist will not allow any expansions during radiation because mandatory, precise positioning measurements for radiation would no longer be accurate for each of my 25 treatments.

I was having periods prior to Chemo, but I have not had any periods since the start of Chemotherapy. I have been on Tamoxifen since June,2007

I had a breast infection on the left side and had to be hospitalized for four days of IV antibiotics after my second saline expansion. I also had very beneficial physical therapy in April through June, resulting in improved range of motion and flexibility in my left arm and shoulder. When my therapist went on a medical leave for her pregnancy complications, I was released from PT. Needless to say, I was not happy about this. Although I perform my stretches every day at home, the condition of my chest muscles and left arm/shoulder continued to degrade---it is just not as beneficial as Physical Therapy manipulation combined with using special physical equipment..

Unfortunately, I still suffer with severe pain in my left chest and underarm. My right side (non-cancerous side) is pretty firm, but it is just fine. Since May or June, I continue to suffer intermittently from fevers ranging from 99-102. Unfortunately my oncologist and plastic surgeon are not sure of the origin or if it is a side effect of the Herceptin. I take 800 mg of Motrin 3-4 times daily in order to tolerate the pain and keep my fevers down..

Four weeks ago I had a surprise gall bladder attack and was hospitalized. I had surgery to have my gall bladder removed. Lying around recuperating for a week and not doing my stretching exercises increased my breast pain even more.

I am anxious to get the tissue expanders out and get permanent implants---hopefully within the next couple of months. I still have to decide on whether to have saline or silicone implants. My left breast (cancer side) is still very hard, tight and painful. As anticipated, this increased with radiation.

My oncologist recently referred me to a physiatrist who specialized in breast cancer patients with pain and lymphedema. I will be starting PT again as soon as they have an available opening.

It’s my understanding that Tamoxifen does not work as well when ER+ patient is HER2+. Therefore, I am planning on getting my ovaries out since I am hormone receptor positive, and then I'll be able to stop taking Tamoxifen and start on Arimidex.

If I could make any decision over again, I’m not sure I would opt for immediate reconstruction, but then again I understand that many women who do not get immediate reconstruction end up never getting any reconstruction at all. And that’s OK too. At this point in my life, they are merely cosmetic. So if I have to get these tissue expanders out to eliminate my pain, I’m game.

Thank you for reading my story. I am not a medical professional. I can only advise you to be sure to learn as much as you can about your personal situation before making any decisions about your care.

Additionally, I am open to any options or suggestions you may have from your experiences. Please don’t hesitate to let me know if you have any further questions or concerns. I would love to hear your cancer story too.

Best to you!

[Bev]

Rough time. Have onc check out estradiol levels, to see if you are truly post menopause. You don't necessarily need ovary removal to start an AI. Tamox works great, AI's better. Some reports of tamox resistance but I think you are too early in the game to worry. Many choose to do it as insurance, but it's whatever you are comfortable with. I tend to try to hang onto my parts (wisdom teeth included) as long as I can. You never know when they will come in handy. I'm sure you will get a few other opinions to guide you. You just have to decide with the best info you have available now. Best wishes, Bev

[Joanne S]

Good thinking Bev,

I've had enough surgeries this year, so I don't need any unnecessary surgery that may not reduce my cancer risks. I will investigate further, including the post side effects of having ovaries removed, and I will have my estradiol levels checked too---Then I can make ovaries' decision. I appreciate your input! Thanks so much!

Best to you!
Joanne

[Catherine]

Joanne, I think your personal story will be helpful to many. You did a good job of describing the sequence of events and decisions. I still continue to treasure the experience of this website. I think it is important that newly diagnoised (sp) understand how similiar but personal (different) each DX is.

All the best, Catherine

[kcherub]

I have a question...I have never heard that tamoxifen doesn't work as well when there is Her+ as well. Can someone elaborate for me, or point me in the right direction? I am 35, and considered premen. unless chemo has wrecked it!

[Joanne S]

I posted your question under a new thread:
"Tamoxifen effectiveness in HER+?"
Perhaps we'll get a bite there.
Thanks Krista!

[Joanne S]

Thanks Catherine, I appreciate your continued support.

Best to you!

[kcherub]

Joanne,

THANK YOU!!!