SANTA TAKES BACK HIS BEST GIFT

Remember that part about the initial lymph node pathology being 85% accurate with a 15% chance of it changing on final pathology? Judy got the news yesterday afternoon from her surgeon that there are miniscule cancer cells in the sentinel lymph node. This means that she will have to return to the hospital for surgery to have the rest of the lymph nodes removed. She will also require chemo and possibly radiation. The Surgeon feels that since the number of cancer cells are miniscule, the chances are very good that they have not gone beyond the first lymph node, but they can't take that chance. Judy was hit pretty hard by this latest development, says that she doesn't want to hear that the chances are good because they have been wrong every time so far. She wants to wait for the FINAL pathology this time before getting her hopes up.
Her 2nd surgery will be on Friday January 2nd at 2:00 PM.

Hello!

I am typing to you with my left hand. I decided to write while I have a little bit of energy.

I came home on Christmas. They tried to send me home on Christmas Eve but I said no way. I was in too much pain. I was still getting Morphine from an IV and pushing the button to get more Morphine almost every ten minutes. I was very glad I stayed one more day.

Nothing has really sunk in yet. People keep telling me how wonderful it is about my lymph nodes and I believe them but like I said, It hasn't sunk in yet. My awake time which is only a few hours a day is focused on not throwing up and getting the pain under control so I haven't been able to process the good news. I figured that it took me over a month to cry in the first place about having cancer that it might take me a while to deal with this. Plus I am so out of it from the Vicodin. We think the nausea is either from the pain and/or the vicodin and having it on an empty stomach. I am eating but not a whole lot yet. When I do eat I crave saltine crackers or chocolate shakes.

I am kind of thankful that I only have a limited view of my reconstructed breast. When I look down I see a lump for a breast which is more than I expected so that pleases me. I can not see my scars when I look down which I am ok with. All the doctors and nurses say that it looks great so I will trust them on that. I am not ready to look at the scar yet.

I am recovering quickly. As of yesterday I have been able to get out of bed by myself. For some reason the pain is more tolerable when I have a pillow under my arm. I still need help with that.

Thanks again for all of your love and support. It has been amazing and so helpful!

Judy

Surgery Update

2:08 PM

Judy is out of surgery and in her room. She did great through both surgeries! Both surgeons said that she will most likely be going home tomorrow. She said that she was crying when she went into the operating room at the thought of losing her breast. Her surgeon comforted her and held her hand until she was asleep under anesthesia. She is already asking how soon she can see what she looks like. She is still very groggy but refuses to go to sleep. She is uncomfortable but in good spirits or at least pretending to be. They expect to have the final pathology report by Monday which will determine what treatment will follow. Keep sending love and prayers.

Surgery Progress

11:06 AM

The first part of the surgery is over. The sentinel lymph node had no cancer cells on preliminary pathology. This is great news! The plastic surgeon is doing his part now and expects to be in surgery for 1 1/2 - 2 hours. Mention was made that they may let her go home tomorrow. More updates to come.

P.S. Judy wanted to make sure we noted that that she hates the surgery socks and wants to know why she couldn't wear her underwear her own socks to surgery!!! Why does she have to be naked from the waist down when they are working from the waist up?! Another one of life's mysteries!!

Getting closer

My hospital bag is packed...mostly with books and magazines and crosswords that I don't think I will touch but packed anyway. I also packed my ipod, pictures of Daphne, some candy (because let's face it - I am still me), a journal, very few clothes, pez dispensers that Andy and Becky gave me (they are all of Disney princesses. I packed two of them: Mulan because she is a strong warrior and Jasmine because she is hot) and a few dvds.

My call time has now been changed to 6am! Then at 7am they will take me to the nuclear medicine department and inject into my breast a nuclear substance and then observe where it goes so they can track which is the first or sentinel lymph node where the lymph system travels from the breast. The cool part is that they will then take something like a Geiger counter and hold it against my arm pit that will signal the flow of the lymph system from the breast and help them identify the sentinel node (the first node to which the lymph travels). My mom said that this is an uncomfortable procedure but to that I had to laugh because I can't imagine it hurting more than taking off my breast.

From there I go back to day surgery which should be around 8am and wait until 9am. I am sure that I won't just sit there and wait. I am sure they will be taking my blood pressure, start an IV, meet the anesthesiologist and things like that. I am hoping that my mom can go with me wherever I go until it's time for surgery. I also hope that since she works there and knows most of the doctors and nurses working on me that she can pull some strings. Apparently she requested that certain nurses and anesthesiologist work on me. So, that's good.

Thank you to everyone who is sending me love via thoughts, texts, phone calls or e-mails. I truly appreciate and welcome them all.

Going to go eat dinner with my family now and then go chill out and get some me time. I am pretty ready to call it a night even though I didn't wake up till 9am and then took a two and a half hour nap and it's only 8:30pm!

There is a waiting room with a computer so my mom said that she and my sister will update the blog from the hospital. FYI.

Love you.

Judy

Counting down the hours

Hi. I have been counting down the hours till surgery since I woke up this morning. 20.5 hours from right now. I will be waking up Tuesday morning around 4am to take a bath in hibicleans before I head to the hospital. I will leave my parents house around 4:45am to get to the hospital and check in at 5:30am! Today I have been packing my hospital bag and doing laundry, etc. to get ready.

Not much else to write right now but I just wanted to share.

Physical and pre-op testing

I went to the hospital yesterday to get a physical to get a medical clearance in order to have surgery. They took some blood and a urine sample and a chest x-ray. Everything came back good! Apparently I am a little dehydrated. That is because I now have a cold. I have been trying to do nothing but rest because my doctor said that they would not put me under if I have cough because it is not good for my lungs. I have never panicked this much over a cold before. Neither has my family.

I have started counting down the days till the surgery. What seemed so far away a few weeks ago now seems way too soon. I guess you could say that I am getting anxious.

Final Meeting with Plastic Surgeon

Hi. Yesterday I met with my plastic surgeon (Dr. B.)for the final time until the big day. It was interesting to meet with him again (after not having a good experience with him the first time). I definitely felt better with him this second time around. Although his personality was a little bit harsh, I realized that a good amount of me not liking him the first time was because of where I was at emotionally in this process.

I came to the meeting more aggressive than the first and more prepared for his chuckles toward my questions. I think I also realized that the majority of the women he works with do not have breast cancer. I am going to him to feel whole again and he does not understand that. He looks at the world and sees how he can make it more attractive where I look at the the world and see how I can make fun of it. So, really he is doing his job. I just wish he was a little bit compassionate about it.

He gave me kind of vague answers to my questions. Mostly saying that it all depends on me and my pain level and what I feel up to. Some bullet points below:

*He said that some women come spend only one or two nights in the hospital. He said depending on my pain level that there is a chance that I could be home for Christmas.

*He said I will probably not feel like doing much at all for five to seven days.

*He said no driving for ten days to two weeks.

*He showed me some arm and shoulder exercises to do so that my arm and shoulder does not get stiff and said I should be able to raise my arm all the way above my head in four weeks.

*I will see him every week or two and he will add about 60ccs of saline each visit.

*They will send me home in a binder and that I should wear a light sports bra for a while after the surgery.

He wrote out a prescription for me for vicodin and synthetic penicillin that he suggested that I have ready for when I come home from the hospital and they went over what pain meds. I can and can not have from now until the surgery. They told me not to eat eight hours before surgery and that the night before and the morning of the surgery I will need to shower with hibiclens.

He also reviewed the stages:
1st stage: Putting in the expanders and visiting his office every one to two weeks to slowly fill the implant with saline.
2nd stage: The temporary implant is removed and the real implant put in.
3rd stage: Tattooing the areola and constructing the nipple.

So, my next step is to complete a physical and get a medical clearance from the physician saying that I can have the surgery. There are also some pre-op test I need to have done. My physical is this upcoming Thursday and I am hoping to get my pre-op tests done that same day.

Thanks for reading! Take care.

Miscellaneous notes from Mom Fabjance

I am so proud of the way Judy has investigated all of her options, weighed her choices, recognized her needs, and made her decisions. This is a strange & frightening new territory she is exploring which use a foreign language all it's own. The process she has used and is using to maneuver her way through it has been impressive.

She came full circle on the reconstruction issue and decided on the implants rather than on using her own tissue. The reasons that led her to this choice were: 1) The reconstruction process will be started immediately although it will be many months before the finished product is seen. 2) The incision to her abdomen if she were to use her own tissue would prevent her from lifting Daphne and holding Daphne on her lap during the healing process. 3) Using her own tissue would leave her with a very large abdominal scar. I think her friend Elizabeth's insights helped her when she commented that it sounded like she would be damaging one part of her body to make another part of her body better.

She decided to stay with the first plastic surgeon, even though personality wise he was definitely not her favorite. Choosing the second plastic surgeon who was on staff at another hospital would have required finding another general surgeon at this same hospital, which would have slowed down the whole process. Also she has been assured by many people (people ranging from the Oncologist to previous patients of his) that the first plastic surgeon has excellent surgical skills with good outcomes. He also is in her insurance network where the second plastic surgeon was not, so financially he is a better option (which wouldn't matter if he were not a good surgeon).

We were initially very concerned about the late date of the surgery, given the fact that she had been told by the general surgeon and by the oncologist that she needed to have her surgery by this week. After talking with the Breast Health Specialist and the General Surgeon at Good Shepherd, we were assured that there is no danger in waiting until 12/23. They always give patients a target deadline because if they didn't, people would delay indefinitely making decisions and arranging surgery. Since Judy's tumor is hormone receptor positive, this means that is a less aggressive tumor and therefore more slow to grow and spread.

The genetic testing has been put on hold for now since the company that performs the test (and there is only one company), requires an advance payment of $1600.00 before they run the test. This $1600.00 is equal to Judy's deductible of $1300 + $300 which is the portion of the test (after the deductible) which her insurance does not pay. She decided to wait until her 2009 deductible has been met, which should happen some time in Jan or Feb after radiation therapy/chemo are started. She needs to have the genetic testing done, but the results will not impact anything immediately, so she can wait.

SURGERY DATE IS SET!

The date has been set! I am scheduled to have my surgery on Tuesday, December 23rd at 9am. Merry Christmas everybody!

I received a call from my plastic surgeons office today saying that I need to meet with the plastic surgeon one week before the surgery and that I need to get a physical and get a note from the physician saying that I can physically have this procedure. There will also most likely be pre-op blood tests and other tests that need to happen before my surgery.

Radiation Oncologist Appointment

On Monday December 1st Judy met with Dr. Ruffer, a radiation oncologist at Good Shepherd Hospital. At this time we are not sure if radiation will be needed – that will be determined after the Mastectomy, once they look at the tissue. We wanted to get his opinion as to whether or not having implants before getting radiation (if needed) would hinder the effects of the radiation in any way. Also, if he saw more recurrences of breast cancer in patients who got breast reconstruction before they did radiation.

Dr Ruffer explained that the need for radiation would be determined after surgery. The staging process included getting the cancer out, seeing the lymph nodes and then deciding on treatment options – local & regional (surgery/radiation) and systemic (chemotherapy). This would depend on the size of the tumor, if there are positive margins after the breast is removed, and if it has spread to the lymph nodes. She has a greater chance of needing radiation because the cancer is multi-centric (that even though they are removing the breast there is still a chance that there can be cancer cells on the chest wall).

She would do chemo first and then radiation. Radiation would be for 15 – 20 minutes per day, 5 days per week for 5 – 6 weeks. Dr. Ruffer suggested that Judy do radiation with his partner at Illinois Masonic in Chicago, Dr. Yajnik so that she does not have to make the trip from the city for that many days in a row. Radiation will make her tired and may take weeks if not months to get better however it is usually not debilitating and she should be able to continue working while getting radiation.

It was Dr. Ruffer’s opinion that the implants would have no effect on their ability to get to the cancer with radiation and that it would be better for her to get immediate reconstruction if she was getting implants. Radiation can cause thinning of the skin and scar tissue which can make it more difficult to do reconstruction after radiation. If Judy decided to go with a TRAM, it would be best to do a delayed reconstruction due to the effects of the radiation on the skin.

Now the decision is up to Judy . . . which procedure does she want to get? Which plastic surgeon? Immediate or delayed reconstruction? And the decision had to be made today because the surgery has to happen this week. As Judy told the doctor, “I can’t usually decide what I want for lunch and now I have to decide what kind of breast I want?” Overwhelming doesn’t begin to describe it.

As of Monday night, Judy has decided to go with implants and immediate reconstruction. At this point we are just waiting to hear back from the surgeon as to when surgery will be scheduled.

SECOND OPININION PLASTIC SURGERY APPOINTMENT

Wednesday Nov 26, 2008, met with Dr S. in Morton Grove. MUCH better experience. Felt she was given fully informed choices of the three types of procedures he performs with the pro's and con's of each. After examining Judy, he feels that she is a candidate for the TRAM procedure which uses the tissue from the abdomen to reconstruct a new breast. Because she has limited tissue and fat in her abdomen, the end result would be a size 34 B or 34 A instead of the 34 C which she is currently. She could then have a reduction on the remaining breast in the future. She had been previously told that with a saline implant she would need a lift procedure to the remaining breast. So, it appears that with either an implant or her own tissue, she will require a procedure on her other breast for "symmetry". From a plastic surgeon's perspective, her choices are: 1) Immediate reconstruction with tissue expanders to be followed by saline implants - or - 2) Delayed reconstruction using her own tissue with tissue from either her abdomen or her back. The abdominal procedure leaves a large abdominal scar. This surgeon uses a microsurgical muscle sparing technique which uses very little if any of the abdominal muscle. The procedure itself is an eight hour procedure. The back procedure leaves a smaller scar on the back, takes three to four hours, but still requires an implant. The shortest, less invasive of all of the procedures is the implant procedure. The implants look less like and feel less like a breast, they also are not considered to be lifelong, but last 10-15 years. These are decisions to be made in the next couple of days.

Our next meeting is with the Radiation Oncology physician on Monday Dec 1st to see if he has an opinion as to whether she should have immediate or delayed reconstruction since she may need radiation therapy. He may recommend that she wait for reconstruction until after radiation therapy is completed to assure the maximum benefit from the treatment. After her meeting with him on Monday, she should have all of the information she needs to make her decision and then surgery will be scheduled for sometime that week.

GENETIC COUNSELOR APPOINTMENT

Tuesday 11/25/08: Appointment with Genetic Counselor Shelley. Once again, lots of new information. She took a cancer health history going as far back as Judy's great grandparents, aunts, uncles, cousins (& their children), siblings (& their children). Just from the preliminary history, Judy seems to have about a 10% risk of carrying the breast cancer gene. There are three reasons it is important for a woman to know if she carries the breast cancer gene: 1) for any daughter which she might bear since there is a 50% chance the gene would be passed to any daughter. 2) for her sister (s) since if a woman carries the gene there is a 50% chance that any sister will carry the gene. 3) if a woman carries the breast cancer gene she is at a much higher risk of developing breast cancer (or breast cancer in the other breast), and of developing ovarian cancer.

That said, there is only one company that does the test, and the cost of the test is $3200.00. Health insurance may or may not pay for some or all of the cost of the test depending on the insurance company, and on their assessment of whether or not they feel you are at a high enough risk of carrying the gene. Shelley said that she has no experience with Judy's health insurance as she has not heard of the company. The only way to find out if your company pays for the test, and if so, how much they will pay, is to have the blood drawn (which Judy did), and sent to the testing company. The company will contact her insurance to see how much is covered. If Judy's cost is $375 or less they will run the test, if her cost is greater than $375 they will contact her to see if she wants it run or if she wants the blood and paper work destroyed. So between now and then she has to figure out how much this information is worth and how much she is willing/able to pay for it.

Thank you

Thank you for your love and support! It's so wonderful to read these right before I go to bed. I am sure to have have sweet dreams.

The meeting with the second plastic surgeon was great by the way! It didn't make my decision any easier about what kind of reconstruction to have but I liked this doctor a lot. His whole staff was wonderful. I felt so comfortable around them all and felt I received risks and benefits to each procedure. What I CAN tell you is that I will go to this surgeon for whatever kind of reconstruction I decide to have whether it is immediate or not. Notes from that appointment to come.

Thanks for the love!

Judy has cancelled her original second opinion plastic surgery appointment and has scheduled one with another plastic surgeon who comes highly recommended. Her new appointment is on Wed Nov 26th at 1:15 p.m. Surgery will be scheduled based on decisions made by her following this appointment. We'll keep you posted.

NOTES FROM ONCOLOGIST APPOINTMENT 11/21/08

1) Again much paperwork to fill out, busy office, crowded, friendlier overall feel. Appointment was a 1:30, didn’t get seen until 2:00, stressed because Judy needed to be in the city for After School Matters at 4:00, and I had told them I would be back at work around 2:30. Did I mention that we couldn’t get an appointment in the Barrington office, but had to go the McHenry office which is 30 minutes north of Barrington?
2) We were called back in by Dr W’s nurse Cara who introduced herself by name and role title and told Judy how sorry she was about her diagnosis. (Someone who cares!). She looked through Judy’s paperwork, took her temperature and blood pressure and told us Dr W would be in shortly.
3) Dr W came into the room, introduced himself to Judy as Tom Weyburn, shook hands with her and told her how sorry he was about her diagnosis. He then shook hands with me and told me that he was sorry to be seeing me under these circumstances (I work with him at the hospital).
4) He asked Judy what she knew and understood about her diagnosis. She stumbled on a few points and he said “that’s ok, this is not a test.” He said that he would be covering a lot of information, and asked who wanted to start. Did we want to start with questions or did we want him to start. We asked him to start.
5) He had already reviewed her pathology results, her mammograms and ultrasounds and her MRI. He had already spoken with Dr Witkowski (the general surgeon). He sat and looked through all of the paperwork Judy had filled out, commenting that she is overall very healthy.
6) He said that based on the MRI he felt that Judy is not a candidate for a lumpectomy (also called breast conserving therapy), but that she needed a mastectomy due to too large of an area of involvement and too many areas of involvement (multi-centric tumor, meaning many centers.
7) He said that post surgical treatment could not definitely be determined until after surgery. The need for chemo is determined based on the size of the invasive tumor (2cm or greater needs chemo), on the MRI it appears that the tumor is between 1.5-2.0cm. Chemo is also determined based on whether or not the cancer has spread to the lymph nodes which will not be known until after surgery. He said it is not definite that she will require chemo, but he indicated that his feeling is that she likely will. There is also a possibility that she will require radiation therapy which will also be determined by lymph node involvement and by whether or not they get “clean margins” (the outer edges of the tissue removed are free of cancer cells), he felt that based on the MRI the surgeon will likely be able to get clean margins.
8) We discussed the bad experience with the plastic surgeon Dr B. He empathized with us and answered more of our questions than Dr B had answered. He said that after implants, to check for breast cancer recurrence they do MRI’s because the implants prevent you from getting a good mammogram film. He said that he has never met Dr B., but he has seen patient’s who have had reconstruction by Dr B., and that technically Dr B. is a good surgeon, has good outcomes and his patients end up with good results. He recommended a second opinion plastic surgeon with a question to the plastic surgeon if there is any contra indication to immediate breast reconstruction with the possibility of radiation therapy. We asked his opinion about the urgency of scheduling surgery and he feels that it should be scheduled in the next week or two.
9) He definitely recommends genetic testing based on Judy’s age, but he does not think she is high risk for carrying the breast cancer gene, since I did not have breast cancer pre-menopausal, nor did my sister, or any of my aunts, and since Cathi does not have breast cancer.
10) He discussed the hormone receptor positive and the HR2 negative status of her tumor and said that these are two very good signs which indicate that this is a less aggressive tumor type.
11) He examined her and like everyone else who has examined her was amazed by the almost insignificance of the exam compared to the significance of the mammogram and the MRI. He said that based on the MRI he was expecting to see an enlarged, inflamed breast. He said that he was not able to palpate any lymph nodes, which is another positive sign.
12) He spent an hour with us, at no point did we feel rushed, at the end he asked if there were any other questions we had, and encouraged us to call with any questions if we thought of any. He will see Judy next after her surgery.
13) He told her that he feels that she will do well with this cancer, and just needs to get over this “bump in the road.”
14) We both really liked him. I felt encouraged and more positive after seeing him. I saw him again later after I returned to the hospital and he was seeing his patient’s at the hospital. He asked how Judy was doing after their appointment and all of the information discussed. He said again that he felt that the plastic surgeon we saw (Dr B.) was technically very good, that on his exam of Judy he noted that her abdomen was indeed flat & tight (which might indicate that she is not a candidate for a TRAM), that she needed a second opinion and that he hoped to see her scheduled for surgery in the next week or two. He also gave me a release (at Judy’s request) for her to have a massage or to participate in yoga at the Wellness Place (a resource/support center for Cancer patients). All of their services are at no charge.

NOTES FROM PLASTIC SURGEON APPOINTMENT

Prior to making an appointment with a plastic surgeon, Judy had done extensive research from legitimate medical resources and through the American Cancer Society as to the options available for breast reconstruction and had learned that breasts can be rebuilt using implants or expanders + the tissue remaining after the mastectomy – or – with flaps of muscle or with muscle and skin obtained from the abdomen, back or buttocks and then transferred to the chest wall. She was leaning towards a procedure using muscle and skin from her abdomen because even though it is a more extensive procedure (longer surgery by 3 hours, longer hospital stay, longer post surgery recovery time) and leaves you with weakened abdominal muscle (unable to do sit ups, risk of possible abdominal wall hernia in the future), it is a more permanent procedure as it is done with your own tissue, it ages as you age, sags when you sag, gains or loses weight as you gain or lose weight, and looks and feels more like your own breast. She had learned that the implants, while a less invasive procedure, require frequent follow up visits to the plastic surgeon for expansion of the tissue expander, followed by a final outpatient surgery to have the implants actually placed. The implants carry the risk of leaking, rupturing during follow up mammograms which are necessary to detect breast cancer recurrence, result in poor quality mammograms which may not detect cancer recurrence and run the risk of something called capsular contractions (a firm fibrous scar that forms around the implant which can cause pain and can affect the shape of the breast). She learned that implants can last from a very short time to many years but should not be considered “life time” devices. 1) On first impression, the office was very business like, the staff not warm and friendly like in the Breast Center where Judy had the biopsy or in the surgeon’s office. There were signs up and brochures all over about botox treatments to reduce wrinkles, and face lifts, and breast reductions, and facial hair removal. (As a side note, there was a TV on which we didn’t look at initially but could hear someone talking about the skin of the breast. We both assumed it was an educational video about some breast procedure until we looked up to see someone basting a turkey on a cooking show.) Judy said to me, or maybe I said to her “I don’t like this office”. 2) Judy was asked to fill out pages of information on medical history, allergies, medications etc. After a short wait, we were ushered back into a consultation room by a woman who might have introduced herself by name, but did not identify herself by title or role, i.e. nurse, receptionist, etc. She then asked Judy many of the questions which Judy had answered on the paperwork she had filled out and noted her answers. She then proceeded to go into a prepared speech all about breast implant procedures, how they are done, length of hospital stay, recovery period, follow up visits, etc. I finally interrupted to ask if Dr B. performs reconstruction procedures using a woman’s own tissue like the one that uses the abdominal tissue & muscle called a TRAM procedure. She said that “I don’t know you’ll have to ask Dr B” and then returned to where she had left off in her prepared speech. She next had Judy initial some forms indicating that she (whoever she was) had explained to Judy all about the implant procedures and then said that Dr B would be in to see us shortly. She gave Judy literature to read which covered different types of breast reconstruction procedures (the literature was produced by the companies which manufacture the implants) – no bias there! 3) Dr B came into the room and introduced himself. I think he asked Judy how she had been diagnosed and asked us if we had brought the pathology report (which we had not). Every other appointment we have, the office has contacted us and told us exactly what we needed to bring. No problem because I know the pathology report by heart. Dr B. then asked Judy many of the same questions she had first answered on the forms and second answered to the woman (no one ever looked at her paperwork, or at the previous person’s notes.) Dr B. then proceeded to talk all about the breast implant procedure. I again interrupted to ask if Dr B. performed the procedures using a woman’s own tissue, specifically the TRAM. He told me that he indeed did do this procedure, that in fact he had performed the first TRAM ever in the whole Chicago land area in 1990 something, but that he now does very few of them because they are such a major procedure. He said that when people go on the internet to look up these procedures they read all about how wonderful they are and how the TRAM is esthetically superior, as it is, but they do not read about all of the downside to the TRAM. He proceeded to tell us how invasive of a procedure it is, long surgery time, long recovery time, weakens the abdominal muscle, risk of hernia, all of the things we already knew. He did tell us that it is a “one time deal”, that if she should subsequently need a mastectomy on the left side, the TRAM could not be done a second time and an implant would have to be done on the left and the implant and the TRAM would not match. This was new and useful information which we had not previously considered. He then went back to talking about the implants. He never mentioned any of the risks or downsides to the implants until I specifically started asking questions. What is the risk of leakage? Dr B. “Rare, I can’t say never, but now the implants are filled with a gel which is self healing.” What about the lack of permanence of implants? Dr B. “Not true, they are just as permanent as your own tissue”. What about the fact that your own tissue ages, gains & loses weight, etc better than implants? Dr B. “Not true, neither the implants nor your own tissue age, or gain/lose weight”. What about the issue with mammograms with the implants? Dr B. “Not a problem”. At this point I stopped asking questions. He next took Judy into an exam room where he determined that she did not have enough fat & tissue in her abdomen and was therefore not a candidate for a TRAM. Judy’s reaction was “Really?” Lastly he discussed when he would be available to do the implant procedure, for the week of Thanksgiving his only availability would be Friday, but he said that he really didn’t see it happening for a couple of weeks. 4) As you can probably tell from these notes, there is a little bit of a trust issue with Dr B. He comes highly recommended by people I know and trust, as far a technical skill and good surgical outcomes. We thought we were going for a consultation in which we would be presented with ALL of the options for reconstruction which include 4 types using your own tissue and then the implants. We expected that we would be informed of the pro’s and con’s of each of the procedures and then after exam, Judy would be advised about which procedures she would be a candidate for. We felt we were being sold a “bill of goods”. It felt like Dr B was getting a “kick back” from the implant company. I know that all of this is likely not true, I know that procedures using a woman’s own tissue are MUCH more lucrative procedures for a Plastic Surgeon, so there is no financial incentive for Dr B to push the implant procedure over the TRAM procedure. I know that it is very likely possible, maybe even probable that Judy is not a candidate for the TRAM procedure, but I also know that she did not get her needs met at this appointment. This is something she will have to live with for the rest of her life, and she needs to KNOW for sure that the implant was her only option. 5) This is all very discouraging also because on top of the sense of urgency to have this “bad breast” removed, everything now needs to be delayed for a second opinion Plastic Surgeon appointment. Also this is one more physician’s bill. Should she not have immediate breast reconstruction at the time of her mastectomy and just proceed with her mastectomy? Everyone seems to recommend immediate reconstruction if possible (one less surgery, one less time under anesthesia & with delayed reconstruction you run the risk of scar tissue developing which can interfere with the reconstruction). A lot to think about, a lot of decisions to make, a lot of stress to be under. Judy has an appointment with a second plastic surgeon on Tuesday afternoon 11/25. In the morning of the same day she has an appointment with a genetic counselor.

Ultrasound/Mammogram/MRI

Judy's ultrasound and mammogram of the left breast which were done on 11/13 show no signs of cancer. She had an MRI of her left breast on 11/18 which showed no cancer. MRI of the right breast confirmed what the ultrasound and mammogram and biopsy had shown, extensive areas of breast cancer in the right breast.

Pathology Report

Pathology Report: 1) Infiltrating (Invasive) Ductal Carcinoma Grade 2 – Starts in a milk duct but then the cancer cells break through the wall of the duct & spread into the fatty tissue. Cancer cells can then spread into the lymph nodes and to other parts of the body. 2) DCIS (Ductal Carcinoma in Situ) – Non invasive, still confined to the ducts where it started. If not removed it will progress and become an invasive cancer in 6 – 7 years. Because the two areas of cancer cells cover such a large area of the breast, this is a “bad breast”. To ensure that all of the cancer cells are removed, his recommendation is that a mastectomy + removal of a sentinel lymph node be done. The sentinel lymph node is examined under a microscope during surgery to look for cancer cells. If no cancer cells are seen by the pathologist, no other lymph nodes will be removed during the surgery. There is a 15% chance that on further examination of the lymph node (after surgery), the pathologist will find cancer cells. If this happens, you will have to return to surgery for an axillary lymph node dissection (removal of the remaining lymph nodes under the arm). This can cause swelling of the arm (lymphedema). For a simple mastectomy you will remain in the hospital for 24 hours. It is possible to do immediate breast reconstruction surgery at the same time as the simple mastectomy. This can be done with saline or silicone implants, or with you own tissue obtained from the tummy or the back. For a simple mastectomy + reconstruction you will remain in the hospital for 4 to 5 days. Reconstructive surgery does not need to be done at the time of the mastectomy. Studies have shown that women do psychologically better if they have the reconstruction at the same time as the mastectomy. There is a high probability that you will require chemotherapy. Even in the early stages of the disease, cancer cells can break away from the breast and spread through the bloodstream. These cells usually don’t cause symptoms, they don’t show up on an x-ry and they can’t be felt during a physical exam. But if they are allowed to grow, they can establish new tumors in other places in the body. Chemo is therefore give to women who are at risk of developing spread of the cancer (usually any woman with invasive breast cancer unless she has a very small area of tumor or has a grade 1 tumor). It usually lasts for 4-6 months and is given 1 time per month. He wants you to get the opinion of an oncologist (chemotherapy physician) before surgery. He recommends that you have genetic testing for the breast cancer gene. It is significant for you, for your sister and for any female child that you might bear. Should you test positive for this gene, the recommendation would be for a mastectomy also on the left and to have your ovaries removed. This is not a test that needs to be done right now. After treatment for breast cancer it is recommended that you do not get pregnant for 2 years. After that, studies have shown that women who do get pregnant & give birth have a decreased risk of recurrence. Two hormones in women – estrogen and progesterone – stimulate the growth of normal breast cells and play a role in many breast cancers. The hormone receptors are important because cancer cells that are ER or PR positive often stop growing if the woman takes a drug (Tamoxiphen) that blocks the estrogen and progesterone from binding to the cells. Tumors that are hormone receptor positive are less aggressive tumors. Your tumor tested strongly hormone receptor positive. This is good!! He did not palpate any enlarged lymph nodes. He could barely palpate the tumor. He feels that the invasive tumor is not that large. (Also good!!)

Welcome

Hi. Is this as strange for you to read as it is for me to write? If you are reading this it is because you know that I have breast cancer and you want to know what's going on and want to stay connected. I still don't believe this is real so it's hard to know what to write. I find that I start to write several times a day but don't know where to start. Some minutes I am feeling powerful and strong and some minutes overwhelmed (most minutes overwhelmed) and want to just sleep. I am waiting for someone to pinch me and wake me up from this dream but so far no one has so I am going along with it.

Here it goes:
The story... I felt a lump. A hard lump about the size of a marble about four months ago. Sometimes it was hard to find so I sat with that information for a while. Partially because I didn't know if I REALLY felt something and partially because I wanted to see if the size changed during or after a cycle and to see if it was painful (of course after three months it DID become tender from feeling it all day long for three months) and partially because my insurance sucks.

Eventually I trusted my instinct and visited Howard Brown Health Center. Their Women's Health program is for low income and under insured women. That's me! Every staff member I have worked with has been wonderful by the way. A couple of them even check in with me several times a week to see if I need to talk or if I want info on support groups and/or counseling.

The doctor at Howard brown did a clinical exam and did not feel much of a difference between the breasts but said that I know my body best and that if I feel a lump then the next step was to get an ultrasound and mammogram to make sure everything was ok. Side note: All of the other doctors I have seen since have not been able to feel anything either. They can not believe that I found a lump and think it is amazing that the doctor at Howard Brown sent me to get further tests. Side note #2: Someone remind me to send that doctor at Howard Brown a thank you card.

A week later, on Halloween, I had an appointment for an ultrasound and mammogram at Illinois Masonic. That experience, although I could tell something was not right, was funny. First was the ultrasound. I could not see the screen because it was behind me but once the tech was there she said, "Wait here. I am going to go see if the radiologist needs to see you". While she was gone I peaked at the screen but could not tell what anything meant. She came back a few minutes later and said that he did not need to see me but that he wanted me to do a mammogram. I said, "So when do I do that?" and she said, "Right now." So we went down the hall and I met another tech who performed the mammogram. She said the same thing as the other tech. I could tell by both techs tone that something did not look right. In fact the first tech said that I would get a call in two to three business days and then the second tech said, "Call your doctor tomorrow". Thirty minutes later I received a call from my doctor at Howard Brown telling me that they found a mass. And the rest is history. Or information that you will read below if you would like to learn about all of the juicy details.

So, from here I have to decided how I want to proceed with breast reconstruction. They want to perform the Mastectomy within one or two weeks max. All of the other blogs are notes from different meetings with different doctors. My mom took those notes and they are great.

I am going to try to focus on myself until the surgery. There is a place called Wellness Place that is near my parents house that I am looking into that offers services at no cost to those living with cancer. Score! They offer Yoga, T'ai Chi, massage therapy, healing touch therapy, reflexology, art therapy and much much more. I am very excited about this. I do not know how to focus on myself and am getting a cold because of all of the stress so I think this place sounds perfect for me.

This has made me realize that "people are good". I am not joking. No matter what kind of a day I am having there is at least one time each day where I stop and take a deep breath and smile and think, "People are good". I feel so loved and blessed from everyone in my life. Thank you! I have been touched and amazed at the support I am receiving. It would be impossible to get through this without it. Know that I read the e-mails and cards and texts and listen to messages but am being bad about returning them. That's not from the cancer though. That's just Judy being Judy. But now I will blame it on the cancer!

With all of this said you will be happy to know that I have a big list of funny observations or ideas that have come out of this (and we are only four weeks into this). Get ready GayCo. I will have a dozen scenes written for the next show about cancer!

I am ready to get through this scary "bump in the road" as everyone is calling it. I am ready to stop thinking about this 24/7. I am ready to fight cancer and kick it's ass. Let's do it!

Love you all,

Judy

p.s. Make sure to download Melissa Etheridge's "I run for life" song. It's about breast cancer. I have it in my car and listen to it at least a dozen times a day. Very powerful. Daphne requests it by saying, "Run".