Cody Updates by Mom

Hey there.  We now have most of the questions answered from the two appointments that we had this week.

First, for anyone that just wants a quick overview you can read this part and then skip the rest.  For anyone that wants the detail feel free to keep reading.

Quick version: Yes, I am going to be having chemo, I will likely still need radiation and will definitely be starting hormone therapy to stop my estrogen output after I am done with my treatments.

Long version:

I am going to start with the appointment with Dr. Fox on Wednesday as some of the pathology report plays a part in the result of the treatment being determined.  I gave some of the pathology report from when I spoke to Dr. Fox on the phone after surgery however this was a more in depth conversation about it.  The tumor was 5.1cm x 4.7cm x 3.0cm.  This is a VERY large tumor.  They also found two other small tumors starting in the left breast in two separate areas.  The type of tumor that I had is considered a multicentric type of cancer.  This means that it is known to start multiple locations.  The tumor was directly next to the skin on my left so any skin that was touching the tumor was removed.  This means there is less skin on the left side and will take longer to stretch for the expansion for my reconstruction.

Dr. Fox is certain that there will not need to be any additional surgery.  She talked a little about my next appointment with the oncologist.  She has been preparing us for the reality of chemo all along.  She said that because of my age (I continually keep hearing “you are VERY young” from every doctor), the size of the tumor and the type (invasive lobular carcinoma) that it was likely that chemo is a reality.  There is no surgical way to remove any an all cells that may be in the process of changing to cancer.

A little bit about cancer:  Everyone has the capacity to have cancer.  Cancer is where the cells in your body morph or mutate into cancer cells.  If they are invasive then they cause the cells around them to mutate as well.  Having cancer in your family can be an indicator that your cell structure may be more susceptible to changing to cancer.  Breast cancer is not genetic unless you have this special, rare gene.  I am being tested for that in July.

Ok, so my final things from my visit with Dr. Fox.  She told us that our oncologist was a very good Dr. and she was happy that we have him as our cancer doc.  She wanted to warn us though that he looks very young.  She said you will think the Doogie Houser is your doctor. 🙂  Yep, she was right.  We also talked about Dr. Mann.  She said he is very good but dry.  She can never get him to crack a smile.  I mentioned that maybe its the odd ones that make good doctors.  She agreed and said that he may be a little odd but for all of the plastic surgeons he constructs the best nipples she has ever seen.  Nice.  At least in the end I will look as natural as possible.  I will see Dr. Fox after all of the treatment is completed to learn what my long term process will be to ensure we keep on top of any issues.

Dr. Fox is going to have us see an occupational therapist to discuss lymphedema risk prevention.  I have a 1-3% chance of getting lymphedema.  Because they removed 3 lymph nodes on the left and 2 on the right I have a small chance of having either or both arms swell dramatically which is not reversible.  The occupational therapist will give me exercises and information about how to ensure that I do not end up in the 1-3% group that gets this.

So now our appointment with Dr. McCormack.  He was very nice and explained everything clearly and answered all of our questions with complete patience and never made us feel that we had to be done so he could move on to the next person.  I cannot tell you how much that helps when you are getting difficult news.  The first thing he talked about was recurrence.  Because I had a very large tumor, which was in the lobe and multicentric and I am also very young, my chances of having a recurrence of the cancer in other tissue in my chest or surrounding area is pretty high.  They are in the business of curing the cancer not just removing it when it comes back.  (I kind of prefer that approach)  By treating me with chemo my chances of recurrence are reduced by 50%.  By also treating me with hormonal blocking medication for 5-6 years (basically putting me in menopause now) my chances of recurrence are reduced another 25%.  This puts my at a 75% reduction in recurrence with my treatment.  I really like those numbers.  I will be having 4 chemo treatments each 3 weeks apart.

Chemo treatment is all different depending on the type of cancer you have.  Because of this they need to ensure that there are no surprises.  This means additional tests.  To be honest I am getting pretty tired of my body being poked, prodded and scanned but I also do not want any surprises.  I have been scheduled to have a bone scan and a CT scan next week to ensure that I do not have some other cancer in my system.  It is unlikely however if they treat me for breast cancer and I have some other cancer it can be very bad.  We don’t want that.  They also took a significant amount of blood work on Friday to test for multiple things to ensure I am healthy enough for this treatment.

I will also be seeing a Dr. of Radiology to determine if radiation is necessary.  The tumor was close to the skin and very large.  I am also very young so they may want to treat me with radiation.  That Dr. will make that determination after my chemo treatment is completed.

So here is the testing/treatment plan and my upcoming appointments:

Monday – I get to see Dr. Mann and get expanded again.  I will also talk to him about the adjustment to my expansion process.  I cannot have expansions done the same week that I have chemo.  This will extend the time for expansion.  I also cannot have the permanent implants put in until after radiation is complete (if I have that) because it can hurt the implant.  Don’t want to do that.

Tuesday – This is what I am calling the really icky day.  I will be having both the bone scan and CT scan.  I will go in around 11.  They will do the injections for the bone scan.  This takes 3 hours to work through my entire system.  Don’t worry, I won’t be bored.  During that three hours I will be drinking the stuff needed to do the CT scan and then have the CT scan.  Once the CT scan is done it should be roughly 3 hours so then I will be taken in to get my bone scan completed.  Then I am coming home to take a really long nap!  Really not looking forward to Tuesday. 😦

Dr. McCormack will be contacting us with the results.  If all is well we will continue with the schedule as planned.

Thursday – Jim and I will be attending a chemo class.  This class will go over all of the side effects and how they will be treating the side effects.  Dr. McCormack has already discussed these with us but they want us to take the class.  We will also get a tour of the infusion room where the chemo will be administered.  The side effects are different for each person.  The for sure ones are hair loss and white and red blood counts being reduced.  I will need to be diligent to stay away from people who are sick and basically eat/drink healthily.

Monday 4-28 – We will be meeting with Dr. McCormack, they will do more blood work and I will have my first chemo session.  I will start losing my hair within three weeks of the first session.  They will provide me with medication to reduce nausea and other side effects.  If you are interested, I will be receiving two different chemo drugs, Cytoxan and Docetaxel.

If all is well my chemo sessions will be on the following dates.  5/19, 6/9, 6/30.  We will meet with Dr. McCormack prior to each chemo session to ensure that I am doing well with the treatments and do not need additional meds to help with the side effects.

After chemo we will meet with the radiology doctor to determine radiation.  After that we will start the hormone medication that I will take daily for the next 5 years or so.  I will also need to meet with my gynecologist about removing my Mirena and what options I have for on that side of things.  Since the tumor is estrogen positive I cannot have any type of birth control device that gives me estrogen anymore.

After all of the treatments I will be able to have my surgery to get my permanent implants put in.  This is day surgery and I will be home the same day.  After that surgery I will see Dr. Mann about completing the reconstruction with him creating my nipples and also tattooing on the areola.

Once I am done with chemo my hair will grow back and the majority of the side effects will stop.  We will continue to doctors more often for the remaining of my life to ensure that I do not have any additional issues.

Finally, how are we doing?  Don’t really know yet.  It is a lot to absorb and yesterday was a pretty bad day all around.  Today is better.  The pain of the implants is getting more bearable daily so that is helping.  Jim is at my side at all appointments and decisions which is the most help that I can ask for.  I did finally break down last night but after a good cry I feel much better today.  We will get through this and in a year this will all be a memory.

Thank you again for all your prayers and support.  Unfortunately we will still continue to need them for the next several months.

Caring Bridge Comments

Sandy Schuck|Jun 16, 2014 7:11pm
Thanks for posting this link on Facebook. You have been through a lot and I have been praying but now reading this, I can be more specific. God’s love and strength continue to be with you.