Pathology Report and Decisions

Almost 2 weeks after my bilateral  lumpectomy the surgeon FINALLY called me.

The left side that had hinkey looking cysts/tissue was not cancerous but definitely needed to come out. She said it was more lobular than ductal.

The right side, the breast that betrayed me from the beginning had 2 tumors. One just under the nipple that was now dead. The other that was found on the MRI, that they couldn’t biopsy was 2 cm and ACTIVE cancer. Unfortunately, she didn’t get clear enough margins and it looks like I’m headed back to surgery.

I asked about a mastectomy even if just the right side since we are going back but she still isn’t a fan. She would prefer I be a few more years out.

Also, nothing is going to happen until I have my PET/CT on the 30th.  I have what could be (at least it feels like and acts like) a new met on my 5th or 6th rib. Whatever this is, it’s a hard mass that is painful. It feels like it wants to bust out of my skin and makes it difficult to use my right arm.

So, plan right now is PET/CT and decide if I’m still a surgical candidate and whether or not I also have radiation on the right breast. I will also need to decide what new Aromatase Inhibitor I go on now. If I do have a new spot (or spots) it may be a game changer. I want to keep chemo as far away from me as possible for as long as possible.

The moral of this blog is this:  If you feel that something is best for YOU, and everyone disagrees with you, DON’T GIVE UP.  It’s your body. You know it better than anyone else. BE YOUR OWN ADVOCATE.  Keep pushing and asking questions.

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The surgeon validated me by saying I was absolutely correct in having this surgery because the exemestane didn’t kill it and the PET wasn’t picking it up. Everyone was telling me I was NED when really, I wasn’t.

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The Game Changer

I’ve been having a relationship with NED for the past 16 months. Things were good. Real good. Good enough that one of my Dr’s suggested I take a break from the Aromatase Inhibitor to see if the side effects subside AND instead of monthly Xgeva injections they would be every 6 months. Things were very good.

Next step was the annual breast MRI.

That’s when the game started to change.

This past Sunday, I received notification that there was a message for me in my online medical chart. My MRI was also back. The note was from my Oncologist. There was a problem with my left breast. There was significant thickening of the skin and tissue on the outside – closer to my arm. My Dr asked me if I  had noticed any changes to my skin.

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I immediately into the bathroom and started looking. I have dense tissue so it’s not unusual for one breast to be bigger than the other.  But as I’m standing in front of the mirror I realize it’s A LOT bigger. I lifted up my arm and turned to the side to inspect the skin. FUCK. There is definitely something going on. The skin has discoloration and it feels bumpy. I immediately replied to my Dr’s email and told her what I found.

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After some emails back and forth and a few phone calls I had a late afternoon appointment to see my Dr.

We talked. She showed me the MRI and the one from last year and how the left breast had significant changes and many “cysts”.  She examined me.  It wasn’t my imagination. The skin was different.  She ordered a mammogram/ultrasound/biopsy for the left breast. This was bad.

When you’re diagnosed with Metastatic Breast Cancer and you still have your breasts intact most do not favor a bilateral mastectomy.  No one knows if removing the primary tumor will extend life expectancy. It’s the metastasis that are the concern. I had actually asked twice, most recently in November for a bilateral mastectomy but I was shut down. The surgeon didn’t want to upset my ‘apple cart’ (my relationship with NED. No one thinks about the possibility of another primary breast cancer. They should.

Next Thursday I go for the biopsy and Friday I go back to the surgeon. The plan, for now, is if all is well I move forward with the bilateral mastectomy and remove any possibility of being in this position again. If the biopsy is positive for Inflamatory Breast Cancer I will jump into chemo for possibly 4-6 months. Then surgery and radiation after that.

For those that don’t know, Inflamatory Breast Cancer is the rarest breast cancer.  It accounts for only 6% of those with a breast cancer diagnosis. It’s also agressive.

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The standard treatment plan is 4-6 months of chemo, bilateral mastectomy and radiation.

This type of breast cancer is usually diagnosed late and staged at IIIB or IIIC. This is because there is no ‘lump’ to find. I’m hoping that if this is what I’m dealing with that we caught it early because of the regular scans I get.

How this may impact my overall prognosis is anyone’s guess right now. I just have to hope for the best and pray this week goes by fast. The not knowing is awful.  I’ve been mentally preparing for the worst.

If you’ve had a diagnosis of Metastatic Breast Cancer and you still have your breasts, please, PLEASE get regular MRI’S and make sure you really look at your breasts. Look for any changes. If you notice anything, notify your Dr right away. Don’t wait.

Let my story serve as an example that you CAN get another primary breast cancer even after you’re StageIV.

To be continued………..

How Loud Do I Need To Get Before Someone Hears Me??

The last month has been very frustrating.

It started out with me doing something to my side/rib area while making my bed. I felt a ‘snap’ and it immediately brought me to my knees. I honestly didn’t know if it was a pulled muscle or worse. I had plans to have lunch with my Mom and after she insisted I go to Immediate Care and get checked out. I was having a difficult time breathing. Long story short the verdict was I fractured the rib I had previously radiated. I was a disc. This was on a Thursday.

I managed to get thru the weekend with some breakthrough morphine. Tuesday morning something changed. I woke up in even more pain and was unable to take a full breath. Around 3am Wednesday morning I woke up feeling as if I couldn’t breathe. I was scared. I finally woke up my husband and he took me to the ER. One thing about having Stage IV cancer is that you get taken right in when you go to the ER. I told the intake nurse I had fractured my rib and now I couldn’t breathe and was in horrible pain. My BP was 159/105.  I had an EKG, more X-Rays and a CT w/contrast. The CT was horrible. I was sure I would pass out before it was over. I could NOT breathe. When I finally got back to my triage room, still fighting to breathe, I pushed my call button for help. The nurses couldn’t care less. There was no sense of urgency, they spoke to me in a condescending tone and asked me what I wanted them to do. Um, gee, maybe HELP ME?!?  Finally, the Dr came in and said the tests showed no clot in my lungs and I was fine. FINE?!?  I was NOT FINE. What was going on? I was truly confused.

 

Thursday I had a regularly scheduled appointment with my GP. I went thru my whole story about the rib and the ER. She goes thru my tests, looks at the images and then says “Who told you fractured your rib?” I told her Immediate Care and I gave her the disc. She said…”Well, according to what you had done at the ER, there’s no fracture “. Then it hit me: the reason I was treated the way I was is because they thought I wanted drugs. I was pissed. I even told them I didn’t want narcotics because that wouldn’t fix the problem!  The good news was my cholesterol went down 16 points.

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Still living with the pain, I begin to feel a rattling in my right lung. I have no fever, no cough. The following Tuesday I see my Palliative Care doctor. Again, I tell her what’s been going on with my not really broken rib and horrible pain. She takes a listen to my chest and tells me I definitely have fluid building. She tries contacting my Oncologist. I told her it wasn’t a big deal, I was seeing her in 2 days.

Thursday, I see my local Oncologist and get my Xgeva injection. My local Oncologist tells me she believes I DID fracture my rib. Now I’m really confused. She examines me and checks my oxygen saturation a few ways. Laying down, sitting up and walking around the office. Laying down and walking around causes my levels to drop below 90. She makes a few calls and get a me scheduled for an MRI of my chest wall for later that day. She also suggests that I cancel my trip to Memorial Sloan Kettering. She doesn’t feel I should be traveling. When your Oncologist tells you not to travel, your brain begins to think about all the ‘worst case scenarios’. Chest wall mets, lung mets….cancer progressing.

I knew this would happen eventually. Just because I’m NED doesn’t mean the cancer is gone. Its still there. Its just too small to be detected. I was just hoping it wouldn’t happen until after my son graduates from High School.

The MRI was 60 minutes. There was no way I could have gotten thru it without Xanax. God bless Xanax.

With the MRI done we decided to make the trip to Kettering anyway. I wanted to update my Dr and I had a bunch of films to bring her too. For the 4th time I tell my rib/ER/lung fluid story. Basically, my Dr tells me there are only 2 scenarios. Fractured rib is the problem and pain is causing shallow breathing that’s causing fluid OR Cancer progression and we tweak my treatment. She discusses how there are still hormone treatments to try and other meds to add to what I’m currently talking. We dont necessarily need to jump to infusion chemo.  That alone makes me feel much better. So, the plan is if it is cancer I come back in a week for a biopsy and get a new treatment plan.

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At 5pm my phone rings. Its my local Oncologist from home. No new lesions, no progression, small pleural effusion on right side. Did I hear that right? No cancer?? No cancer.

I was so sure. I was positive. Seems like so many of my friends have been getting bad news or have died in recent weeks it just made sense to me that it was my turn. How is it not? I was numb. I should be happy. I should be jumping up and down but I just sat on my hotel bed and tried to process it. Its difficult for me to trust these tests. I’ve had so many that were read wrong when there was a problem, not to mention the rib – broken, not broken. How do I know this test is really right? My biggest fear is that the cancer is progressing but everyone is missing it. The same way I had a mammogram and my cancer was missed. The same way I had a lumbar/thoracic MRI and my spinal lesion was missed. My fear isn’t irrational. Its happened before.

I guess I just have to wait and see if the fluid keeps collecting. Wait and see if the pain eventually subsides. Until then I’ll just keep going on and try not to think about it.

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The Meaning of it All and Other Questions

My heart is so heavy right now. Several women I know, that I have corresponded with are having such a rough time and there isn’t anything I can do about it.

Two are struggling with the treatments they are enduring. They are not able to walk or do simple day to day things we take for granted. Its difficult to read updates because normally these women are so vibrant and active.

Most of the time, the treatments that are meant to help actually make things worse for a period of time before they get better. Its not like taking an antibiotic for a sore throat and 24 hrs later you feel relief.

Another woman has been moved to hospice and the end for her is imminent. She has two young children that want their Mom with them but instead have to say goodbye.

Its just all so overwhelming. We form special bonds with women in similar circumstances over Social Media. We give advice, offer support, joke around, discuss treatments, side effects. Sometimes we are lucky and get to meet face to face. All the while, knowing one day it might be us that needs the prayers. Its just not fucking fair!

Some people think I should be thanking God it’s not me, but I can’t. I can’t do that because I don’t want ANYONE to be going thru this and one day, this WILL be me, and I can’t hide from it. I can’t hide when I have reminders like this week when I woke up having trouble breathing and in so much pain. It was very difficult to wake my husband and let him know I needed help. I had such feeling of guilt. I felt guilty for not ‘sucking it up’ and waiting until morning. I felt guilty for waking him up knowing how hard he works during the day. I knew by waking him up it was guaranteeing a trip to the Emergency Room.

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Why is this my life now? Why is this any of our lives? Why are some of us being robbed of just living our lives? Being robbed of watching our kids grow up? These are wonderful people that have things to offer. It just isn’t fair. None of it.

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On Monday, a large group of us (women living with Metastatic Breast Cancer and others) took over Twitter and Facebook in order to give a face and a voice to metastatic breast cancer. The purpose was to trend certain hashtags and educate people of the breast cancer truths many are never told. The Twitter goal wasn’t realized as it had been intended to but we did on Facebook (at least I think we did). Every time I posted or sent a tweet I did so with these women in mind. In fact some even included their picture. Bottom line, on Monday we made an impact and let our presence known.

I don’t have the answers to my questions and I probably never will but one thing is true: We will never be forgotten. None of the women that have passed from this disease will be forgotten and those left to scream and shout about MBC awareness won’t be forgotten either when its our time.
Even though this disease is a son of a bitch twatgoblin, I couldn’t be in a better group of company. I love these women and I’m proud to stand beside them.