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.
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.
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.
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………..
Hello my name is Tatiana, I have metastatic breast cancer, have bone metastases, now already they do not go out in the bone gammagraphy and the tumors of the breast already are not seen. My doctor wants to operate on me because I have answered very well to the treatment, I am taking letrozol and xgeva. This weekend I am going to have the visit with the surgeon.
I am very nervous.
That’s good that you’ve responded well to your treatment. I did too…within 6 months I was NED. I know you’re nervous …that’s totally normal. Listen to your gut (as well as the Dr’s) but your gut is the most powerful voice you have. And don’t be afraid to get a second opinion just to see what someone else says. I’m sending you positive vibes. Xox
I am so sorry that you are going through this. It’s just so unfair. Also all the not knowing, as well as this being IBC in the other breast on top of mets. Egads it’s just so much at once. I wish I had the right words for comfort. You are in my thoughts and prayers as I try to bring you bursts of love an light.
You are in my thoughts as you go through this crazy time of waiting for answers. Thank you for sharing your experience and educating me more on inflammatory breast cancer.
Hi, I just found and began to follow your writing here. I am very glad that you shared this bit, as painful as it is. I detect a reluctance in my onc. team to pursue breast issues, unless I bring up a complaint. I will take very seriously your advice. Best wishes for fortitude with your upcoming tx regimen. Doesn’t this just suck? In great empathy, Mame
Thank you! A new breast cancer has always been my worst fear and have voiced this concern before. Definitely be your own advocate and if you feel something isn’t right keep pursuing until you’re satisfied.
Sorry to hear this. The waiting for this or that result is the hardest part. Because we live rural the specialists in the city have switched back to postal mail even for test results and there’s something so odd about this. It feels like a form of cosmic denial where the whole universe decides to be polite—like when was life polite before? I hope the news is not bad.
In this day and age where everything is technology driven, I can’t believe they would be using ‘snail mail’ to communicate test results. I would go nuts. Thank you for the well wishes. I hope it’s nothing too.
In some ways the mailing of results to rural patients is an interesting lesson in systems design that’s teaching me to be less sure of things. Used to be a real fan of design, thinking anything could be fixed with the right planning and performance. It’s a bit hard to explain but a layer of pretending has been stripped away by cancer and I can feel and see things with more honesty. Also brings on impatience with being asked to be “nice” when it really means being phony.
Have you thought about writing how you feel while waiting? It might help.
Do you think that the decision to stop the aromatese inhibitor had something to do with this happening to you? I can’t help but wonder as I read your words if the medical community was more concerned about your romantic life than your health. Not sure if that’s true, but the two references to Ned by docs seems skewed.
I had only been off of it for a week, so no. I don’t think the two are related at all. The decision to stop it for a while was made because I have gained almost 40lbs because of the exemestane. Dr thought it would help me lose it if I was on a break. My romantic life is rock solid! 😉
Oh, sweetie. *BIG TIGHT HUGS* This stupid fucking disease.
I am not stage 4 (yet) but my breasts are very dense (dx at 32). I get an MRI yearly. My worst nightmare, besides being stage 4, is developing another primary cancer (like that damn triple -). I do examine my breasts more often than I should (almost everyday) because my anxiety level is pretty high, even after 3 years out from diagnosis. I think about removing the breasts so I will have a conversation with my Dr.
I wish you good luck and hope the outcome is favorable to you. Thank you for sharing your experience which could affect any of us regardless of our cancer stage.
One day at a time.
It’s very s scary. I was always terrified of TNBC but now I realize that IBC can be TN too. Because my estrogen has been almost nil from medication I don’t believe this could be an ER+ cancer. It’s very scary. I hope you never have to be in this position. Definitely talk with your Dr. Good luck!