Worried about breast symptoms after hyserectomy for endometrial cancer

@gynosaur42 Oh, dear. I'm sighing too just considering how good you've felt as you've been healing from surgery a few weeks ago.

I'm going to share what I would do. I would send a note or call your GYNOncologist and write what you wrote here; what you have noticed, where the tenderness is and enlarged glands. Since you were scheduled for a mammogram on 5/4/23 at home, I'm thinking you were probably "due" for a new mammogram. I would ask for a screening mammogram while you are at Mayo during your visit on 4/18 and see what your Mayo team says about that. When I first had a mammogram at Mayo I was asked to arrange to send the mammograms from the past few years from my local hospital. I did that and it was very straightforward. As you know from your experience when you were last at Mayo such appointments can be added, if available, while you are already in Rochester.

I can understand and relate to your new worries. Yes, 5/4/2023 isn't all that far off but why not get Mayo involved in your care ? It might ease your mind. Oh, and when I've had a mammogram at Mayo I've received my results and a note on the portal from the referring provider within 24 hours and sometimes the same day. That has been very reassuring to me.

What are your thoughts about these suggestions? How are you feeling today?

Hi Helen,

Thank you SO much for your response! I agree that this is a very good plan.

One issue I'm having is that I can't seem to get into the Mayo portal (I keep getting bumped off after it gives me an error message that it is having trouble communicating with the server). I haven't been able to pay my most recent bill, access my tests or send a message to my GYN ONC team. I will call the nurses first thing tomorrow.

I was able to get a LITTLE sleep last night and have kept busy today, trying to imagine that I've caused this flare-up by something I've been doing.

My guess is that someone from either the local or Mayo team will want me to get this checked soon, either with a mammogram or an ultrasound. It does still feel frightening when I think about it (or, heaven forbid, look online), but I am telling myself I can't DO anything about it until I have more information, so shouldn't stress over it if I can just enjoy the moments in my day. It was sunny here today and I was able to walk to a neighbor's with my dog and husband, and I was able to attend a class that included guided meditations and very, very gentle stretches. I feel blessed to have had these opportunities over the weekend.

Again, I am grateful for you support and everyone else's from this group.

Sending hugs to all who are waiting, worrying or facing something painful or frightening,

Gynosaur

@gynosaur42 Hello, again. Were you able to get into the Mayo Clinic patient portal? If not, did you talk with the GYNOncology nurses? They are so good about answering and getting you to the person you need to speak with. Were you able to find out what they would like for you to do? Once you have a plan it can take some of the worry away. At least that is my experience.

You have such wonderful coping skills. The first, reminding yourself what you can and cannot control is a huge one. How wonderful that you had a sunny day and could walk your neighbor's dog. Much appreciated by the doggie, I'm sure, too! Guided meditations, and gentle stretching all allow for that important body work to get a person away from distressing thoughts and into their body. Can you tell I love these coping skills?

My next Mayo Clinic appointment is close in time to yours. My appointment will be on April 19 when I find that my worries ramp up I tell myself this is normal (for a cancer surveillance appointment). I know whatever the outcome will be OK - radical acceptance.

Thank you for your kind wishes to others in our Support Group. These are sent from me right back at you.

Hello, Helen/naturegirl and all,

Update (novel): I messaged with the Mayo GYN ONC team (and every other member of my large and often-confusing medical teams) and heard that the place to start in this instance was my primary provider. The Mayo folks were the kindest and most immediately responsive regarding my questions, not surprisingly. Monday, 3/20, was a long, frustrating day. The primary provider was swamped and offered the evening of 3/27 as an opportunity to get examined so a referral could be made elsewhere for a diagnostic mammogram and ultra sound. I was grateful and accepted that. The next day, Tuesday, she was able to offer me some of her administrative time at the end of the day, so I rushed around the house all day (couldn't sit still...baked "thank you" muffins for my primary and her amazing assistant) we rushed down there (2 hour drive). Our car blew a cylinder on the way, but we made it anyway, leaning forward and fingers crossed. She did the exam, made the referrals and offered me a very-much-appreciated hug. I love these folks, which is why I drive so far. The drive home was iffy, but we made it. Car is probably on the way out after 10 years of trusty service.

With more much-appreciated case management gymnastics from my provider's assistant, I was able to get in for the mammogram yesterday. Haven't driven yet since the hysterectomy because roads here are SO icy/bad/bumpy, but my husband woke up with food poisoning, so I made the drive over the mountain in our remaining car (with questionable brakes) in low gear the whole way. It turned out to be easier to be the driver than the passenger!

Results were that I have a bruised breast. The very kind radiologist said that breast tissue responds to bruising through fat necrosis (breakdown). I have NO idea how that happened given that my only regular exercise has been walking circuits of our first floor and I haven't bumped anything to my knowledge (and my dog doesn't jump up...the radiologist asked). But, I DID increase my caffeine intake (from zero to 90mg) the day before I found the sore/swollen spot on my breast and with the genuine buzz that that generated, I DID use a shovel to move a few scoop fulls of heavy, wet snow to help my dog find her precious pink ball. That represented a BIG increase in my exercise, so who knows?!

Anyway, I was told that ANY changes in breast tissue should be reported right away to one's primary doctor, so all that calling was not the wrong thing after all.

Gosh...this is such a roller coaster! I am beyond relieved that I do not, now, have to add breast biopsies + to this journey.

Other good news: I have been gently reminding my sister with the same diagnosis...endometrial adenocarcinoma...to get back on her regular schedule of follow-up checks. She went yesterday and was OK on that score, but with high blood pressure.
I spoke with my niece (daughter of the sister who died last July from an unspecified gynecological cancer that recurred and metastasized). When she is able she is going to try to find out what her mother's diagnosis was so we can educate our daughters and granddaughters for their own safety.

I am beyond grateful for this opportunity for support. I am sharing SO much to let others know that I am gaining an increased understanding of not only how challenging any gynecological cancer diagnosis is, but how it occurs within a context of everything else in our lives and that everything else affects how we cope with it. I send care and kindness and hope and energy (and capacity to be persistent, where needed) to all of you who are facing any piece of this.

So relieved that it was a bruise and not cancer ! Prayers for better days for all !

@gynosaur42 Well, this is surely a relief. A bruised breast. You also encountered kind providers who reminded you that any change in breasts should be reported and investigated.

Even though it's a good two hours to travel to your primary provider and so worth it. It's wonderful that you did not have to wait until March 27 to get this evaluated. Now, you can relax a bit before your trip to Rochester, MN for your follow-up appointment.

We are in a rural area of the midwest and often drive 3 hours away for some medical visits. Rochester is 7.5 hours by car. I often worry about a car problem before or during the commute to a medical appointment. So, of all things to happen on the way to your primary care provider your car "decides" to blow a cylinder. After your follow-up at Mayo maybe it will be the time to start looking for another automobile as a sort of celebratory gift for yourself?

I will be on my way to Rochester on the day (April 18) of your appointment. I'll look forward to hearing when you are ready to share what you learn on that day.

Thank you for your kind wishes and the reminder to all of us to be persistent and tenacious in getting care for ourselves.