Starting/declining hormone therapy Nov, Dec, Jan 2018
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We are all amazing and so strong!!!!!!!!!!
Spoonie….I admire you so. We are all supporting you and giving you ((hugs)) !!!
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Thanks really doesn't do ya'll justice, my friends but thanks none-the-less for the continued support and encouragement. I don't really have any news, other than to say that I spent all day at the hospital. 8 am until 3:30 pm. I'm exhausted. My SO was very grateful for the pictures, especially the ones of my lymph node involvement. In fact, when she saw them, she said immediately that she would be ordering a Chest CT, on top of the 3D and US. When I left today, I was under the impression they would be calling tomorrow with results. While I am exhausted, I am relieved to have this day over.The waiting is done and now some answers will start trickling in. Anyway, woke up from my nap, just to post, and then head back to bed for the night. This exhaustion for the past few weeks has been awful....hope it's nearing an end too.
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Night night - hope you sleep well. Fingers crossed and wishing on stars for good results and answers tomorrow.
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Thinking of you Spoonie!
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Don't laugh, but I was hitting refresh on this site all day yesterday between the bazillion meetings at work hoping for a Spoonie sighting and update. Hope you are sleeping right now and a deep restful sleep at that.
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Gentle hugs and love coming your way, Spoonie!
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Covert Affairs is one of my fav TV series.
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rjes - I love that show and sorry it was cancelled. Have to say that Eyal was one of my favourites, just something about him. I binge watched all five seasons when I was recovering.
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Spoonie- just checking on you! Waiting sucks! Hope you heard something today!
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Oh, Hello Eyal! I try to follow him on whatever tv shows he's on. He's on the latest Tv series "Blood & Treasure" - but I couldn't get into it. he is always popping up in something. Covert Affairs is on iTunes and Prime = so it says. I also like the TV show "The Closer" with Krya Sedwick.
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Hi all --- this week has been....hell....and it's not even Friday yet.
I don't have much to update. But knowing me this will be LONG anyway. (Update - yep it's long! LOL)
The only thing I can for sure say is that when they did the Limited US of just my L nipple (SO cancelled my 3d MAMMo as she said "We'll learn more from the US than then Mammo", in hindsight, not sure how I feel about that decision.
On the limited US, They did not see anything cancerous in the new lump, nor anything directly underlying it. So that is good news. However, they didn't tell me what to do about it. Do I watch it? Do I see Derm? Should it be removed? What is it? What's in my US report? You know....basics. Ugggh.Also, problematic is that my SO refuses (I cannot fathom why) to have the radiologists compare my Chest CT to my prior ones from 2009 and 2018. There are some "maybes" seen in my scan and there is the issue that according to my Tech/Radiologist the Chest CT she ordered would not be able to scan the nodes in question above my clavicle. I'm a bit concerned about why she order that scan in that case, but what's done is done. At least I know the nodes in my chest are mostly clear -- "shotty semi-enlarged prevascular nodes seen in the mediastinum" (area between heart and lungs) was what was mentioned in my path. Hence why I wanted this compared, since they did NOT compare it to my prior scans.
Ugggh what a nightmare. So much energy is used up speaking up and being my advocate....I'm sooo tired of it.
On top of that, my SO completely (after the appt) dismissed my nipple pain/symptoms and had her nurse call me to say "Scans are clear. See you in a year." I kid you not that was word for word what came out of her mouth. I was irate....but politely asked the nurse my concerns and questions. She said she would ask my SO. I'm also waiting to hear if she would be willing to do that punch biopsy to cross Paget's off of the possible dx list, nipple wise.
Next day, I hear back from the nurse....get this ----- THEY REFERRED ME TO SEE MY CURRENT CANCER REHAB DOCTOR TO BE ASSESSED FOR POTENTIAL LYMPHEDEMA!!!!!!
Meaning, they didn't remember Nor look in my file to see that they actually were the ones to refer me to that specific Rehab Doc back in NOV 2018, who then referred me to my amazing LE PT, who I've seen weekly for the past 7 months as she treats me for Breast Lymphedema.
Yet, apparently they don't know this????? Don't care???? Obviously so.
And, because the lymph node issues seen in my Chest CT are questionable, she gives me no further plan. I'm on my own. Still waiting to hear back from my SO's nurse for answers to the rest of my questions I had originally asked her. You know, like a plan, for follow-up timing, anything other than what they suggested which was this: "Take Evening Primrose Oil capsules for 4-6 weeks and let us know how things are going with the nipple pain.". <face palm>
After dealing with this kind of treatment for 25 years as a Spoonie, I was livid and quite broken to have to face it again in the cancer world. Thankfully on Wednesday, my LE PT and my Oncology Social Worker were on my side, empathized with my frustration and situation, apologized for the run around I was obviously being handed, and then brainstormed with me on what to do next, as my Lymph Nodes/Swelling in my neck only continues to grow day by day.
They figured, and I agreed, that best thing would be to see my PCP and to schedule another follow-up with my Cancer Rehab doc. They also told me, and I agreed, to go see a movie, do something fun, and stay distracted. I went to see John Wick 3 and was thoroughly entertained.
Fast forward to today. I saw my PCP and she was HORRIFIED to see me in the state I am in, with my neck all aglow like Christmas! She walked in, saw me, and said "What....in the world....is going on with this <gestures to my neck>???"
It was a HUGE relief to finally feel like, after this entire week of feeling dismissed, that someone finally saw the urgency here and was taking me seriously. One thing she noted was that I had seriously lost 3 pounds in 4 days. Not my pattern, not at all, especially since I confided in her that I'd been stressed and been emotional eating my favorite cake and having 2 bottles of wine in that time. How did I POSSIBLY lose weight? She said, hmmm we will watch that to see that weight doesn't continue to just come off for no reason. She then ordered a chem panel, cbc, thyroid, the works, plus a Mono test. Had the results in under an hour since she placed them as STAT.
OMG have I ever said how much I love my PCP???! She is the best.
Anyway, labs came back. Thyroid ok. Chem ok. CBCs/Meta Panel -- some issues. Her note "Though all is in range, if we look historicially at your levels in these 7 categories, each blood draw they are on the rise, gradually. If this trend continues you will have elevated levels that we do not want to see elevated within the next 2 months. We need to check these again in a month".
Mono was negative. I really had my fingers crossed for that! At least I've been down that road twice before and though it sucked, it goes away. Not this time. Sooooo my PCP has ordered a Thyroid/Clavical/Neck ultrasound to find out what is behind this swelling in my neck. Is it fluid? Is it tissue? Is there a mass? Is there a cyst? Who knows???? All we know is day by day it increases. I kind of feel like I have the neck of Dwayne Johnson at the moment, like The Rock. Not a good look a chick, let me tell ya.
Fingers crossed that they can work me into the US schedule tomorrow. Would hate to wait all weekend. But will do what I must. Answers are coming. Just still hoping that this is all benign somehow, and it's not Thyroid Cancer or Lympoma (as my 3 brothers & a sister had Thyroid cancer, plus my other brother died from Non-HOdgkins). One day at a time, SPoonie. One day at a time. LOL.
Thanks everyone for reminding me I'm not alone and that I'm in your thoughts. I so appreciate it. I just hadn't had any spare energy to post until tonight.
Oh before I go, just thought I'd leave a few of the entries for the "How Big Can They Go??? constest". Tune in next week to vote for the winner! LOL Eye roll. Just so mentally relieved that SOMEONE cares and is helping figure out what is going on. Off to bed. Hope you are all surviving your own weeks, may the be MUCH MORE peaceful than the one I'm living through. Hugs and healing heading your way.
Today - seatbelts haven't been fun for the last week. It's getting old. Ugggh.
The 18th - First day the seatbelt was like, "Yo, neck, you in my territory. Back the F up, k?!"
the 24th.....Just me and my "lymphies" chilling....hmmm I'd rather not, right?
(normal for this compression bra is just like any other bra, just a small indent, no lumps etc, just smooth sailing to wherever that skin be going)
On the 24th -- enjoying The Rock neck completely. NOT.
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Spoonie - thanks for sharing all this. We ARE on your team, supporting and worrying and empathizing. Glad that your PCP is on her game, and being responsive and proactive. Neck swelling--ugh! You were already living with a lot of stuff before bc, I realize. So sorry you're going through this. I'm sure it takes a lot of energy to just advocate for yourself, as you mention. Keep us posted.
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Wow, just wow. That stinks.
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Spoonie, I am beyond baffled by your SO. I will happily call her and yell at her on your behalf. ;-) I’m so glad your social worker, PT and PCP are on top of things and are so supportive. I continue to wish for the most benign outcome for you. We are all here no matter what!!
Hoping everyone has a good weekend! My husband and I are headed to upstate NY for a family reunion. It’s a 7 hour drive - wish us luck!
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Spoonie- DAMN! I "suffer" with truncal LE also and it leads to so many "extra" worries. I get lumpy, knotty and swell in my neck. It goes up the back of my neck toward my head. I have medium length dark hair so its hidden. It looks LE related to me. The US will show if its cellulitis. I love my PCP to!! She will act immediately if I go to her with a concern. My RO will to. I have a new MO and i think he will but I've only seen him once.
Keep us posted when you feel like it. We all are lifting you up! (While flipping the SO off!)
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Thanks everyone. This has be a new level of "what in the neck" to be sure. Haha that's my autocorrect for you and I'm gonna let it stay!
That is really reassuring to hear, Vargadoll. Thanks for sharing that tidbit. No one I've spoken to so far had even mentioned the possibility that this is LE related. Maybe because I do my LE LMD pt and include my neck and it didn't change? My LE PT did not think this was LE but who knows, maybe it was too early to tell at that point for her. Either way, I will now root for it to be LE like I was rooting for Mono!
Will keep posted when I know more. So hard not to think the worst. If I had to grade myself Is get a C. Doing an average job of staying in the realm of Occams Razor & rational thought. Lol
Green Harbor - > enjoy your reunion and safe travels!
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Hey Spoonie: well doesn't your SO suck . I'm with GreenHarbour we should all phone her. No One should be dismissed or their symptoms ignored. Wishing you a benign outcome. When you can keep us in the loop (we worry about you). Try have a fun weekend do something moderately crazy and give all the worries the weekend off. Hugs and good wishes
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Aw Spoonie, I'm furious at your SO and so glad you have a good PCP. I wish you didn't have to use your considerable medical bureaucracy wrangling skills, but I'm glad you have them and I'm cheering you on!!
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Thanks for the laughs Salamandra & GiddyUpGirl! Can never have too many of them, to be sure!
Good news is that my PCP was able to get my US scheduled at 2pm today, SOOOO it's possible I may have some sort of answer this afternoon. Fingers crossed.
Either way, if I have enough spoons this weekend, I'm heading to the county fair where hopefully I can take your advice and do something "moderately" crazy! Bahahahahaha.
ETA - got another portal message from my SO this morning. they think my swollen neck is all normal and related to a bug bite and will resolve on its own either that or perhaps I have developed LE. FOR THE LOVE OF PETE!!!! Also, they AGAIN (not just on Tuesday) but again today referred me to go see the Cancer Rehab doctor I ALREADY see and to begin treatment for LE. <<<eye roll of the largest kind>>> I will be calling their care coordinator there, whom I have a decent report with and just politely ask wtf is going on over there.
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oh dear spoonie! Hope you get answers soon! Thank goodness for your PCP. Mine too has been worth her wait in gold! When the first biopsy attempt caused a hematoma and I needed to wait four months and six tries she got me an MRI stat, when my MO wouldn’t order a bone density she got one done, and discovered I had osteoporosis from the AI. I think sometimes the MOs don’t see the tree for the forests. Thank God for a great PCP,!
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Spoonie- gezzzzh!!! Your SO office has no clue about LE! A bug bite can be deadly! I got bit last year and ended up with a bacterial infection from HELL! I was almost hospitalized! I had to take mega antibiotics for WEEKS!!! Glad you got an appointment...I'll be waiting with you for answers and a solution!
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Already have results of the US. Multiple reactive supraclavical lymph nodes on both sides of my neck seen. One of which " This palpable level 5B lymph node measures 1.5 cm in length with short axis diameter 0.6 cm." Not a great thing to read since from my Googling, 5B lymph nodes tend to be harbringers of bad news.
Along with that I have another lovely present, a "6 x 7 x 8 mm right Thyroid nodule" that will need follow up imagining in 3 months time. (This is from my PCP, will see what my MO will want to do with the results).
Both my sister and my brother had Thyroid Cancer so this is a bit scary to learn. My PCP said when my final bloodwork came in, turns out my RBC is elevated and so are my Absolute Eosinophils. She mentioned that I've also lost 5 pounds in the past week and a half -- definitely haven't been trying though I should be. I've eaten more cake, chocolate, and wine in the past week than regular food so I think I should have gained, if anything. Le Sigh. And my fatigue continues to worsen. I know those are all not great things.....ugggh.
I'm waiting on a call from my PCP to see what the next step is - do we watch and wait? do we biopsy? What will my MO say?
At least I know I'm not crazy and things are going on and I don't have to wait an entire weekend to find this all out. Feel a bit relieved to know that. Strange but true.
Anyway the story continues....
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Spoonie, I think you should become a motivational speaker and teach people how to advocate for their own healthcare! You are doing an awesome job-and it's a good thing because it sounds like the cancer folks aren't too supportive. How discouraging, especially given your family history of cancer! I'm glad your PCP can be counted on for caring, advising and making sure you are heard. So the bad news is that you still have many unanswered questions and concerns and the good news is that you are still fighting, researching, questioning, staying hopeful and being a role model for all of us. (Because I know how I react to difficult news. I shut myself off from family and friends and crawl into bed.) I wonder if it is also good news that your PCP is willing to wait three months before checking on the thyroid nodule? If the doc thought it was bad wouldn't it be checked/tested right away?
Know that I am thinking of you and hoping that you will get more answers that will be reassuring. Take Care.
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Hey Spoonie - it just can't be simple for you. I am sorry that so many of your medical people are stupid. I think they should all take a course in "active listening" it certainly would make life easier. Maybe you should run a course for the medical people and teach them how to listen. I have some two by four wood (I always tell my hubby that I have to smack him with a two by four to get him to listen). Happy to send you some for you to use on your doctors. I have given cancer the weekend off, in fact I am taking Monday off rads so I can spend some "non sick time" with my family. Playing hooky. Give your problems the weekend off and try to enjoy. Hugs
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Thanks ladies. I wish I had enough spoons to be a motivational speaker or to speak to drs in general in a large setting (preferably with some of those handy 2 x 4s Giddyup!) as I would think that would be so helpful to the patient community at large. It's definitely needed.
It definitely gets exhausting and my parents often ask me, "How do you keep doing it when you literally have nothing in the tank?". My only answer is "What other choice do I have.". It's true though. If I don't, then I have to settle for what they give me and I don't take settling well. LOL.
GiddyUpGirl - sure hope you are enjoying your hooky time with the family this weekend and Monday! Good for you for making some extra quality time and memories to cherish for years to come. I think that's one thing that life with chronic illness and cancer has taught me: make the most of every moment and every opportunity you have the energy to do so.
After this week I've learned also, that though my SO is a EXCELLENT surgeon and friendly and makes you feel heard, she is a SURGEON and unfortunately her follow through is not what I need as a patient. In the future, I will be taking surgery ONLY issues to her. I can live with that.
So my story continues in that between Monday and today I have now officially lost 7 pounds. 2 more pounds came off in the past 24 hours. I'm worried folks. Guess we will see what the next week brings, but I am sure hopeful that my MO will have a plan for me that includes a biopsy of my lymph nodes and a sooner follow-up of my thyroid nodule. And LPLibraryGirl, I guess I don't have many thoughts on the "current" plan that was laid out by imaging people that do not know me or my hx, or would even put much stock in one from my PCP, I will go with what my MO says when she gets back to me on Monday.
Waiting sucks.
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So Ive lost another 2 pounds since Friday.
Monday cannot come soon enough .
I am really worried.
Something is all kinds of wrong.
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Gently, with love--stay off the scale today and tomorrow morning. You've done what you can, you see your MO then. To weigh yourself now is torture.
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Thank you....yes you are right. No scales. MO can weigh me next. I promise.
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Spoonie - I'm back on the boards and was going to wait to post to this thread until I could really respond to everything, but Domino and Tucker are pawing at me telling me that you could use some pics of them right now so here they are!
Domino empathizing and saying it's OK to relax like this:
Tucker showing it’s OK if we all need a lift sometimes:
Everyone else - after returning from a much needed trip to Italy, I was slammed with work and then my mom was in the hospital for 10 days with pneumonia where they then got too much fluid in her lungs during emergency and she was released oxygen dependent. I am now an expert on these oxygen machines and portable tanks. I've been helping my dad care for her while still balancing a full workload. Luckily she is on the road to recovery now and even weaning off the oxygen. She is a warrior and a fighter and her attitude is great, what helped get me through this bc and I think what's helping her recover. She just decided she would not be oxygen dependent as a permanent thing even though the docs were all non committal, and now she is impressing all the docs with how well she has recovered. Mind over matter!
Anyways I will post more later when I have time to respond to everything in this thread. Just wanted to send some uplifting pics to Spoonie and let you know we are thinking of you. As my mom says, whatever it is, we will just face it and fight it, one day at a time.
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Spoonie - took a break on my cancer free weekend (except for babying my hot boob) to check in to see how all are doing. Like edj3 said stay away from the scale (they are evil and can make you crazy). Good Luck tomorrow I hope you get lots of good answers. Thinking of you and sending you giant gentle hugs and lots of good thoughts. will check in tomorrow to see how things went.
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