2017 Diagnosed-- A Place To Share "Whats Next"
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Hello everyone. I hope this finds you doing well. I have been following this for some time but haven't been on for a while now. I was waiting to see how my appointment with the oncologist would go today. Unfortunately, though my tumor markers weredown in February six weeks after completing radiation therapy, they are now up and the C15-3 is in the abnormal range. A repeat chest, abdomen, and pelvic CT scan is being ordered, and this time they are adding a CT scan of the brain. Has anyone experienced this, and how concerned should I be? I was told in February that I only had a 4% chance of reoccurrence and I was cancer free. My oncologist doesn't want to say anything more until she gets results. I may have to wait up to a month for the scans
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Oh Nancy I am so sorry. I have no experience to share, except for the general observation that once you are on this crazy train there is test after test! Sounds like odds are low there is anything to worry about but I am sending you good vibes, thoughts and prayers nevertheless.
My own saga is that after my six-month mammogram my surgeon and radiologist thought it was prudent to schedule an MRI. Fine, I say, let's do it. Then I developed ringing in the ears (tinnitus) got sidetracked by that, read that tamoxifen could make it worse, went to see an ENT doctor today who says -- you guessed it -- let's schedule an MRI to rule out a tumor in your inner ear. Odds are low, blah, blah, blah. Of course, I say, I'm already looking for a good day to take off for an MRI of my BOOBS, why not throw in an EAR MRI while I'm there! Geez.
RoamingStar, sounds like you are on a good path and cheers to you! I'm so glad you and others are continuing to update us.
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Georgia, thanks so much for your support. I am shocked at how upset I am about this; who knows how long it will take to have the scans done, and then to have treatment if it is needed. Last year, I got little support from family and friends, and my support has been and will continue to be in these chat forums. Most information about TNBC is so old, and I do wonder why the oncologist is ordering more scans, but I do think it is a point in my favour, as our local hospital would not agree that it was necessary. However, I just have to remember one day, one step at a time, and what happens will happen, and I am sure by tomorrow I will be looking at the possibility of good results over bad. I do hope that things will go well for you; I guess it is a lifetime fear that we will never get rid of.
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Roaming_Star— I am way less fatigued as I get back to a work day work week. Slowly feeling like my normal “working” life is returning. Meetings followed by more meetings and production issues to deal with. Gives me a break from wondering if a new pain is something to worry about. Maybe this is the path to my new normal??
I do have a question about your new prosthesis, if you don’t mind?? I find when I wear mine, it is pretty comfortable and helps me feel like I blend in the people around me instead of standing out as a sick person. BUT when I take my bra off, my mastectomy skin is soooo tender and sore. I asked my MO about that. She said just keep wearing the prosthesis and over time the pain will lessen. Do you ever feel discomfort after taking off your bra??? (Hope you don’t mind such a TMI question)
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53Nancy—- the odds are with you that all is well BUT that is not easy to get your mind to accept while waiting for tests and results. And by you, I mean all of us. This seems to be the elephant in the room that is not discussed in all the pink October kind of public service announcements. I have had 2 biopsies of mammogram scar tissue already (fat necrosis) and have a 3rd fat necrosis lump also along the mastectomy scar. I have had abdominal CT scan due to pain after hysterectomy in February (muscle tear, not cancer) , had nodes removed on left and right side with hysterectomy and a wash of the area to makes sure no cancer cells were floating around plus a visual by surgeon of the pelvic region during hysterectomy to make sure no mets were visible. Feels like all my doctors are looking for progression but telling me I am cancer free
This part of life after cancer treatment is hard. It sucks.
My MO doesn’t check tumor markers, just regular blood tests so I haven’t walked in your exact shoes yet but please know you will be in my prayers and I am pulling for you.
Keep us posted. We all wish the best results for your scans. And, if there is room, we will all be in our pocket for your tests. We are here with uou
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Georgia1- two MRIs. Argggg. Sending you hugs and as I wrote to 53Nancy, leave room in your pocket for me.. and all of us.
I have a full blood test in a couple of weeks to see how my body is holding up on the daily pills from my clinical trial. Hoping for regular numbers. Not as tough a test as MRIs. Just trying to say I think we all continue to have tests and worries. And it SUCKS!!!
Hoping you get nothing but good news!!
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Castigame—. Hope your ultrasound went well today.
My next big thing is my colonoscopy which is yet to be scheduled but I do have an appointment to see the doctor to get scheduled so assume it will be in May. Seems kinda like why not have a doctor looking up my butt hole, already had invasive surgery in my whoha and had a breast removed. Nothing like having all those “personal” spaces visited by lots of strangers. Geesh.
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I'd love to see a set of data with the average number of mammograms, U/S's, CT's, PET Scans, MRI'Biopsies,Lab Tests, etc., Men & Women with Breast Cancer average in the first year or so after initial diagnosis. Then I'd also like to know the average number of Specialists we see over that same time span. I was initially diagnosed with BC 14 months ago. In the last six weeks alone, I've seen my GP, (result-u/s of carotid arteries & a CT of brain due to severe 😵 dizziness) A visit to my Gynogologist because Tamoxifen "AKA-Big T"can cause Endometrial Cancer (result: TVU/S-outcome ovarian cysts to be monitored) A trip to my Optamologist because my vision is getting worse & Big T can cause Eye issues. (result-stronger glasses & additional visits) Next week I see the PA at my BS's office for her to review the most recent Mammogram that showed "something" that is "Probably B9" & the following week I see my dermatologist for my 6 month check for skin cancer. Is it any wonder that we have anxiety?
For those of you on the 3W plan with me (wait, watch, worry) here is my plan to make life happier: Burn all miserAble bras with your yard leaves. Collect all the colorful pictures from your scans and create a coffee table book titled "Guess the view"! (Personally, I think my colonoscopy pics and eyeball pics are award winning.) Collect all your empty creams, lotions, bottles etc that didn't help with SE's and build an artistic sculpture entitled something like "Ode to Relief".
Lastly... I'm putting a note of support in each of your pockets as you face the dragons 🐉 of our world.
PS- If any of you have any eccentric crazy thoughts to make our BC world more amusing I'd love to have you share...
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ThreeC— well stated. I have also been to dermatologist during chemo as my arms were covered in red areas which doc believed was Taxol killing precancerous spots on my skin. I now go see her twice a year to look for more pre or cancer spots. Yes, my list of doctors is continuously growing now. In March 2017, I had one doctor and his PA
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ThreeC—. As I was getting ready for work today, I picked up my morning pills and realized here is another area of my life that is significantly different from pre diagnosis. I took only pain pills for arthritis flair ups.... no prescription meds.
Now I have morning pills, lunch pills, dinner pills, and bedtime pills. Geesh.
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DodgersGirl, you have been through so much in a short time- Thank you SO much for your encouragement and I keep you all in my heart and pray that your journies will get better. I slept better than I thought I would and will take time today to find my peace. The scans should give a better picture. I just need to remind myself that it is just one step, one day at a time for all of us. You all have been an encouragement to me and I hope I can be the same to you.❤️
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DodgersGirl, Ha- I have the same regimen. On a girlie note: I found a clutch with daily pill containers at a local outlet. It has four sections in each container. I broke the bank and bought 4 clutches. Now I can set up my pills for a month, go places and not carry a suitcase of bottles and if the container is missing pills... I remembered to take them:-)
Happy 😊 note: those colorful, cute little pills contain zero fat or calories. (If that is not true, I don't want to know)
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ThreeC - OMG you made me laugh with all your ideas on what to do with scans and containers for SE's!!!! Oh I am so with you all on the morning, lunch, dinner, and bedtime pill poping!!! ThreeC it would be great if you took a pic of the clutch with the pill compartments in it! I definitely need that!
53nancy - my heart goes out to you knowing how much worry and fear you must be holding waiting for more tests and results. I have read that for the C15-3 test markers that they are just that. They are not a reliable indicator for the return of cancer. When two or more abnormal results that are consistent for the C15-3 test then they will look at other indicators too. It seems you have a proactive health team who are ready to look further for re occurrence sooner rather than later. It seems to be the opposite here in British Columbia. I get no blood work taken for anything. Really, I am debating on crossing the border to have blood work done privately in the States. From all the studies I have read the testing really does not make a change in outcome in terms of survival time. So I can understand why the doctors here don't want to put us through unnecessary worry and stress. On the other hand living with the unknown dragon lurking inside me and trying to pretend that I don't want to catch that bugger as quick as I can is a different story. I guess that is why I find so much comfort here is that there are all of you dealing with these real battles on a daily basis as well. At least I know I am not alone in this "upside down world" and I learn so much from the strength that it takes to share your experiences, fears, and resiliency.
DodgersGirl - I am glad that you are having more energy. It is a good feeling to have bits and pieces of normalacy again:-) Regarding my prosthesis - no worries on asking:-) I am still working with a PT and she has really helped me about when to get the prosthetic and how to deal with the sensitivity and pain. She has recommended that I massage the mastectomy area daily with my fingers so that I get used the sensations. Then she recommended that I message the area with a wash cloth again to start to desensitize the area. So I was doing that before I got fitted. I don't feel any pain really accept where my bra sits on my rib cage. But the lady who fitted me did not recommend an adhesive prosthetic until at least a year after the mastectomy for the pain and sensitivity reasons. I am not sure if you are using an adhesive?
Unfortunately now I am starting to get lymphedema - uggghhh. I worked so hard at trying to do my exercises to avoid this complication and now it is one more thing I got to work on daily.... The new normal....
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ThreeC, I would like to see a picture of that clutch, too. Sounds like something I need.
Roaming_Star, that was the clearest, simplest information I have seen through looking on line. I am more upbeat today, simply because I believe and have proved in the past, that no matter what the experience is, some good will surely come out of it. And I forgot to mention that I had my mammogram last Wednesday, and it came back totally negative for cancer. It is hard to believe that cancer could progress so rapidly from February 24 when I was told I was "cancer free", so I will just wait for the scans to be donep and I get results. If there is matastases, we will deal with if and when necessary. My husband asked me this morning if I regret refusing chemo, and I am still convinced it was the right choice. We left the door open to consider it, mostly because it more or less guarantees that there will continue to be follow up from the Medical Oncologist. Hope your healing journey goes well.
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Roaming_Star— thank you for the reply! I had PT after surgery to clear away cording and my therapist said to massage that area daily, too. Oh, and so did my MO. But guess what I seldom remember to do?? Yep. Massage the scar. It’s not like something you can do in public!! And when I head to head all I think about us remembering to take my AI and hoping I fall fast asleep.
My prosthesis has no adhesive, it just sits in the pocket of the bra. It’s comfy to wear. Guess that mastectomy side doesn’t like the band of the bra running across it. It doesn’t hurt while wearing it but is tender once bra is removed
So sorry to read about lymphodema. My RO said swimming is one of the best things to do regarding lymph node draining. Do you have access to water??
Regarding blood tests, my cancer center doesn’t test tumor markers as they don’t feel it’s reliable for everyone. I was told reg blood tests and listening to how I feel will be sufficient. I don’t agree but don’t really have another option. That’s a side benefit of being part of the SWOG S-1207 clinical Trial .... I am monitored more closely for the next year with more request blood tests and a call from the clinical trial RN weekly. Makes me feel safer even though rationally I know better.
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I hear you DodgersGirl - a little reassurance once your life has been hit by cancer is such a normal desire in regards to feeling safe and learning how to trust your body again. I think this is one of my key things - I feel like my body let me down and it is now like how do I trust my body again knowing that this dragon makes my body work against me?
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I haven't been posting much lately. I do check in at least once a week to see how everyone is doing. I'm really trying to forget about this whole BC. Trying to get on with life. It's difficult. I see the scars every morning to remind me. Some days, I look in the mirror and wonder will it come back and when. Then there's the muscle and joint pain from the Letrozol.
I hear your pain and wish that we didn't have to go through all this.
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OK- I'll try to post a pic of the pill clutches! These are made by Buxston.
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ThreeC, thanks for posting the photo;it looks great.
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ThreeC I litrally LOL Those amazing pills have ZERO fat orcalories! I love it! Thanks for the giggle.
Those clutches are great. Where did you find them?
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So classy! I LOOOOVE it!
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TaRenee- I live in Fl & we have a store called Bealls Outlet. You never know what they have in stock so I find it a fun place to walk around. I have since seen some similar clutch-type pill containers on Amazon.
As to the pills- I don't care if i'm fat.... if I have to take 20/day, the very least they could do was dip them in dark chocolate!
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ThreeC—. Ahhhh. Chocolate covered Anastrozole... now you’re talking
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That sounds like 20 yummy drops:-)
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I haven't been on in awhile. I read the posts. My last day
with students is June 1st. I love the pill clutch and I also have been taking ibuprofen every day. I am struggling now with my second AI, letrozole. I feel like I keep having more and more appointments too. My summer break looks like a trip to the gyno, dermatologist, MO, B.S. and a colonoscopy. I have my exchange surgery on July 11th. I am on a 3 week break from letrozole and then try a new one. I did get my walking boot off and now onto physical therapy. I am hopefulthese appointments will decrease over time. My RO said I didn't need to come back unless I had a need. Happy about that. My MO told me today that it will probably take till September to feel back to my old self.0 -
Annabel- I'm impressed! I'm a retired teacher/ESE Specialist. I have no idea how you could be teaching & on Letrozole. I had so many painful SE's from it and I was already retired. I'm on Tamoxifen now, with a few less SE's. Hope your summer goes well.
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I’m so jealous! My last day with students is June 15) I think). My kids have their one act show tomorrow evening. I got observed today (thank goodness he happened to come in on a good class!). My major productions are all wrapping up and we are doing class projects now. I found a great cosplay lesson that I’m doing with my 7th graders. They are loving it. But I am exhausted
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So I have been on letrozole for about 7 weeks now. I had my base line bone density scan done (don't know the results yet) and my cholesterol levels checked. My cholesterol levels are off the chart! They read as follows:
- Cholesterol 5.44
- LDL 3.62
- HDL 1.51
- CHOL/HDL (risk ratio) 3.6
- Non HDL 3.93
- Triglycerides .68
At least my triglycerides are in the normal range. I have already stopped consuming alcohol last year, I eat a mediterranean diet, I've already lost 30 lbs, and exercise regularly. I fear that my MO will have to take me off letrozole b/c of the high cholesterol. I really don't want to go on tamoxifen b/c of the depression side effect as I already deal with major depression. Anyone else facing these decisions? Any insight would be helpful:-)0 -
53nancy— checking in to see how you are doing?? Are your scan results back?? Continuing to keep you in thoughts and prayers.
My next blood work test is in 2 weeks
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taRenee we go back to school at the beginning of August and this year teachers report August 6. I would love a June 15 end of year if we didn't have to start till the end of August. Early August makes summer seem long.
Yes I am exhausted too. I have been off letrozole since Wednesday and I am feeling pre cancer good. I have noticed that my heart rate has gone down. It was always borderline high on letrozole. I can't take Tamoxifen so I have a new one to start on May 25. It starts with an E. Worries that I can’t take this one and then what do I do.
I hope everyone is well and scans are good.
* edited to mean that summer is short. Summer is never long enough.
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