2017 Diagnosed-- A Place To Share "Whats Next"
Comments
-
Hi Georgia1,
Glad things are well in the breast cancer world, but so sorry to here that the OBGYN world is not being kind to you. That sucks it would be so nice to get a break instead of one thing falling apart and then other parts of your body wanting to mess up too.
Wishing you all the best with everything health wise. I hope your check-up goes well next week. So what do you think you want to do on your surgery anniversary? Your idea about brownies sound like a yummy one.
Sending you good healthy thoughts and Hugs,
Sara
0 -
Got the call today. I have been accepted into the SWOG-S1207 clinical trial with an expected start date on mid next week.
Will either take a placebo or Everolimus for 54 weeks.
0 -
Good news dodgersgirl! Praying for great results and minimal side effects.
0 -
Legomaster225–. Thanks! Sure hoping for minimal SE’s, too!! At least if things get bad, I have the right to stop the trial.
0 -
I am just torn by all the hair compliments now. More than a few people tell me that I need to keep my hair this way. And it IS cute. I can't deny that. But I have had long hair my entire life, and I really miss being able to put it up and play with it. I don't know that I will let it get as long as it was. But this still feels alien.
So I appreciate the ability to look cute now. And maybe some people will think it is still cute when it reaches my shoulders and I can style it a little. If it gets that far, I may keep it there.
All I know is that I am not "whole" yet, regardless of what people tell me about my looks!
0 -
Started my clinical trial this morning.... 2 mystery pills each morning for 54 weeks. Waiting for SE or not so I can guess if I will be on chemo for 54 weeks or merely taking a placebo
0 -
good luck dodgers girl !
0 -
I went for my end of rads mammogram the first week in March. Left feeling excited when the nurse came out and said I was free to leave that everything looked fine. About two weeks later I got a letter in the mail that upset me to say the least. It stated-"The results of your breast imaging showed an area that we believe is probably benign (not Cancer). However, you should have follow up imaging in 6months to confirm this area has not changed. This area could be related to a biopsy, surgery, injury or normal breast changes." Am I overly sensitive or is this letter poorly written? I can't believe there is so little information or that I have to wait months tofind anything out. I had my first surgery for what the thought was a benign papilloma only to wake up to the news It wasn't benign. It was Cancer and I would need one or two more surgeries because they couldn't get clean margins. I can't understand why they didn't have me come in for an ultrasound or at least call and give me more info. Any thoughts?
0 -
I am very happy to have had the bone scan. Now I know all my aches and pains are most likely the Femera. In a walking boot now due to my Achilles being inflamed. I will wear the boot with a smile.
Dodgergirl I am thinking of you with this trial. Keep us posted. It is a good trial.
I never had chemo curl, it came back as straight as ever. It was hard to go without wigs and hats at first. My second graders are still asking what happened. I was very happy to not have anything on my head. I would check the top of my head when driving to school because it felt like I was forgetting something. Go for it0 -
My hair is finally long enough that I can feel it on my head, as if it were a scarf or a hat or a loose pony tail or something. I find myself reflexively trying to brush it off sometimes. It is amazing to me how weird hair feels after only being bald for six months.
0 -
ThreeC- I don’t have any experience with what you are going thru.... but I have had issues with a seemingly ineffective communications from MOs office. I fully get how frustrating it must be not to have your questions answered so you can get a better idea as to what’s going on.
Question— do you have a patient portal where you could read the notes yourself from your latest results? Maybe something in there could lead you down a path with answers??
Hoping you get good news
0 -
Annbee— so glad to read your intermittent pains aren’t more sinister. Hope the walking boot is short lived. Ouch.
0 -
Rhyfelwr—. Hair!! Now that is warming up, I am enjoying riding in a car with windows down and my waving in the breeze!! Feels so neat. I had long hair before cancer and could never tolerate my hair being blown around from a breeze... now, it just feels cool and it doesn’t mess up my hair.
0 -
Hi Ladies,
Just an update. Had a mamo on non BC side because of a lump. It was my cystic breast tissue giving a scare. But at least not cancer:-)
I have chemo curls too! I ended up getting my first hair cut in a year a couple of weeks ago. I moved to a new city just before diagnosis so I didn't have a regular hair dresser. I found a salon and explained my situation to the woman. She was really nice. Even though I didn't have that much hair I was just tired of the tight curls. She layered it great and gave me a good style. Now I can use some putty and shape it differently if I want. It is growing in great! I also coloured it because I feel like this cancer treatment has aged me. I pretty happy with my new look.
I am probably going to be joining a support group for moving beyond a cancer diagnosis. My depression has been pretty bad and I had to give up my business just before my cancer diagnosis so I really don't have much to focus on now. Any one else having depression or trying to find work?
DodgersGirl - what is the trial reseaching? I would be interested to know as we have similar diagnosis.
0 -
Hi all,
I'll chime in on the hair. Mine continues to come in. It's just starting to be long enough to start to get a wave or curl. Time will tell. I had a slight wave in my hair pre-chemo but definitely no curls. My color is the same. I haven't worn my wig since November. People are asking me if I'll keep it short. I don't know yet.
I just finished up the last of my second round of chemo on the Thursday before Easter. I'm ringing a little bell in my imagination. Hoping that this is truly the last of chemo. Now it's just 13 more infusions of Herceptin and Perjeta and I'll start Tamoxifen in a couple of weeks. I can start to think of exchange surgery after I'm 4 weeks out from chemo. Feels like I'm getting back on track after the curve. Just keep putting one foot in front of the other.
Glad to read most are moving forward and feeling good these days.
0 -
Yes - that is what I keep thinking too - one foot in front of the other. Literally - I am trying to make it a habit to walk every day for an hour - one foot in front of the other....
0 -
Roaming Star, I'd encourage you to find a support group where you are! I am finding that depression has been more of a problem since active treatment finished. When I was in the middle of treatment, there were always people around taking care of me, and I was so focused on getting through the next round of whatever. I kind of miss that zen-like part of the fight. Once that was done, though, I just feel crappy and everyone (including me) expects things to be better. It has been essential for me to have people who are in the same boat, or who have gone before who are able to give me a better sense of perspective and help me rest in the moment and help me heal.
0 -
ThreeC, I am currently in a situation very much like yours. I had surgery, then after radiation had another mammogram and the results were wishy-washy to say the least. It more or less said, well, it might be cancer, it might not, can't say for sure, have another look in 6 months and we'll see what it's doing.
I flipped my pickle. It was explained to me that sometimes what is NOT on a mamm report is just as important as what is. I was told that if someone truly felt the 'thing' in my boob was ominous, a biopsy would have been done, on the spot, no ifs, ands or buts. But because no one charged in and stuck a hollow needle in my boob, the emergency level was not as big as it sounded. The wording was cautious, but not raising the alarm.
Despite having this explained to me I still was not happy with waiting 6 months. My radiation oncologist suggested I wait 4 months (which I did) and have another mamm ( about 2 weeks ago now) and the news is that the 'thing' is still there, but has not changed in the last 15 months or last 3 mammograms. I am now to wait another 6 months and see if things still look stable. While I did not exactly hear the all clear, I also still have not had anyone suggest a biopsy or other scans. So ... I am somewhat relieved, but not quite ready to exhale yet. Are any of us? Ever?
Your mamm might be worded to be cautious and prudent, to keep you in the system and keep you monitored. Due diligence in watching, but no one os sounding the alarm bells yet. If 6 months is too long, ask if you can have another mamm in 4 months instead. Might remove some (not all) mental anguish.
0 -
Runor-Thanks for your reply. I am so appreciative of this site and others like you who jump in to share and make a difficult time easier.
When "The Letter" came, I was truly surprised at the lack of information. Is the area of concern in the breast that my cancer was found, or was it in the breast I had two biopsies on that were supposedly benign?
When I had my first suspicious areas, they did ultrasounds asap, followed by an MRI. The radiologist came in the room and personally shared what they were seeing after each type of scan. So, my mind knows there is watchful waiting going on. But, I like to be an informed patient. I like knowing something vs. knowing little to nothing.
I have an appt. with my MO in about 6 weeks so I'm going to wait it out and ask questions then. I'm hoping to avoid the year-long version of watching though.
Thanks for helping me find my voice of reason. I hope your status remains stable. I really appreciate your kindness in sharing. Having this "unknown thing" lurking around will never be easy, but we can work our way along.
0 -
Thank you Rhyfelwr for your reply. I am looking forward to the, "life after cancer group".
Enjoy the spring flowers everyone:-)
0 -
Hello everyone. Hope April is treating you well.
I returned to work this month after my hysterectomy in Feb. Trying to build up endurance. I am pretty spent when I get off work. Hoping some spring sunshine will be just what I need.
Got the results from my last MO visit in March. Blood work normal range for all categories which is better than before dx!!
No SE from clinical trial that can tell me for sure if I am taking the chemo pill or placebo. Having minor SEs like dry sinuses but they could be from spring allergies that I don’t know I have. So far no rash and no mouth sores. I figure my 6 week blood work should tell the tail
0 -
Dodgergirl, I was just thinking of you. I am glad you don’t have SE other than the dry sinus. Great news on the blood work.
0 -
Annbee- when will this year’s school end for you??
0 -
Hi DogersGirl - hopefully your energy will start to come back like all your blood counts. Your body has been through a lot. You are very strong:-) I am guessing because you are on a trial that your blood counts r being monitored. What is the trail for? I would imagine that if you end up being on a placebo that would suck as then you would not be getting the medicine for further cancer treatment; a bit of a catch 22.
Take care, Roaming
0 -
Roaming_Star— Clinical Trial SWOG-S1207 to see if Everolimus (Afinitor) plus Anastrozole helps ward off recurrence or mets in Stage 2 and Stage 3 patients. My blood work will be done every 6 weeks. You are right about catch 22 as I am either taking chemo each morning or a placebo. Hoping if it’s the placebo, that my testing will help BC survivors in the future. It’s a Phase 3 trial
0 -
DogersGirl - wow that is pretty cool about the trial. I know that the cancer treatment hospital in Toronto is world renowned for their clinical trails. They have something like 700 trials going on. I have been thinking about switching treatment to this hospital. They have way more to offer than the clinic here on Vancouver Island. Thank you for your contribution to research for us :-)
0 -
Hi all,
After my diagnosis in March 2017 I was all set to have mammos every 6months on my right breast ,and yearly on my left. So I had my yearly bilateral mammo and it showed microcalcs in the left breast. Just ugh! This week I had a stereotactic biopsy done and the path result came back as ALH. I am cool with it not being cancer, and even cooler with the recommended treatment being tamoxifen since I am already on it for the treated IDC. I would like to just stay with the 6 month mammos and mris to monitor the ALH, but I read on here about sometimes a surgical biopsy should be done to rule out if there is LCIS that wasn’t captured in the stereotactic.
Is there anyone that started as ALH and just monitored it, or do most go ahead and do the surgical?
Everyone take care,
L0 -
Peachy Kean: yeah, only 13 more herceptin/perjeta! I finally finished my 17th hercepin/perjeta on April 4th.
I wanted to warn you keep your mouth wash going or however you are taking care of your mouth. It took me two bottles of magic mouthwash to get through just the last two cycles because I had so many sores toward the end. They were along both sides of my tongue towards the back, big white painful bumps. I guess that's where one of the larger nerves in your tongue runs so maybe it was some form of nerve damage like what happens with fingers and toes; I don't know. Also I am amazed at the lack of pain in my legs and hip and back now that I'm done (hopefully done for real). I'm not walking like a little old lady anymore. All that pain had to have been from the herceptin/perjeta. Yes, I'm an emotional mess when I think about this past year. Did this past year really happen? Everyone who wrote about the hardest time is when you're done with active treatment was spot on.
This past week I had a chest ct, abdomen ct, mammogram, echo and apparently they were all fine but I don't have the actual reports yet. I am amazed they are clear! because now I developed a supraclavicular thing, which I call swelling and the nurse practitioners called a mass. Which I wanted an biopsy on because I am freaking out but right now I'm just scheduled for just an ultra sound next week, then go from there. It didn't show up on the CT so I don't know what's going on. So more worrying and waiting. Still have my port in and hoping to get that out soon.
Glad everyone is hanging in there.
0 -
dazzlingeagle—. Hope your ultra sound next week is clear. Worrying and waiting just seems like part of life now. And that part SUCKS.
Has your MO given you a timeframe for port removal?? Hope that’s in your near future.
It was good to hear from you and great to see your cat scans, mammo, and echo were all good.
Please keep us posted on your upcoming u/s. Sending prayers and well wishes your direction
0 -
Hi DazzlingEagle - I hear you about you being worried and having to wait yet again for testing. I will be thinking of you this week when you go in for your ultra sound.
This last week was a busy week for moving on after bc! I got fitted for my prosthesis and I love it! It is amazing how a silicon form can make me feel! I have also lost 30 lbs since diagnosis so I figured it was time for some new out fits:-) I feel pretty good for once in a long time! I also got my port out this week!!! And I got my eyes re-examined as chemo did a number on my eye sight. So I have new glasses coming in soon.
Next week I do blood work for cholesterol and triglycerides as well as a bone density scan to see where I am at with letrozol. I am hopeful that the tests will come back normal. I applied for a job in goverment way back in Feb and I was shortlisted at the beginning of this month. I had an assignment to write. I hadn't heard from them so I emailed yesterday. They said they are still grading the written assignment - so at least I am still in the running - talk about waiting though....
DodgersGirl - how is your energy this week after working? I am wondering if you are having less fatigue?
Sending lots of love and light to you all.
0