Diagnosed/treated 2018 -- Sharing our "what's next"
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Hi all,
Veeder, Flowergal, Star,Beaverntx, and anyone else i’ve neglected to refer to by name:
Spring is finally here in the Midwest. Got a much-delayed start in my gardening projects, also thanks to some needed dry days. Oh well-it could be worse.
I trust everyone is doing well with their health. Saw my RO the other day (a lovely, very caring physician) and we recalled my simulation and start of radiation one year ago. Radiation went well for me-no fatigue and no skin destruction until the very end, but quickly healed thanks to the skill of my RO.
Biggest challenge for me is the lack of availability of Teva AI. I kept moving my prescription from pharmacy to pharmacy, until I came up short this refill. Only received a few of my expected 90 dayrefill. Waiting for my MO to decide if I should shift to Accord (only generic I can find), brand name Arimidex, or one of the others. Experienced no side effects with the Teva, so very sorry it is not available. What are you ladies using? Side effects?
I look forward to hearing your updates. Strength and continued good health to all of you awesome ladies.
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Hi, Josie, good to hear from you.
I'm "between" doctor's visits -- next mammogram scheduled for late July, see BS early August. So far, so good. Radiologist keeps reassuring me that all they see are normal post surgical changes as I express concern about the changing shape of the lump in my breast, it was almost like a tube that was moveable, now is more smooth and firm so we'll see what he says in July. Initially was identified as a seroma..
Re anti hormonals, I'm taking Tamoxifen and have had pills from several manufacturers without noticing much difference in side effects. SE s have been tolerable even if not enjoyable. Two major bothers are difficulty in losing weight, especially when I've lost 75% of what I wanted to lose and have plateaued, and the thinning of my already thin hair. As I said, tolerable.
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I'm on generic anastrozole and don't feel like any of my SEs are related to the fillers (i.e., I'm sure they'd be pretty much the same regardless of brand). I finally finished Herceptin several weeks ago. Won't see my MO until November (hooray!) and won't see my RO until next spring (double hooray!). The only niggling little BC-related thing I have left is I'll meet with my treatment center's genetic counselor tomorrow to begin that process.
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HI all,
I take the Accord anastrazole and I guess it is working.I don't have SE except for a little more joint pain at times but that could be age !
I see the Mo in july and get my 6 month lab work. Then the surgeon in August for mammogram. I stay busy with gardening and our new dog who keeps us laughing!
Hope you all are doing OK.
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Hi everyone
I haven't posted lately, partly because I was doing very well (but I do check in from time to time to see how you ladies are doing!). I'm down to one oncologist, who I don't see again until September. I am on Letrozole and I have joint/bone pain, worst in my fingers, but tolerable and not continuous, and I find heat helps. It's worst in the mornings but then I wrap my hands around a hot cup of coffee and pretty soon they're a lot better.
I have a new challenge though. I was diagnosed recently with melanoma. Here we go again. I am hopeful though that surgery will be all I need. I'm currently waiting for a date for surgery, for which I will travel 6 hours in order to get the best kind of surgery, with the smallest amount excised (it's on my face).
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Hello to all, I see a lot of "familiar faces". As how am I doing... I'm trying to keep up with a bit of normality in my life. I'm taking tamoxifen and every month I have an ovarian suppression injection. I get nervous with every pain or weird feeling and especially before my tests, which I have every 3 months....My psychology is like I'm bipolar (maybe I am). Sometimes I'm happy and super active and there are other times that I dont move from the couch. Maybe the thing that I'm still half flat makes a difference to my psychology...
Here in Athens, Greece, the summer is here so I'm trying to take a little more outside. I'm very happy to see that most of you are doing well...:)
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Kathy--I know a *lot* of women who've had the Mohs surgery with really good results. And I can tell you that you'll think it's big and noticeable while you're healing but really to others the probably won't even pick up on it.
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KathyM7, I had a large MOHS surgery on my face in 2016, incision from the bridge of my nose to just to the left of the corner of my mouth. The derm surgeon was so skillful that it was barely noticeable a few weeks later. There are just a few spots where I dab a bit of cover stick, but I'm a self-conscious kind of person. I didn't have melanoma, but a very messy basal cell that had gone deep and wide.
Hi to everyone else! To catch up: PET scan in early April lit up in kidney bed, so I had to have a biopsy. All clear, just scar tissue on dangling adrenal gland as it finds a new home. Whew. But I think a nerve got nicked because my lower left back now hates me. Poo. Had one-year mammogram, all clear! Next week: intro visit to cardiothoracic surgeon because that cursed CT scan that found the kidney cancer also showed an aortic aneurysm. So this year may also suck. Oh, I stopped Tamoxifen because I was developing a severe Jeckyll and Hyde disorder. I've been off a month with no improvement except to hot flashes, but apparently I've turned into a raving screamer for no reason. Ugh. If you need someone in your life bellowed at, send 'em my way; I erupt like Old Faithful on a regular schedule.
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IngerP and AliceBastable: Thanks for the encouragement about the mohs surgery - I will refer to it in the early days when I'm sure it will be pretty nasty looking. I'll mostly just be very glad to get RID of the cancer. I don't have a date yet.
NoteRed: I think I feel a similar sort of bipolar psychology going on - sometimes great, positive, active; next thing I'm low-energy, moping, scared. Every little twinge gets me going. And then I feel like a fraud because my cancers are early stage, but then remind myself "hey it's frickin cancer no matter what the stage or type, you're entitled to feeling crappy about it". What a crazy ride.
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KathyM7 sorry to hear about your melanoma diagnosis. When I met with the genetic counselor, she told me that women with BC are at much higher risk to get colon cancer or melanoma. My MO directed me to get a colonoscopy and a full skin exam by a dermatologist within six months of my mastectomy. You would think that we should only have to battle one cancer.
And to you and NoteRed, I am with you both on the bipolar psychology. Some days up some days down and get ashamed of these feelings when I interact with someone that is dealing with more. But we are all human after all and this is a scary ride.
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Hi, all. Just back from 18 month post surgery follow up mammogram. The good/ bad news is that the lumpiness and soreness in the operated breast are " normal. " Will see my BS in a couple of weeks and see if she has any suggestions for the soreness other than the OTC pain relievers I am already taking. Ironic to feel so many lumps now when the tumor was not palpable!
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HI Beaverrn,
Glad to hear you are doing OK. I also have some lumpiness and breast soreness but assumed it was from the lymphedema but may be it is from surgery. I have mt checkup in August.
I wonder how the rest of the ladies are who have been with us since the beginning .I hope everyone is doing OK and getting on with life. I just got back from an Alaskan cruise which was amazing and awesome! It was our 50th anniversary gift to ourselves.
Have a good summer and stay cool and healthy!.
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Beaver I'm not sure the hardness at the surgery site ever goes away, although I believe consistent massage can help.
I was thrilled to finish Herceptin May 17th--that was a long year. I celebrated by taking myself away for the weekend and then going to Costa Rica for a week with my family. The AI has been going okay for me--no terrible SEs but I do find myself wondering how different I'd feel if I weren't taking it. My hair is bumming me out. It was so super curly when it came back I kept buzzing it off. It started to straighten out *a little* in March so that was the last time I cut it. I made an appointment for about a month ago--I was so excited to get it lightened up and maybe shape it a bit. I was told it wasn't long enough yet for foil and I wouldn't have been happy with an all-over color so they sent me home. I made another appt for late August--they promise me it'll be long enough by then. Still--it looks nothing like my old hair. I feel pretty much like a poodle--it's about 2.5-3" long, so not enough length/weight to fall over. I keep thinking about things I have coming up in the fall and wondering how long my hair will be by then. Hubs thinks it'll take two years to get back to normal. <sigh>
Other than that yes--it has been a hot one lately!! These really are the dog days. Hope everyone is doing okay and staying cool!!
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Hi Beaverntx, Flowergal, Ingerp,, and all of my dear friends here,
So nice to see updates and know that you are doing well! Also glad to see that everyone is finding things to enjoy-after all, that is our reward for what we experienced.
Not a whole lot to report, which in itself is a good thing. Still seeing my cancer team, but much less frequently. My MO is my most frequent interaction, but my entire team is so great I am glad to be in touch with them.
Despite life’s challenges, I continue my daily exercise as much as possible. If I have to miss my “usual”, I try to double up and do additional during the week
Happy as well that Teva resumed production of Anastrozole and I didn’t have to face choosing another manufacturer. (Had notexperienced any SE with Teva, so was fearful of shifting my source) Grateful every day for that tiny little pill.
Will never forget the kindness and comraderie I experienced from all of you. Wishing everyone continued goodhealth and a great summer!
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Hi to everyone, and I hope none of you are suffering in the heat wave - it just ended here in the Midwest, so there is hope for other places.
I saw the cardiothoracic surgeon in June, and I'm in a "wait & watch" phase. I'll get another CT scan next year to see if it's gotten larger. Speaking of CT scans, I'll have another one in the fall to check on the kidney bed. The urologist always asks the MO to schedule scans, and she seems to be getting fed up with it since for breast cancer, she doesn't do scans unless symptoms or bloodwork warrants it. I hope they get it straightened out who schedules what, because I'm afraid my insurance will refuse to cover the CT if the wrong doctor orders it. I hate being in the middle.
One year since my lumpectomy, got the mammogram and follow-up appointments out of the way - all clear! I have NO appointments until my next MO appointment in October. I have no idea what to do with myself; I haven't gone more than a month without some sort of medical appointment in over a year.
Wishing a good rest of the summer to the Class of '18!
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Hello.
My wife was recently diagnosed (May 2019). She is 43 years old. We have two young daughters, age 6 and 4. We live in Toronto. It is Stage 2- lymph positive. She will have surgery (lumpectomy) in late August or September, and then chemotherapy, and then radiation. Also of concern is that 3 cm nodules have been detected in her thyroid, and she recently had a biopsy. Her mother died of thyroid cancer. Of course, we are terrified.
Any other dads/husbands out there, or anybody know where I might find them?
I would be interested to hear their insights or comments about what I will be going through over the next year.
Thanks in advance to all who reply.
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Hello. This is vidal1993 again. If anyone out there would like to share with me their thoughts on the following- "What I wish my husband knew about my breast cancer", I would be thrilled to hear it.
Thank you.
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Alice--sorry about your ongoing situation but hooray for a BC-all-clear and relatively empty medical appointment calendar!! I have some misbehaving cells on my cervix so will have a LEEP procedure in a few weeks and am about to re-start PT for a hip issue I've been having (I feel SO old!!), but I don't have a BC-related appt until November, when I'll check in with my MO. It does feel weird (but good, right?).
vidal--you might look for a thread more specific to your wife's diagnosis. There are various treatment ones by month ("Starting Chemo ___", or "Starting Radiation ____"), as well as ones for specific diagnoses (e.g., "Triple Positive") and treatments (e.g., "Weekly Taxol"). You can also search on the word "husband." I think you'll find more relevant support in those places.
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Hello Vidal,
The best thing my husband did for me was just being there , hugging me when i was upset, coming to the initial Dr .appointments with me and taking notes for me.
I did a lot of online research and found the Susan B Keohmen ( not sure I spelled it right) site as well as this site were very helpful.There are lots of articles about every aspect of BC as well as the forums like this one. I think you just need to be an active advocate for you both . For me ,the waiting was the worst and once I knew what I faced, I was able to cope a lot better. Sending positive thoughts your way.
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flowergal, you were close-- it is Komen. I keep breastcancer.org and the Komen site bookmarked. Still refer to them a year and a half after diagnosis.
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LOL Not close at all !! but i hope Vidal and wife find the site helpful. I learned early on I had to be my own advocate and ask lots of questions so I flet like i had some control ( which is an illusion, but helped me cope! )
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vidal, you may also want to use the Search box to the left in the blue nav bar and type in "my wife", and then you will see the posts that all match that, so other husbands/partners.
Hang in there!
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Thanks to Moderators, Ingerp, Beaverntx and Flowergal for their replies and guidance. I will follow your recommendations. Thank you also for sending the positive vibes our way.
Incidentally, my wife has Right-sided breast cancer, 2 lesions in the right breast, stage IIA (T1, N1 MO) with a single right axillary lymph node involved, ER/PR 100%, HER-2 negative by IHC, intermediate-high grade.
Best wishes to you.
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Vidal, my husband was and still is the source of unconditional support and love for me. He was with me every step of the way: coming to the appointments and surgeries, picking me up after chemo sessions, putting up with my mood swings and crying episodes, etc. When I started losing my hair, he was the one who shaved it off and then told me that I am even more beautiful without it (lie, of course 😋). He was there for me when I needed him the most, and I will never forget it.
Tell your wife you love her often, touch her to show your affection, don’t be embarrassed to go out with her in public, and make sure it comes from your heart. For all I know, his support made a difference between life and death for me
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IngerP, best of luck with the cervix issue. And the hip. Our bodies are like Jenga after a certain age, you screw with one part and the whole damn thing tries to collapse.
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Thanks, Alice. It’s all fine I guess. In the meantime, my step-FIL had a heart attack yesterday (he’s only nine years older than I am, although this is his second) and is looking at 50/50 odds. I guess I’m counting my blessings.
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Thanks InnaB2018, your comments and suggestions are quite helpful. My wife is upset to know that she will be losing her hair, so I told her yesterday she would look even better and she really appreciated it.
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Hi,
Just popping in to say "hi" and also to share that I'm having my 2nd MRI since surgery on Monday. I'm really nervous about it since the MRI last time 9 months ago I had a bad experience with the machine shaking and my arms actually got bruised from being bounced around in there. I've had lots of MRI's to other body parts, no problem. I did follow up with the MRI management and they said certain pictures have to be taken after surgery to see the area which can cause the machine to shake and also the noise to increase. UGH.
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Hi Veeder,
So good to hear from you! I hope all goes well with the MRI.Is that for follow up from the hysterectomy or have you had more surgery?
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Hi Veeder,
Sheesh...what the heck was going on with that MRI machine? That would have scared so many people to the point that they would never have another one. (I personally have never had an MRI, but certainly your post will make a lot of us ask questions if/when we need one) I had the same question posed by Flowergal about your surgery, so please share what you are comfortable sharing. You are a trouper
Wishing you good health and success with this, and enjoy the remainder of summer!
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