Why was I stronger DURING treatment than I am now?
Comments
-
Is that actually true about the aromasin?? if that is true, I don't even want to try it. I am having a femara holiday since valentines day, and i am still in so much pain, I can't believe it.. i see my onc may 4, and then see whats up, what I will try next. So far, the tamoxifen was not as awful, but. I have fibroids that never went away six year after menopause, and stated getting worried about that and endometrial cancer. i hate this sh*T.
0 -
Tomboy, its just what one person shared with me about HER EXPERIENCE. However, if you go out to the articles posted on this website, you will find explanations of how the drugs work and the Aromasin does work differently from the other two. Do some research BEFORE you try it. We have to be our own BEST ADVOCATES with this experience. that's for sure.
I had fibroids too, when I was 34, I had a myomectomy to remove them, hoping I might still have a baby. When I was 46, I was in so much pain all the time, I had a hysterectomy. Best damn thing I ever did. Don't know why I put it off so long.
0 -
I am glad the hormone stuff has not been in my array of crap this disease puts us all through. I do not envy you folks with that. Not that the rest of this is fu, I think I am just happy to not have one of the major treatments to complete.
Chloesmom- I made the mistake of having a party after completing chemo. So I completed it June 26th, my party was July 27th, and it felt like after the party everyone kept saying how I had kicked cancer's behind. I felt so alone. I still had my bmx, rads, months of Herceptin infusions, ovary removal and reconstruction to go....but if anyone said anything at all, it was about me being cured. Ugh.
I am at the point this is a little entertaining...but I was pretty stressed earlier this week. I had my ovaries & tubes out at the same time as starting recon. The pathology on my ovary with the tumor came back clean. Yay! Now I can put that out of my mind. So far, no hot flashes...which is weird, because I have been having hot flashes for a year from chemo. Onto the weird.
So, my plastics guy has been practicing for about 35 years. My Bs referred me to him, and I trust her immensely. He seems like a nice person, and has won some reconstruction awards. I like his plan for my treatment. I am doing tissue expander & then silicone implants. We are planning to go as far as possible on fills, but if my rads side will not go bigger than a size B, I am ok with stopping there so i do not have to do more invasive stuff to support the implant.
So my surgery was last Tuesday. I was supposed to follow up with him to schedule a follow up this week. So I call Thursday to schedule & they tell me he no longer works there. The clinic has no contact info for him, and no different surgeon for me to follow up with. My bs is in Puerto Rico right now, and I am sure insurance would pay for me to see her for his surgery.
I put my sleuthing skills to work, and found a different number for him at an old practice he also used to be a part of. They contacted him for me, and told me that he was told he could not contact patients. No one from my medical center contacted me at all. I made an appointment at a different clinic he goes to for Friday. I contacted my clinic and demanded my records by noon today. They of course still had not contacted me, but sent my email demand to my primary...she called me and was quite upset with my lack of treatment plan. So she got my records prepared for me and is trying to get to the bottom of what happened.
My hubby and I have talked about who we should trust...I like all of my docs, but I know my medical center has been treating the docs and surgeons poorly. I do not want to split between my medical center and another, but I want to stay with my plastics guy. I am upset that whatever happened, there was no plan for my care. I am a.little worried insurance might hassle me for the clinic change. What a bunch of crap.
0 -
Smart - WOW! That is total crap to leave you hanging like that! That is the strangest thing...you hear about doctors leaving sometimes, but there is always a plan in place for someone left to take on their patients and they usually send a letter out letting them know what's going on. That is so not cool at all. Glad you are a super sleuth and tracked him down. I wonder if he will share what happened or if he will have to keep quiet. Glad you were able to get in to see him on Friday - here's hoping your insurance cooperates. Maybe you will be able to talk to them ahead of time and see what they say. Good luck with everything!
0 -
Smart, the mess with your PS is unbelievable! Doctors, hospitals, etc. are not allowed to abandoned patients, and that's what this sounds like. I heard of someone else in a similar situation. I'm glad your PCP is looking out for you and hope you get a plan soon. I'm so glad your ovary was benign also. Regarding hot flashes, it took about 3 weeks after my oophorectomy before any serious ones kicked in. I've heard some women wake up in the hospital after the surgery with hot flashes. I guess we should count our blessings no matter how small.
0 -
smart- glad you were able to track him down. I know sometimes when a dr leaves a practice they are not allowed to tell anyone where they are going; not even the people they were working with. It's part of a non-compete clause. It really stinks because it feels like we are being abandoned. I hope your insurance accepts whatever you decide to do.
0 -
I am soooo bummed!! I had a mammo two weeks ago and it was all good- saw plastic surgeon same day all good- After mammo I felt pain in the bad girl and thought it was still tender or something . So I didn't think a lot of it- slept on it the other night and thought wow why am I tender, forgot about it. Last night I did a breast exam and felt a lump, right where the cancer had been removed and fat grafting had been placed. Its actually rounded out above my skin and hurting. I saw it and though WHAT!! and showed my hubby and said What the heck is this!!! So an hour trip to my GP today and he says don't worry to much this weekend, I do not think its cancer I think it could possibly be a hematoma or a cyst and I can not say it didn't come from being squished in the mammo.
Next week I get to drive 2 hours one way to have an ultrasound on Thur and see my Plastic Surgeon on Fri which is his last day as a PS for breasts he is going to do hands. grrr. so anyway he will decide if I should have it drained or if I should have a biopsy done at the cancer center. GRRRRRRR.... I guess the joy of two weeks ago when blood- boobs and bones were all good.. UFFF. 8 dr appointments two weeks ago wasn't enough- back I go!!!!
0 -
ndgrrl, I'm so sorry you've run into this complication. I love it when docs tell us not to worry too much over the weekend. As if. I so hope this is just from getting squished in the mammogram or a cyst or something like your GP said. Having to drive a long way to the appointments must just add to the stress. Hang in there.
0 -
I can so relate to what you said about husbands not being the best to discuss it with. My husband said, a few weeks ago, that I looked like an old, overweight grandmother. What made it worse was that I felt exactly like that. But, it isn't something I would ever say to anyone, with, with or without cancer.
0 -
Nightnurse - smack your husband up side the head for me. Good grief - men!!
0 -
Nightnurse, that's an awful thing for your husband to say! Is he vindictive or just clueless??
0 -
Nightnurse - Maybe he can be your ex-husband someday. What's wrong with men, anyway?
0 -
Sometimes men can be so insensitive. I had internal radiation less than a month after my lumpectomy and hubby was with me through it all. The nearest cancer center is 2 hours away and was happy he was with to drive me around the city. The last day of radiation, I wasn't feeling well to start with- later that night ended up in our local hospital because I was getting dehydrated from puking- anyway- the last day, I had scheduled my next appointments for that week to recheck with my Surgeon and RO but could not get the appointments on the same day. So that meant that 2 hour trip one way twice that week.. Hubby's boss told him take as much time as you need to help her with pay. Hubby told me he didn't want to take me to those 2 appointments that week and was very made I had not made them on the same day.. As if I could help that!! Anyway he told me he wouldn't be driving with me anymore and I best figure out how to get to the cancer center alone. I looked at him and just bawled. I didn't need that at that point in my life. But I learned how to drive in that city and have taken myself to every appointment other than my MRI alone ( I thought I may have to take Ativan). Now when he asks if I need him to take me to appointments I tell him with a look of death that I can handle it alone. MEN!!!!!! GRRRRRRR
0 -
I don't think there is a woman alive who can't relate.
My husband, however, loves to play the hero when I am sick. It's when I'm well that he becomes my adversary.
Maybe your husband felt you were well at that point?
After 45 years of marriage...I just try to let as much as possible go. I haven't been very successful in changing him!
I just wind up making myself sick.
I hope you get back to normal quickly and don't need him for anything!
0 -
Thank you.all for the positive comments. I saw my PS Friday, and it was a good appointment. He told me he got notice at my medical center & walked out two days after my surgery. He was told no contact with patients & that the medical center had followed up with all of us. He found out from his staff that none of us have been taken care of. He had patients show up for surgery last week...no one had called them. I am so glad my stuff went off & that I found him to follow up with and complete my plans...if my insurance covers.
I am happy with my new little A- boobs. Not much there, but it is way better for me than my concave chest. My clothes already look better and do not slide down or fall forward like they did before. I notice I must have been even more self conscious than I thought...My posture is already ten times better (even with the pain).
I am so sorry about the husband comments and behaviors.
Ndgrrl - I am proud of you for driving yourself, but sorry you have to do it. Have you heard anything more about your recent stuff
Nightnurse - I am not sure I could handle your husband's comment. I feel like I look exactly like that right now, and it is hard to look in the mirror...to hear it out loud would really hurt my feelings. That totally sucks. I am sorry that happened.
2tabbies, I hope my flashes don't start at 3 weeks like yours did, but thanks for the info.
0 -
I feel so bad for all of you with insensitive, d**k-head husbands. I guess cancer can make or break a relationship, like the death of a child. So sad. I read those comments and appreciate my DH even more.
0 -
ndgrrl, I am so sorry your husband was such a jerk about driving you to your appointments. As someone who hates driving in an unfamiliar city, I'd have broken down and cried if I'd been in your situation also. Good for you for taking on the challenge and doing what you needed to do, but damn. You shouldn't have had that burden on top of everything else.
Smart, I'm so glad things worked out with your PS. I feel terrible for his other patients who weren't able to track him down. I'd be tempted to report that clinic to the state medical board. It doesn't seem ethical to dismiss a doctor and not provide follow up for his patients. I felt the same as you after I started reconstruction. Even when I just had a slight bulge instead of a concave chest, it was so much better.
Unfortunately, I feel like crap now. I just found out I have osteopenia. My mother suffers terribly with osteoporosis, and I'm afraid I'll end up going down that path. I just want something healthwise to be NORMAL. When the nurse called me with the test results, she said the doctor's advice was to continue taking vitamin D and calcium and have another bone density test in 3 years. Seriously??? I've been taking calcium and vitamin D for years. It's obviously NOT WORKING! But they want me to just keep doing the same thing for another 3 years? I asked for the doctor to call me back so I could ask her some questions, and was told that it was "clinic policy" that I had to come in for an appointment. Well, I'm really short on sick leave, and it pisses me off to have to waste a couple hours of it for something that could be handled over the phone. It's not like she needs to examine me. I guess they think patients have nothing else to do but run to doctor's appointments all the time. I did make the appointment. It's not until the end of May because I have a Friday off then so could avoid using sick leave. I will voice my annoyance at their "clinic policy" when I see her. My PCP communicates with me via messaging on their online portal for heaven's sake. Other docs use email. My old GYN had her cell phone number on the office voice mail so you could get hold of her if you needed to. This "come in for an appointment" business sounds like an excuse to be able to bill my insurance company a couple hundred bucks to me. Yeah, I'm pissed off. Can you tell? :-)
0 -
2Tabbies, you definitely need to ask about getting on weekly Fosamax pills or having one of the yearly IVs like Reclast. You're right to do SOMETHING besides calcium and D.
0 -
I am low-osteopenic and recently started my AI. My MO did not offer anything, not even OTC!
0 -
Just came from counselor. So helpful to talk about the post chemo/ post surgery funk. Feel a lot better realizing it's going to take time to adjust to the huge upheaval. Have been feeling numb. Didn't think it was depression, more shock. It's kind of like when a tornado wipes out your house and you stare at what's left trying to process what to do next and figure out if there's anything you can salvage from what you knew as your life BC.
0 -
Chloesmom - I so relate to your comparison to the tornado upheaval. I find it hard to focus on much of anything. I'm not quite sure of my daily priorities anymore.
0 -
Hi, I haven't written on this thread for awhile but I have been reading. Compared to many others here who are struggling, my problems seem minor. "First world" problems my daughter calls them.
My heart goes out to everyone struggling with BC complications, spouse insensitivity, and other major crises.I had my first eye cataract surgery last week. Anytime I have any procedure now that involves surgery, I am more anxious than I ever was before BC mastectomies. Who knew not wearing sunglasses all the time hastens cataracts? I am only 63. Second eye to follow last week in May.
House goes on market first week in June. Surrounded by boxes to be picked up by moving and storage company, Salvation Army, consignment shop, and junk haul. Soon we will be living with a house and porch painter for 3 weeks.
So much chaos in our small 1 level home is driving me crazy. So many contractors coming in and out. I missed one yesterday because I got a UTI and sinus infection again. Now that my body is bereft of estrogen, the lining of the bladder is thinner and I am getting so many UTIs.
I'm moving to NC week of June 1 with the dog and ancient cat so the house will sell more quickly. My husband is staying here to keep working until the house is sold. In this real estate market who knows how long I'll be alone. He is my rock and I will be less stable alone for a long time. I was so strong during treatment and I feel so vulnerable now.
I am grieving the loss of friends here in Northern VA. Most of all I am grieving being separated from my 8 year old grandson. He is grieving too. We've had him at our home almost every weekend since he was born. We have to move. For financial reasons. We simply can't afford to live here on retirement income.
I have not had time to stay healthy with diet and exercise. I worry because I am triple negative and that and Metformin and supplements is all we have to prevent recurrence. I just want to curl up in a ball but there is hardly any surface in the house to curl up in.
Thanks to anyone who has taken the time to listen to my rant. It was a long one but I needed it to feel less alone.
Hugs, Peggy
0 -
Cloesmom - Don't underestimate the power of the post chemo funk. Just because it's invisible doesn't mean that it's not a giant. I was so mentally wobbly in the months following the end of my treatment, and instead of feeling like I was on top of the world I felt like I was falling apart. In retrospect, I realize now that falling apart was necessary so that I could shed some of my old skin and start rebuilding into the 'new me'. I kind of felt like the tin man from the Wizard of Oz. I had all the necessary parts, but getting everything to work together kept throwing me off balance. It was baby steps for a long time. I was on a constant verge of collapse, and sometimes went beyond 'verging' and into a total meltdown. It's normal, really. Even though you may feel like you are totally alone, and having inappropriate reactions, you're not alone. It's all part of a process that nobody tells you about, until you think you are going crazy. I think that you're rebuilding too, and it's scary and lonely and totally unfair after all we've been through - but I swear - it's temporary - and you'll come out stronger in the end.
PeggySull - I wanted to curl up in a ball after reading your post as well. Moving sucks. And the same goes for surgery, infections, and especially the thought of being away from your friends and little grandson. I'm sorry you have to go through all that. I really am.
I know we all come to this thread because there are little bits of us that are scared, or confused, or crumbling. I hope everyone finds some calm, or happiness, or just a tiny baby step, this weekend.
xo Janet
0 -
Peggy you have a lot on your plate. My heart goes out to you. Moving is so very hard. Hoping you will find some new friends in NC soon. DH wants to snowbird as winters are rough here. The thought of leaving unsettles me so I have a little idea of the upset at age 62
0 -
Peggy, this is the place to rant.
Have you had your sugar checked? I suddenly started getting uti's. Turns out I had diabetes. No one checked!
I'm getting tired. It's just one thing after another and every time I take a deep breath of relief and think "I'm alive! I got through!" Something else rams into me. Wed a l6 year old rear ended me and now i have a headache. I so don't want to go to the dr...again! I don't want mri's or ct scans. I'm hoping this will go away. But today I got really angry. It's illegal for a l6 year old to be driving with friends in the car. She was about 50 miles from home, in a very congested part of the city. Someone should have put some limits on someone born in l998!!!!
So, now, after two cancers, two surgeries, two chemos, anti-hormonals, a bleeding ulcer, diabetes, a hyperactive thyroid and kidneys and liver that are off, I have a headache and whiplash. This too shall pass. YES it will! And I'll take a deep breath of relief when it does!!!
0 -
I am on my way home after having a 'cancer holiday' - that is a free holiday for people with cancer, lots of women with breast ca and a few with other types. The thing is it was awful, too many loud people having a 'great time' all of them with a cancer dx, abseiling, rope walking, and having huge joyful belly laughs. I met one woman I liked and hope we stay in touch. Mainly, I felt totally disconnected and like I was even 'doing cancer wrong'. I just didn't feel like I belonged there. If I can't connect with other cancer patients, I don't know where to go cept here, to try to feel ok about things. feeling lost stilll nearly three years on.
0 -
winter, I was worried about you but it sounds as though your biopsy turned out ok!
That's a relief. Back to life with all of it's problems, but so glad you're ok.
0 -
Thanks for all the support! I really needed that today! Janet M, Chloesmom, and Timbuktu, it never ceases to amaze me the way people here take time out of their busy schedule to offer this support.
Wintersocks, I am so sorry you had this bad experience. It's really hard to go to something that is supposed to help and end up feeling worse than when you left for the experience. So disappointing. Hope your new friend stays in touch.
I love this thread and breastcancer.org. I don't know how I would have survived treatment and after without this great community. I tell every doctor I see about referring people to this org. Some of them take note, others not so much.
Hugs, Peggy
0 -
I've been tempted at times to tell drs. to take a look at the threads here. Particularly when they tell me something like "Arrimidex side effects disappear within 3 months". Oh yeah?
0 -
Winter, come and visit me in Spain.....i think you have residual PTSD and i have been there.......still am some days, and .i HATE all the overly happy, so glad to be alive "survivors" as i just think its fake, i even hate the word survivor...,....,,forced positivity is not real
0
