Hysterectomy questions following ER+ BC
Comments
-
I'm have complete HX next month and will keep you posted. Going to ask about the bladder stuff. Don't want any issues.
-
Farmerlucy---Hearing stories like your sister's gives me great hope! I'm pretty sure that the Tamoxifen is just lurking in the background waiting to blindside me so I'm still preparing for "some day". I'm hoping I get far enough into menopause that surgical menopause won't knock me for a loop!!
By the way, I had an endometrial biopsy also which was negative. However my doc at the time said those biopsies are "like looking for a tennis ball on a tennis court with your eyes closed" so take the results with a grain of salt. But I also had her run the CA125 test (I have it done every time I get an US) which show normal levels so I'm comfortable with the watchful waiting approach. In the meantime I, too, shall work on strengthening my bladder!!
-
All my test were fine and she said she removed a polyp which may have been causing the heavy bleeding. She said I could wait or schedule a D & C. Ummm, waiting sounds like a plan, especially since time is on my side with Mrs. Men O. Paws!.
-
I'm 51 and wondering if all this crap I'm experiencing is perimenopause or Tamoxifen or both. Dizziness/lightheaded, fatigue, bloating, burping, peeing all the time, night sweats, heart palpitations, weight gain, sinus pressure....the list just goes on and on. I'll have a couple of great weeks and then have a few really bad days/nights. I'm still having periods although they were a bit sporadic through the spring and got regular again over the summer. The dizziness is the worst part! Makes me feel like my blood pressure is low or like I'm breathing too lightly if that makes any sense. I don't mind the menopause part cause I'm hoping to get through it so when I have my hysterectomy, surgical menopause won't be as bad. But damn!!....this is the pits. And when it happens in the middle of the night, my mind goes to all the dark scary places that start with brain tumor or heart attack! Ugh!!
-
lala - I am exposed to all types of allergens daily - lots of pets, lots of outside work, so my sinus are generally blocked. When I get a sinus infection I sometimes get dizzy, my teeth hurt, and the base of my neck hurts. A net pot works really great for me.I am also ready to get the "peri" part over with.
-
Sounds like perimenopause. I had almost all of those symptoms at different times for the last six or seven years except the peeing and weight gain! The blood pressure feeling for me was prob low blood sugar. Found when I had that I would eat and it would improve. The whole thing is wierd and annoying but the good news is that I had my ovaries out 2 weeks ago and it's all gone! Never felt better. There is hope!
-
Farmerlucy--I was given one of the nasal rinse bottles which I used for a couple of months but didn't feel it made any difference. I really don't think it's allergies for me. I actually feel better when I'm outside so doc thought mold allergies but then I moved north just for the summer months and feel the same here. I'm pretty sure this is perimenopause.
Kamm--I really hope I don't have to go thru this for six or seven years! Wow! You're one tough cookie! I've got the weight gain more or less in hand. I work out every day and don't lose and ounce...but I'm not gaining much either. I've gained about 5 pounds since diagnosis a year and a half ago and my MO is delighted. He said most of his patients who go on Tamoxifen gain 20-40 pounds in the first year! I guess I should watch my eating a little closer. I'm so worried about gaining weight that I tend to slack off on eating. And then when I feel dizzy or bloated, I then don't want to eat. I'm sure a hysterectomy is not too far off for me. Hearing you've had your ovaries removed and feel better is a HUGE relief for me. That's my biggest worry.....that I'll get tossed into surgical menopause and feel even worse than I do now. I just need to think positive!!
-
No question that everyones different but estrogen was never my friend hence the 100% Estrogen positive IDC. Except when it came to having babies on demand! I know most women need some to feel good and some will get energy and mental changes without it but for some reason I feel soooo much better without it. Clear headed, no bloating and a lot of energy! Now, the vagina may end up being like the sahara eventually but I'll deal with that then! I also worried that it would be worse but I am here to tell you that there is hope. I had the worst PMS my whole life and so glad to be done. I'll pray you are the same!
-
kamm, I hope I get it the way you did!! I'm hoping to feel better without the fibroid bloated belly! one month and 13 days to go,,,, -
Hi ladies! It's been awhile since I've been online. Got caught up in work and life and getting accustomed to my "new normal". After doing further genetic testing on myself and my mother, we discovered both of us carry the BARD1 gene (high risk for breast and ovarian cancer). After a long discussion with my MO and my gyn, we decided it was time to proceed with another surgery. Yesterday morning I had a total hysterectomy and ovary removal. My surgeon thought this was best based on the fact my cancer was inherited and with taking Tamoxifen which can increase your risk of endometrial cancer. I'm home recovering now, have bad cramping and pain in my shoulder. Was wondering if any of you can give any advice of what I'll be experiencing in the next few weeks of my recovery??
Hugs,
Jen
-
Hi Jen,, I'm having mine on the 29th. You beat me by almost 2 weeks. DId you have robotic or abdominal or vaginal? The shoulder pain is from the gas that they pump in to better see your organs. That should get reabsorbed into your body within a few days. I've heard laying flat helps,, but also heard walking around helps,, anyway, walking is good to prevent blood clots and get the bowels moving again. Drink lots of fluids!! Hopefully someone else who has been thru it already will chime in.there is also a site called hystersisters.com There is a lot of post op advice over there. And a lot of ads, which are kind of annoying. But there are a lot of articles to read which you might find helpful. Best of luck. Keep us posted.
-
Hi Glennie, thanks for the reply! I had a total laproscopic single point (1 incision through my belly button) hysterectomy with bilateral oophorectomy. The single incision is very small so I was happy about that. I tried laying flat but that seems to make the stomach pain worse. Being up moving around seems to help. My surgeon also told me today that I can use a heating pad as often as I like. That helps with the cramps and gassy feeling. I know I'll feel much better in a few days. I will check out the site you recommended as well. Good luck to you on your surgery on the 29th!! Do you know what type you are having? Are they taking your ovaries as well?
Hugs!
Jen
-
Hi, Jen,,, I'm having a robotic lap and yes, ovaries are going too. I'm being "spayed" as I tell my friends. My estrogen levels are very high, so I need to get rid of them. You sound pretty darn good for 2 days postop! I'm impressed!Keep us posted!
-
Hi Glennie
Spayed, that's funny but so true! I think I will use that term as well. Day 3 and I feel much better today. Gas pains have subsided and the pain in my shoulders and back are getting less and less. Just very tired today. I'm sure I did too much yesterday. Today I have help at home so going to take advantage of it and let my family help me, and just rest. I have to keep reminding myself that just because I have a tiny incision on the outside there was major work done on the inside and I need to give my body time to heal.
I had my surgery because I carry the BARD1 gene (me and mom both) and am high risk for breast and ovarian cancer. My gyn surgeon decided to take it all since being on the Tamoxifen. She wanted to reduce my chances for any type of further cancer anyplace else. My pathology report came back yesterday and all was good. NO cancer cells present! Woot woot! That made my day!
-
YAY!! That's awesome news! Glad you are feeling better. Stay in your nightgown,, that was my advice today from the secretary at doctor's office! If you are in your nightgown, you won't be trying to do too much! Maybe I'll buy a new nightie before surgery!! -
lala---- that's wonderful news that everything's back to normal ranges and you can avoid the hysterectomy!!! I had a TAH/BSO at 47.5 (due to large ovarian mass, which fortunately turned out benign) and the combination of major surgery and immediate surgical menopause was really rough. It affects everyone differently of course; I had hot flashes, night sweats, and felt very emotional and "on edge" for several months following the surgery. Things leveled out over time, but I still have some hot flashes, insomnia, and achiness now , even 9.5 years later. I didn't take effexor as prescibed years ago, and sometimes I wish I had. (I didn't want any more SEs from another medication). Now my gyn presribed Brisdell, but I probably won't take it. I've put up with menopausal issues this long, I'm kinda used to them really. Since we can't take HRT due to the elevated bc risk, it's better to hang onto the ovaries as long as you can. provided it's medically OK to do so. by your physician)
anne
-
Glennie good advice! I may need to try that myself tomorrow. Good excuse to buy yourself a nice, cute nightie before your big day at the end of the month.
-
Thanks, awb. I'm hoping to just keep delaying this a bit. The issue I'm grappling with now is the ovary removal part. My gyn says remove them to reduce risk of ovarian cancer, but my MO says Tamoxifen reduces risk of ovarian cancer. So how do you decide which is the way to go? I'd hate to leave the ovaries only to have to remove them down the road in another surgery, but I hate the idea of removing them only to be hurled into surgical menopause! There should be some sort of formula for this to help us decide!
-
lala,, just curious. You are on Tamoxifen now,,, does your body feel like it's in menopause? Was just wondering how much of a difference removing your ovaries would be on how you feel? I can feel you,, wanting to avoid another surgery down the road.My surgery is one week from today. Almost here, and I'm glad. Cramps and bleeding have been really bad, so I'll be glad to get this over with.
-
glennie - crossing my fingers for an uneventful surgery and recovery. You got this girl!
-
Thanks, Lucy !!! -
glennie19---Funny enough I thought I was going into menopause for the last 9 months with sporadic periods, nausea, dizziness, bad bouts of burping, headaches, etc. Then about 3 weeks ago I sat down and looked over my notes (I keep detailed notes as to meds I start/stop and effects per a recommendation by my MO. He said it would help me know what Tamoxifen was doing to me as opposed to "normal life".) and I realized that just a few days before all this started I had started and new multivitamin. So I googled whether multivitamins can cause these types of symptoms and found that it is possible and One-A-Days are particulary bad about it which is what I was taking. So I quit. After 5 days, all my issues went away!! It's now been 2 weeks and I feel the best I've felt in months. Still having sporadic periods so guessing I'm heading into menopause and sometimes in the early mornings I have "warm flushes" but otherwise no issues, no pain, nothing. This is why I'm so hesitant to have the hysterectomy....most people have it for pain, bleeding, etc and I don't have those issues. Just slightly thickened lining and ovarian cysts that resolved themselves. Heck, even my fibroids don't cause me pain or real,y heavy bleeding when I DO have a period.
Praying for an easy surgery and recovery for you. Keep us updated on how it goes.
-
OMG, LALA,, it was the vitamin??? Holy moley,, well at least that was an easy fix! If you start a vitamin in the future, definitely take it with food on your stomach. If I take it on empty stomach, it makes me nauseous too. Right after breakfast is my time.
warm flushes and sporadic periods sure sounds like menopause,, so here's hoping no surgery in your future! I had my preop appt today, and I'll be her first case on Monday,, ,which means less waiting,,, YAY!! Will keep you posted.
thanks, glennie
-
I always take all my vitamins and meds after eating a full breakfast so that wasn't my problem. Also, my symptoms could pop up at any time of the day (or night sometimes). I'm still cautiously optimistic that I may have found my problem but I'm going to give it a couple more weeks to be sure. Some of these vitamins have many unknown "fillers" in them. You never know what may react with your body. For those on Tamoxifen, you know that the different brands cause different side effects depending on the fillers used. Must work the same way with some vitamins.
-
at least you seem to have found the cause. Hope it truly was that !! -
Glennie just wanted to wish you good luck tomorrow on your surgery!! Keep us posted and let us know how you make out. I'm 2 weeks post op tomorrow and feeling pretty good. I have my post op appointment with my gyn in the morning. Hoping she clears me for work and will find out what I'm still restricted on doing for the next few weeks. Now that I'm physically healing well, I'm terrified as to when/what menopausal symptoms I will get! I have read so many horror stories the past 2 weeks that it keeps me up at night worrying. I can deal with occasional night sweats/hot flashes if I get them, but I don't want to stop living my life at 42 (weight gain, mood swings, insomnia, vaginal dryness & no sex drive). I'm hoping and praying I'm in the 20% who don't get any symptoms. My mom was 7 years older than me when she had her ovaries removed and she did fine with no side effects. So far I've been lucky with taking the tamoxifen. I've been on it for over a year and the only side effect I have sometimes is cramping in my legs and feet. I'm determined once I get the all clear from my doc, to start watching what I eat and go back to the gym. I read that it's normal to gain at least 25 lbs or more the first year after ovary removal, with most of going right to your belly. Ack!!
-
really? 25 lbs? Yikes! Well, surgery is in a few hours. Will keep you posted.
-
I'm home! Got the gas pains so uncomfortable. But overall it went really well. I only have 4 small incisions. More later.
-
yay glennie! Glad you're home!
-
Yay! Glad it's over and was a success! Get lots of rest, remember to pamper the princess!
Hugs,
Jen
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team