June 2016 Surgeries!
Comments
-
4boysmama, side sleep: yes, there is hope! I couldn't even contemplate it for the first 5 weeks, weeks 6 and 7 I could do it but with pain when I moved, and now I'm sleeping on sides without any pain. For me stretching for the chest, trunk and underarm area has made a huge difference with pain, along with massaging all the hard scar tissue (gentle, circular movements). It helps with swelling too as the scar tissue can stop things flowing.
My TE officially has an expiry date. My second mastectomy and bilateral DIEP recon is booked for sept 29.
-
FBUC,
My guess is that the severity of the effects of the Lupron would depend on the dosage. Mind you, my fibroid was the size of a cantaloupe! I'm wondering if I was on a larger dose, hence the aggressive side effects. My hot flashes made me feel like I was on fire! Ask your doctor to really explain things to you. You don't have to feel intimidated. You have a right to have things explained to you to your understanding.
I'm glad you are getting some relief from the problem with your incision. Hopefully the swelling will go down some.
I've only had one fill (Last week) and it felt just a wee bit tight then, but now I don't even notice it. I'm hoping the rest of my fills are as easy, but I'm not counting on it.
-
If you had BMX with SNB when were your lifting restrictions lifted?
I'm only 4 weeks and understand all surgeons are different, but I'm just curious what others experiences are.
-
Thanks Specter,
If tomorrow I am fine, (considering I am not taking the arimidex today and tomorrow), chances are that it's not the Lupron giving me all the problems. Maybe switching to Femara will help, I don't know, I need to talk to my MO. However, having a monthly injection of Lupron is scary in itself. I need to find the one hormone therapy that will give me the least SE.
Tsoebbin, I was given the OK to lift small things after my drains were removed. No more than 5 lbs. If I am not mistaken, the 5 lbs rule is lifted after 6-8 weeks.
-
I was given the 5lb limit until 6 weeks as well. But was told that at 6 weeks I could go back to golfing.... Which seems absurd if not impossible at this point! I can't imagine doing so in only 2 short weeks!
-
Maya15- okay, that sounds right. I'm in all the weird pillow tacos trying to angle myself so I at least feel slightly sideways. I keep buying more and more cheap pillows. What will I ever do with all these pillows?!
My PS hasn't said anything about massage but that seems super logical- I should start doing that. Along my incision? Where my TEs are sewn in? I'm going to start that right away.
Specter55- I'm so relieved to hear your first fill was not too terrible. I'm so nervous for those to start, I'm 5 weeks out on Tuesday and my first fill is at 6 weeks! Eek! Nerves!
Hopefloatsinyyc- my PS said 5lbs total for 6 weeks, a gallon jug of milk approximately per side- then to take it as easy as possible until exchange because she didn't want scar tissue building up. But- you're straight to implants right? So maybe that's why she's encouraging movement. I can NOT imagine swinging a golf club though :
-
4BoysMama,
I was nervous about my first fill too, but only because my breasts are super sensitive to touch near the scars. The surgeon suspects it's a neuropathic pain. My skin crawls even to be touched there, but "there" is where the ports are. The needle shouldn't be that bad because you're supposed to be numb. Right.? I'm not. That's the worst part for me. I only get 50 ml per fill because I'm still having some pain. Good luck
-
Specter55- just got home from the Dr with a bottle of gabapentin/neurontin. So I'm crossing all my fingers and toes that it works. He said he'll try nortiptyline next if gabapentin doesn't work and his last ditch effort would be lyrica. He said they have a spinal shot they can administer too with the help of an x-Ray so that's another option. So much to think about!
I have a funny question - has anyone else been able to use a magnet to find the port on their TEs? I saw a silly blog post back before the surgery that said we'd be magnetic but without sounding like a loon- I've spent way too much time trying to get a fridge magnet to stick to me with no luck! Lol!! The things we do when we're bored/stir crazy I guess
Hope everyone is having a good start to their week
-
4boysmama, the nurses at my PS' office always use magnet to find the port, but I wouldn't try to find the port myself. I wouldn't want to damage the port or whatever, maybe the magnet in the TEs are not as strong as the magnets used on everyday items. I also have a card that was given to me, with TE serial numbers and explanations in case I travel and need to show it to the TSA agents. Although I would love to drive them crazy at the airport and let them figure it out where all the beebing is coming from. They'd probably strip me naked only to be terrified at the site of what once used to look like woman breasts :-) (mind you, my nipples are gone also)
-
FUBC,
I I would love to go through airport security right now and drive them crazy. I would be happy to bear my scarred up mishapen chest and let their hand wand light up over my naked breasts. Your move TSA! I don't remember getting a card validating my TEs for security purposes. All I have is a fill sheet. I'll have to go over my paperwork.
4BoysMama,
I am taking Neurontin right now. I don't notice a big difference yet. It hasn't been a week yet. I'm hoping I'll see an improvement by 2 weeks. I won't go beyond Lyrica. No spinal injections of me. I'll deal with the nerve pain.
-
FUBC- oh I laughed hard at that image! TSA would be shaking their heads!! 😂😂
Specter55- I got the impression from my Dr and then again when the pharmacist did the mandatory "new med consult" that it takes time, sometimes a few weeks- so let's keep hoping for you! Your poor skin needs a break!! Are you titrating up? I'm doing a schedule of 1 pill for so long, then 2, then 3 which is my "full dose". Hoping I get some relief {fingers crossed}.
-
FBUC
I am on it twice daily. It hasn't been a week yet. It may take some time before I begin to feel a change. Also, my PS said that the fills may help as the skin stretches, the irritated nerves may settle down. Let's hope
-
I just got a call from the MO - preliminary test results of the bone biopsy lean towards it being cancer. They are not sure if it is related to the BC - so tentatively, I still start chemo on Friday. If it is related, they are coming up with a new game plan - as that would make it stage 4. Sounds like it may be radiation first. She's hoping to know by Thursday.
-
OMG Silviah I'm so sorry, my thoughts are with you. I wish I could do something to help. Please keep us updated.
-
oh Sylviah, I am so terribly sorry. I'm going to keep you in my thoughts for health and healing. Please let us all know what happens. You are strong and brave, hugs from us all.
-
Oh wow Silviah, I am so sorry. I am praying for you. Be strong and remember we'll be here for you when you need us and when you don't.
Gentle hugs
-
Silviah,
Tears are in my eyes as I type. I am so sorry to hear of you diagnosis. I'm not going to tell you to be strong, because I wouldn't be. I will say, be you, let whatever emotions you feel come out. I am praying that you have the support around you that will help you through this. Hugs and prayers to you. Your sisters on this board are here for you
-
Specter said it perfectly.... Allow us to be your place to vent cry and scream... We are here for you- hugging you from far away and knowwe are walking alongside you
-
Thank you so much everyone!!!! With all the reading/research I've been doing - I'm feeling a little better, but not really. Every little ache and twitch is freaking me out.
-
Silviah - I'm sorry that you didn't get the greatest news, but I'm glad you've been doing research that's helpful. I wish you so much luck with whichever treatment you go forward with. I can so relate to over analyzing every pain in your body. When I was waiting for my PET/CT results back in December, I had diagnosed myself with every type of cancer possible. Keeping your mental state in check is half the damn battle. But agree with those above, please vent, complain, scream, or whatever you need to do here. I am rooting for you!
-
Sending gentle hugs silvah!
-
Silviah, everything everyone has already said, I want to say as well. Thinking of you and remember we are with you and all sending positive thoughts and energy to help you. XX
-
Silviah, I am so sorry for all you are going through right now. I think Specters said what we are all thinking. We are here for all of it. The ups and downs, anger, scared, determination, and all of your emotions. Just know that even though non of us really know each other we are all bound together by this stupid disease. We are here for you through your journey. God bless you.
-
Silviah, big hugs.
-
Silviah - Please know that we care and understand your anxiety. We are here for you!
-
Just got back from my PS. I got another fill. I mentioned the nerve pain. She suggested that I use a washcloth and rub the area while I'm in the shower. She said that it helps to desensitize the nerves. I never would have thought of that. So I thought I would pass the information along to you guys in case you have nerve pain also. It's worth trying and it's not a medication.
-
Mom2fourplusmore,
Thanks for the info. I don't even know if I can they the suggestion from you PS. When I say sensitive, I mean even light touch is so uncomfortable. I've been on Neurontin for one week. I really haven't noticed a difference yet. I'm hoping it will kick in by next week. Hopefully I'll be able to try this technique soon
-
Mine is almost completely gone. I kept massaging constant;y the areas that I felt the nerve burning/hurting and by constantly I mean the whole time I was sitting in a couch watching TV :-) I tried a hand towel, not in the shower though, and that didn't help me much. Massaging helped with the numbness also.
-
Specter55- when the Dr gave me neurontin, he was very optimistic about how quickly it would kick in and I'd have relief- but then at the pharmacy the consult was much different. He said repeatedly that it could take a couple of weeks, it could require building up to a higher dosage, etc. It's so crazy how the info is different everywhere we go. The pharmacist explained to me that Lyrica worked in a similar manner to neurontin so if I didn't feel relief- to try nortriptyline first because often people who didn't like one, like the other. A friend of mine who had her BMX 2 years ago had what you describe, the skin that was just "on fire" as she called it. She had great luck with nortriptyline so maybe that will be your ticket. Thinking of you and the most gentle hugs ever!
-
FUBC,
I never expected immediate relief. Your pharmacist's explanation sounds more realistic to me. My pain is only with touch, even very light touch. I'll manage. Lyrica may be more effective, but it can also be habit forming. I'm trying to reduce my medication, not become dependent. Off to my second fill. I'll let you know how it goes.
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