Calling all TNs
Comments
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Fern I had the robotic method hysterectomy last October. I must say I have had very little pain. With that being said my issues were extreme fatigue. I just now feel like I am pulling out of it. Chemo had sent me into chemopause and I already was having hot flashes and they continued after the surgery. It was awful and I had no energy. I worked through chemo but had to quit my job after the hysterectomy because of the fatigue and hot flashes. I was a hair colorist so it was very hard to work while sweating all over everyone. Remember that everyone handles it very different. I was quite surprised about my lack of pain and the incisions where so small and really a non issue at all. Keep us posted and check out hystersisters website, all kinds of info there.
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My 3 month check up tomorrow. Very nervous! New doc. It has been 2 years and 4 months since diagnoses. Fingers crossed.
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Fern- I had the laparoscopic oopherectomy , not a total hysterectomy. Not sure how much more is involved with the hysterectomy but having it laparoscopic is so much easier to recover from. They made a small cut on each side of my hip and also went through the belly button. First couple of days you have cramps and heavy bleeding like a bad period but then it improved greatly. Moving too quickly in the beginning and sitting in certain positions was also uncomfortable but I was pretty close to normal after 1.5 weeks. You do go into instant menopause and that was not fun but tolerable. Everything dries out and you get the hot flashes. I was still bald so I cooled down pretty quickly! If you have the hysterectomy, i would think it would be a longer recovery than mine.
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bak 94 - I will be in your pocket for your check up tomorrow - remember to take a few deep breaths every now and then - it helps relax and keeps you focussed. Hoping all will be well. Congrats on being past 2 years - I am not even one year yet.
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Hi Ladies - I just got my path report back & found out I am triple negative, I've been a little freaked out about some things I was reading. I was reading the recurrence is higher, & you don't have as many options with chemo? Don't know much, just learning about it. I am meeting with my oncologist this fri. They said something about a trial treatment , but I don't know what it is called. Does the oncologist give you choices or just refer you to a certain one? I really don't want to make any more choices!!!
I'm glad you are all here, it helps not to feel so alone
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OK. My stunningly beautiful, truly amazing, incredibly awesome wife Kathleen has decided to have a bilateral mastectomy instead of radiation. This is due to us finding out last week that she is positive for the BRCA-2 mutation. She will also be having a prophylactic bilateral oophorectomy (maybe hysterectomy depending on what doctor says). Can anyone offer any advice on bilateral mastectomy? Words of wisdom? Tips? Things we should know? Also, can anyone chime in about recovery time? Also, don't know whether to go ahead and have both mastectomy AND oophorectomy at the same time. Anybody have any thoughts on that?
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Soccermom... I am sad that you had to come here. But you picked a great place. These people here are all "warriors" in the same battle as you and are a great source of inspiration, information, and genuine caring. You are NEVER alone. It can be VERY intimidating to read about triple negative. No doubt about that. Sometimes it can appear to be a very grimm diagnosis. While I'm not trying to downplay the seriousness of TNBC at all, because it's a very worthy foe, there are positives that we tend to miss when we begin sorting through the "noise" that's out there. Those articles tend to focus on the negatives and sort of ignore the positives. Yes, there are less treatment options due to the lack of hormone receptors. BUT, triple negative tends to respond VERY WELL to chemo options that ARE available! Yes there is a higher chance of recurrence. BUT when you get to the 5 year milestone your chances of recurrence are actually lower than those with the receptor positive breast cancers. Also, if you read the following article: http://www.cancernetwork.com/conference-reports/mbcc2012/content/article/10165/2045206 you'll read that early stage, node negative, triple negative breast cancer now has about an 85% cure rate! As a man, I stand at risk of downplaying this and having you say, "Sure, that's easy to say when you don't have it." I get that. As someone who can only be a chearleader from the sidelines for not only my wife, but anyone else with this diagnosis, I simply want to say that there are strong, and abundant, arguments for hope as well! http://www.barnesandnoble.com/w/surviving-triple-negative-breast-cancer-patricia-prijatel/1110858513?cm_mmc=googlepla-_-book_25to44-_-q000000633-_-9780195387629&cm_mmca2=pla&ean=9780195387629&isbn=9780195387629&r=1
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Alhusband - Thank you for your words of encouragement, I really need them today. All the info. just through me for a loop.
i just got a bilaterial mastectomy 2 weeks ago, so I can help you with any questions. Monday was 2 weeks for me, I am still sore but stopped taking the pain med as it causes very bad constipation. I am getting better each day, able to take short walks, fold some wash, etc. The recovery time is 4 to 6 weeks. I am not driving yet.
They will tell you to take stool softneres, make sure she takes them, as the pain meds really constipate. My husband even had to talk with the pharmacy & they gave me a stool softner with a laxative & that helped much better. You can get them over the counter. It has been hard for me to sleep lying down, I had lots of pillows & propped myself up, but last night I ended up back out on the couch so I had more back support.
Let me know what other questions you have, I'd be glad to help if I can.Blessings!!!
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I did a bilat bmx but in two stages. They did the cancer breast first and tested my nodes which came back clear then two weeks later took the right breast and did immeciate diep reconstruction. Recovery was much easier from the msx only but Im very happy that I did the recon. Im almost nine weeks post surgery and still taking it easy but I went straight from chemo to surgeryso it makes sense that my body would take longer to heal.
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Hi AlHusband,
I'll put together a great checklist to help you all get ready for the BMX. That will come later. When is her surgery scheduled for?
The biggest advice I can give you is this: Get a hand held showerhead. This will really help your wife be able to care for herself and do the quick hit and miss thing while recovering.
Also, get a bunch of oversized handtowels (or smaller size towels) so that at each shower she is using a brand new clean towel. This is important, to keep bacteria down.
Get some little house jackets or shirts that button in the front.
I slept on couch sitting up for a solid 60 days maybe a bit longer. Made for a quick recovery with little swelling. I bought a bunch of $3 bed pillows from Target, and formed a big tower of 4 pillows, and then leaned against that. It wasn't so bad, I was able to sleep.
surgery and recovery
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Hi all, i did the bilateral mx and immediate skin sparing diep recon (one prophy) with a salpingo oopherectomy which was also prophylactic. I hade breast cancer and caught it early but i'm brca1, my mother had ovarian cancer and I have two healthy daughters so I decided to do away with as much risk as possible.
I'm 4 weeks out of surgery and I'm almost ready to drive. Hot flashes (at this moment), still some pain, discomfort but overall I recovered really well.
ALHusband ... Any questions feel free to message me (it gets confusing on the boards) but I would go for the whole shabang leaving the uterus alone. The ovarian cancers I believe stick with the tubes and ovaries. If your wife has some "extra weight" thats been hanging on to her, has she considered any of the flap surgeries? Maybe do a search to see where the breast surgeons that do them near you are because not all of them do it. But it's a more natural way to have recon over implants. The flaps can come from belly, thighs or rear end. I had a belly pouch and my plastic surgeon did wonders. I won't have anything else "touched up" or for me, no nipples or aureolas until after chemo but it was so worth it in my book.
Being brca this will all chop my risk down to almost a non genetically broken woman
I may have said too much but i just wanted to throw it out there.
My biggest tip with surgery is Myrelax And Colace And Probiotics....all the meds will really compact her and the last thing you want during recovery is sever constipation.
Sending you positive thoughts.0 -
I love my new doc! We seem to be on the same page with scans, she suggested a chest xray only unless I have any symptoms or blood work that is off. So, she agrees with my previous doc on taking tamoxifen, she likes it for anybody over 1 percent er positive. With that being said, the benefit of it is not as great as for higher er positive,so she takes quality of life into consideration, but thinks I should try it again. She also said I could get my port out and that I do not need anymore zometa, as I have had 8 treatments and the studies are so inconclusive with my stats. She also has cleared me for reconstruction. She said why not? She also called me a stage 3 and not stage 4 and thinks since my cancer was so nasty that it would have most likely come back already if it was going to(knock on wood) but she said recurrence drops significantly more after 3 years. Stuff I already had read or heard, but always nice hearing it. Now waiting for my tumor marker results.
Hi CS! So glad to see you posting again! Cute picture! Did I ever answer your question about my avatar? That is Romi, my 140 pound lab mix, I also have a black lab mix, border collie and chihuahua. The labs are getting up there in age, about 13, but still act like puppies.
Hi Stupidboob and everyone! I am melting here in Seattle, it has been over 80 for far too long. I know, not hot compared to everywhere else, but too hot for me.
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Inspired...surgery has not been scheduled yet. She finished chemo the day before yesterday and we have an appt with Breast Surgeon, et al, next week. Original plan was to do lumpectomy with radiation until FINALLY getting the results on BRCA testing. Lab has been way behind thanks to Angelina Jolie's announcement making genetic counselors' phones ring off the hook!
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AL: You are an inspiration! Your wife is fortunate to have such terrific support. I wish you both well on the next stage.
Bak: So glad you love your new doc. It makes all the difference, doesn't it?
Well ladies, I've just been told (by my cancer centre) that my risk of developing a new breast cancer is 8%! Holy cow, that sounds too good to be true.... just like an average person out there. (After surgery I was told 50-60% and chemo would knock that in half). I will receive a letter outlining that assessment, but for now, I understand the risk factors to include age, disease-free time out from treatment, family history (I have some, but it is not strong), non BRCA etc. It does NOT take into account TN. I'm pretty happy about this news, although it -- together with my apparently non-dense breast tissue -- basically disqualifies me from any more annual MRIs. I guess I can live with that.
Edited to add: I'm pretty sure this was a 5-year RoR period (certainly not lifetime)... I ran some tool and found out that had I not had a history of breast cancer, my risk would have been under 3%)0 -
Lauh, your stats are awesome! I'm so happy to hear this!
There's an outcomes calculator and conditional survival calculator and therapy calculator at cancermath.net and the conditional calculator determines prognostics based on how long it is since you've been out from treatment. They do ask for ER-/PR- for each assessment. Each year out, the overall risk of recurrence goes down, and thus survival rate goes up. CONGRATS!0 -
Oh Bak, it's wonderful to hear that you love your new Onc. That to me, makes a world of difference in managing this area of our life!
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Luah that is awesome news! Congratulations! Make sure you celebrate! I'm sure you've inspired many in this forum with that announcement, including me! God bless!
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Bak - wonderful news!!
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Bak so happy to hear all your good news and that you like the new doctor
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I know there is a radiation page but I want to ask you ladies..........:)
Did radiation kick your butt? I am so tired and getting more confused each day..............I want to see how I feel after this weekend and then ask if maybe we can cut back. I do not like being this tired and I understand it only gets worse. I was hoping it would be a breeze
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Had no fatigue whatsoever after 38 treatments, though I was told to expect this. Sorry you are having an unpleasant time with rads.
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Stupidboob, I had no fatigue at all. Every week my RO would ask about my energy levels, and they were always fine. One factor may be that I am less than 5 minutes drive from my cancer center so I don't spend each day driving distances back and forth.
Hope yours mellows out.
Carol
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I was exhausted after about 2 weeks. Maybe because it was surgery..4wks later chemo 4 wks later I started 7 wks of rads. It took about 3 months after I finished to feel the energy bounce back. I hope your strength recovers and you will soon be able to do the things you want
Mags
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Going to Hilton Head Island tomorrow with the fam...first time there since 2008 and right before BC...it's gonna be weird you know...didn't know what was ahead of me 5 years ago...now I know..I've changed...not sure if I like the new normal.....but what do you do....it's going to be a great time but I can't help and think back to what was then..and what is now...should I be thankful I'm alive..oh yes...but it was at a price..and and I miss the friends I made on here the past few years..I miss them so much.'
ah..sorry to be such a downer..life really is a good...but when I take time to look back and reflect...wow..the emotions go crazy.
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Stupidboob-Remember this is your SECOND time having chemo within a couple of years and then radiation, so of course you have fatigue. I am sorry it is kicking your but, it kicked mine too the second time around, it is so different than the first time. Hang in there, it is rough, and please do make sure your docs know how you feel to see if it is appropriate to cut back. Make sure you are getting plenty of rest and don't feel guilty about it, you have been through so much. Thinking of you!
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Stupidboob-- One month after finishing chemo, I got 25 rounds of radiation plus 5 booths. I had fatigue. It started about round 18. I was getting better after finished that about one month. Now I am near to normal.
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Stupidboob - I was post chemo and mx 16 months when I started Rads earlier this month and the fatigue has kicked my butt. I'm 32 and was running every other day before Rads started and now it's all I can do to work a full 8 hours (sitting at a desk) and get home to my recliner. It has slowed me down terribly. You're not alone! I've had 25/28+5 boosts as of today.
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The last posting I see is from 4:25 pm on Aug. 9th. Is something wrong with my refresh or is there some problem with this site?
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That's correct. It's been a quiet weekend, I guess. Hope everyone is out have a great time.
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Sometimes no news is good news.
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