Im bitchy, I moan, I groan.....anyway.
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hey all what sux?!!!
ok here's my suckage for the month. I am going on day 10 of my period. NEVER had it this long before. Should I mention that not only does my gyn think I have a growing fiibroid but now on my latest transvaginal ultrasound the ovarian cysts (2 simple vs a septated) has now morphed into "ovarian mass" WTF!!!!!!!!!!!!!!!!!!!!!!!! Planning on hysterectomy in August and at least that ovary out.
My family and I planned a vacation to Washington DC in 2007 (put on hold because I went to get yearly mammo and found cancer)
This year we're planning a vacation and now this!!! It may not be much in the scheme of life and such but IT SUCKS BIG MONKEY you know whats!!!
Sorry for the rant. Hope everyone has a suck-free week.
Hugs,
Trish
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Trish- I get 10 day periods now, and I think it's unrelated to BC or RADS (Low oncotype score got me out of chemo, just barely). I know I have big ol' fibroids since 2005, when I started trying to have a baby. And these 10 day periods are like HEAVY. Evidently, there are heavier periods, when i told my Gyno, this was before BC, she said something like "Well if you are soaking pads more than every 1.5 hours let me know and we'll put you on something..." EVERY 1.5 hours???? I have had to switch to overnight long pads and put a towel on my bed when I sleep- and still, I have to be careful where I sit.
On the hysterectomy, I dunno. My feeling is they can at least fairly reliably find trouble in the uterus but the ovaries, those suckers are the "silent killers". And the surgery and the SEs from hysterectomy are a lot more trouble than the laporoscopic salpingo oomfwhatchamacallit. One of my pals on another thread here had her ovaries out, it was outpatient and she was gardening that evening. She's really pleased. I checked with my ONC, is it really that easy and he said it was. I'm going for it after I settle in with Tamox. Just my .02. Hope you find something that works for ya- oh and the periods actually help reduce the chance of cancer in the uterus... sluffing off old cells...
THAT SUX as needed.
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I always get handed the drink and then have the IV. And Im allergic to the contrast dye. So I have to premedicate..... when I had my surgery on my kidney..... they used the same dye and I wasnt premedicated so they gave me 50mg benedryl and rolled me out.
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Wishing you well Saint...as always.
I went in for a blood test today to see why I feel like crap after bragging about feeling so good for two months. I finished chemo end of Febuary. I might just have fat-ass syndrome.
Okay....I'm finished complaining. That does feel good. Thanks ladies.
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Sessna, big fat hugs to you. And Traci, and Dream and prayrv & my friend with lung CA & everyone who needs 'em.
It rained like it was the end of the freaking world here today. We've got flood watches & thunderstorm watches through the end of the week. Oh, joy.
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ReneeS - Everybody has a right to whine, no matter what stage they are. We all have feelings and fears and hopes. I think it would be horrible to tell someone that their fear isn't as real or as important as another's. Unless you are on a Stage IV only thread, you should feel free to share openly. I also understand and respect the Stage IV people's need for their own thread.
I went to my pcp today. She didn't have half the reports and when I gave her my copies, she still didn't address anything. I was the last patient of the day and the practice has cut her hours to 4 hours per day in the office and 4 in the hospital. By the time she saw me, she had already seen 18 patients. She never did address the results of my PFT and she said she'd talk to the cardiologist at the hospital about my echo. I love my doctor to death and I don't want to change doctors, but I feel like she's dropping the ball on this one. I have to see my med onc in July, so maybe he can make a recommendation.
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Hugs everybody,
Renee, I sent you a PM.
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Renee, I felt like crap for months after rads. I don't know how anyone can feel good going through the "scorched-earth" approach to treatment that we all get. I saw Dr. Susan Love give a talk the other night, and even she used one of the phrases I often use (& have used here), describing typical breast cancer treatment as the "slash-and-burn" protocol.
So, this is the place to bitch, moan & groan, so let it rip!! If we can't do it here, where the heck can we???
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Rachel, (for those others - TMI alert!!)
thx for the info - I had my gallbladder out lapro this past May so I know the procedure. As to 10 day periods, screw that. I've always had heavy, painful periods to where I would be curled up on the bed in the fetal position with a pail by the bed so that I could barf the pain being so bad. I know all about having a towel under me at night. However, my periods always were only 5 - 6 days in length and stopped completely on the 7th. Days 3 -5 I could go through a super plus tampon in an hour. This past cycle, I actually tapered off on day 6, then on day 7, 8 , 9, 10, & 11 I would be walking and have this "discharge" to where I had to run to the bathroom and put a tampon in. Luckily I was already wearing a pad! Then the tampon would be soaked through in an hour to where I would have to change it. Then the flow would stop. The next day, same thing. The color was dark brown to reddish black. The length and apparent change in my cycle is so out of whack for me.
As I have been on tamoxifen for the past year and a half, with my periods getting more painful and heavier (I never thought they could, but they are) I am majorly concerned. The following statement is on BCO website about tamoxifen:
"Tamoxifen may also cause non-cancerous changes in the uterus. In some women, it may increase the risk of blood clots or endometrial cancer (cancer in the lining of the uterus)."
I just wish I could get the gyn's nurse to understand my concern that I am having issues and would really like to talk to the Dr. about this latest saga. She just seems to think I want to schedule my surgery (I do but I called about this problem and what it could mean). I just need to decide if I want the one ovary out or both. I am having not other se's from tamox - no hot flashes and I am sorta scared of the AI's. I guess if she finds the left ovary has issues, just to get them both out.
Well that's my bitch for the day.
May everyone have a suck free day!
Trish
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As much as I like to get out and do things, I pace myself because (as you all know) there are good days and bad days. This last tx has brought more aches and pains than any other,so I am creaking around like a very old lady. If one more person says I "look good" and "wow, you have such curly hair", I may punch him/her. I had curly hair before and no one mentioned it - is hair such an odd thing to have? I can recommend a good oncologist so theirs can fall out and then come back curly - !!!!!!!!!!
As far as looking good, I deliberately use make up, not a lot, but I know how to hide the dark circles and a bit of blush adds the rosy cheeks. I work at it and it is nice to be complimented, but I must have really looked bad before -- know what I mean?
Renee, I had an issue of one doctor not addressing my questions and I flat out said something like IF I don't ask you, WHO should I ask? Are you not my doctor and are you not trained in medical issues? That opened up a good discussion of MY issues and from that time on, I was not rushed out of there with unanswered questions. Another suggestion is write down your questions and give a copy to the doctor. check off each one as you get answers. Your time is a valuable as the doctor's and you or your insurance is Paying for his/her time...
THAT SUCKS, as needed. HUGS, Nancy
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Those of you who know TerryO (from chats) and her SO Cathy may want to know that Cathy was diagnosed with a brain tumour. I have opened prayer threads in Stage VI and Prayers and Spiritual Inspirations.
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a couple (hopefully) quickies:
Trish-On the period stuff (TMI alert) I meant to say I had to switch to overnight long pads for DAY time too. All my live I had convenient periods so regular I could tell you what TIME they'd come: 10am on the 28th day. 2 heavy days, 2 medium days, and one little pain in the rear brown spot on the 5th day. 2005 they told me about the fibroids and were suprised I had no cramps. I had no idea. Now I am not on anything, I just had surgery and RADs, and I have these damn 10 day bleedathons, full of all kind of freakin gore. If I had been having sex I would have been worried there were miscarriages in there. During those 10 days I am weak, incapable, tired, crampy... even if I pop motrin like candy.
I read something about Tamoxifen causing growth in fibroids and the stuff you listed in your post, but my ONC said, and my GYNO said, that the Tamoxifen should actually shrink my fibroids. What confusion. I was going to get a baseline ultrasound but when they got to the part about drinking all the water first I was like... uh... no. I thought it was the ultrasound like I got for IVF, no water drinking. Of course it not the water adn stuff itself, its the banal cruelties of the office, making me wait with the full bladder and all. It was something I had asked for, not recommended, so... uh... nooooo.
Most of all, what Lefty said... look, this is serious business here. You need to have a consultation with your GYNO and if he/she doesn't take the time you got to get with another GYNO and sort it out. Your instincts are telling you to find out more and not just schedule surgery. My gal pal does not have BC (thank G-d) and she had 3 kids in her 20s, hubby wouldnt get vasectomy so she got her tubes tied. She's had no end of trouble since. Plus- you are not having hot flashes on Tamoxifen? Any chance you are not metabolizing it? There are other Tamoxifen type drugs to try before AIs. One good thing, having your period is good for reducing the chance of uteran cancers, cause you're shedding cells. That's what my GYNO said.
Renee- a coupel thingies... you speak about the chemo but didn't mention your RADs, which KAK pointed out can cause problems for months after... and I am here to testify hell yes. Tuesday I slept all day again, couldn't get up, even nearly missed seeing a friend who came in from Cali... had to drag myself out of here, and last week I got the frikin rash back under my boob. It had been sore and stuff but I dismissed it. It was not getting better until I started with heavy duty cortisone. I still think that was the wrong thing to do, but that's what the idiot dermatologist said. Today I get it, my big boobs STILL heat up the radiated boob, and I need to keep something under my boob to stop it from re-heating. And you didn't mention you just had that slapmesilly oomfarectomy thingie and were gardening the same night - which set you back. We all want to get back to our lives, we all know about exercise and we all keep discounting the shock(s) we have dealt to our bodies. Yeah, they told me some women have side effects from RADs for years and some even forever... but they make it sound so rare.... well.... I have adjusted my thinking about how long the SEs are going to last. And you also got some good ol' fashioned stress these weeks unrelated to BC... that could do it to anyone, BC or no BC.
And did you start the Vitamin D3? Someone said they were feeling run down before they started taking D3 against BC, and they also had it tested and their D3 was extremely low.
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Rachel,
Thanks for responding - my cancer was 100% er+ and that plus the tamox feeding the f-n fibroid, my gyn and I are in agreement to get the uterus out. We have had many a conversation prior to my bc about the heavy/painful periods I have. I wear super plus/ultra tampons plus a pad for my heavy days, believe me I understand heaviness. And the gore - I have it too. As for the discrepancies between opinions on what tamox causes or helps with, I'm going with what the ACS and the prescription guidelines give me. Gyns & Oncs have opinions and they differ alot of the time.
As to the se's on tamox, I did have a few warm flushes during the first couple of months, the pressure in between cycles and of course PMS that would put Linda Blair to shame. My onc says that if I had some se's at first, I am metabolizing it. As to other drugs to use instead of tamox other than AI's, what would they be? I am premenopausal and the only hormonal to use is tamox that I am aware of.
The transvaginal ultrasound was not bad - I only had to hold my bladder until after they did an external abdominal ultrasound (like when you're pregnant). I was then able to relieve my bladder for the internal scan.
Hugs!
Trish
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Trish- I misunderstood/misread your post about the nurse not understanding you wanted to discuss whether to also add the ovaries to this surgery, I thought your GYNO was not taking time for you. Yeah, that's the kind of thing that makes me less enthused about signing up for an ultrasound- those cruelly insensitive staff members. I know how long the wait is for the mammogram, if I had to wait like that for the water drinking sonogram...and since none of the docs wanted this... I figured fugetaboutit, it will be what it will be. Oh and my shrink gave me a tip about the ultrasounds, she said not to drink all they say, just enough to feel full. I can drink more at the office if its not enough. Yeah!
OK the Tamox SE's, this is very ACS...
http://www.cancer.gov/clinicaltrials/digestpage/BCPT
The Breast Cancer Prevention Trial
A quick search on the ACS site brings up loads on the Breast Cancer Prevention Trial, way too much for this post, as I probably already screwed up the fonts. But here's one summation from the ACS page:
"Does tamoxifen have other possible side effects?Like most medicines, tamoxifen causes side effects in some women. The side effects most often reported by women in the BCPT study were hot flashes and vaginal discharge. There were other side effects, but these were no more common in the women who took tamoxifen than in the women who took placebo. They included:vaginal dryness, itching, or bleedingmenstrual irregularitiesdepressionloss of appetitenausea and/or vomitingdizzinessheadachesweight gainsevere tiredness (fatigue)Treatments that could reduce or do away with most of these side effects are available."When I read that, it really didn't help me, even the " these were no more common in the women who took tamoxifen than in the women who took placebo"
part... it wasn't until I looked at the actual figures in the first link... I saw all these women with these side effects and was freaking, until I saw the figures of the placebo group right beside them... and they were the same. It feels like they are dismissing me out of hand when they say "you'd be having those side effects anyway at your age", but when I see the data from 13,000 women proving the point, it really helped me!
Coincidentally, when i was doing the search on the BPCT on ACS, one of the links was:
http://www.cancer.org/docroot/CRI/content/CRI_2_6X_Tamoxifen_and_Raloxifene_Questions_and_Answers_5.asp
That's one of the cousin drugs for Tamoxifen that's not an AI, Raloxifene. I remember my ONC brought that up, and one other I can't remember. I don't remember much about it, just that it was a cousin of Tamoxifen.
I also didn't know you had the hot flashes at the start and then they went away. That's also what everyone reports and what I am hoping for, and why I am waiting (with my ONC's approval) for September to start Tamox. It's so damn hot already and I have to lose some weight (even though statistically the weight gain is no more than placebo), my hope is that I will start as the weather gets cold, be more comfy with hot flashes during the winter, and hope they'd subside by next summer. I was totally bummed when he said I'd just as likely still get my period on Tamoxifen. Well, at least it will be sluffing off cells.
The part about taking a break for a couple weeks is totally not ACS. That's totally BC.org. I told my ONC about it and he said if I have a problem I could try that. Helena is one of the canaries in the coal mine there, she's had good success so far with her break. Everyone I read about who tried it did great.
Now that I know you and your GYNO are comfortable with the hysterectomy, I am with you totally on wishing it a Bon Voyage, ta ta, farewell, and don't let the door hit it on the way out. Buh Bye.
I am clueless on the part about whether to take the ovaries at the same time, so I will keep my mouth and typing fingers shut there.
A question... a lot of people talk about what % ER+ they are. I don't know if I ever saw anything like a percentage for my hormone positivity? I just know I am strongly both ER and PR positive. What test shows the percentage?
2 more things... have you talked to your ONC about Zometa?
and did you see this cool presentation from the head of Breast Cancer at Sloan Kettering? YOTH posted it (from DDLat) and it's really wonderful. Made my day.
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Sad news to report ladies. RanD has passed away. She used to spend time on this thread before she got really sick.0
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Oh, crap, THAT SUKS. Hugs for both Terry and Cathy. Prayers will be sent up.
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Holy Sh*t....RanD was a constant on the may 08 chemo thread wasn't she? I had no idea she was in such a state...thats so sad, prayers for her friends on the threads and her family. Thanks for letting us know Renee...now's as good a time as any to pour a glass of wine!
Hugs everyone...
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WhaSux?
I remember RanD----I think she had very small children---THAT SUX!! Prayers & condolences to her loved ones----at least she has no pain now......
Traci--so sorry you lost a friend.....hugs!
Sue---Good to see you & glad life is reclaiming you! Go back to it with our blessings, but stop in for a fly-by now & then!
AKA---that is my pet peeve, "You look good" wtf is THAT supposed to mean-- I once asked someone---what did you expect? weeping sores on my face??? (I was deeply in bitch-mode that day! LOL)
Renee---this IS the place---just let it fly!
Navy--to counter Barbe's post--I had a shot in my shoulder that lasted a year. Had another in Dec that still seems to be working (knock on wood)
Sessan--HUGS-I just had this talk with my friend yesterday! I think the reason I'm not going crazy with loss of sight is that it happens SO slpwly! I look thru these eyes every waking hour & it seems my body & brain accommodate the loss so that I am not as aware of it as I am when I get a "field of vision" test! Big hugs----I sure can appreciate how you feel.
Trish--about 2 years ago I saved ALL my paychecks starting in sept so we could all go to Ireland----in Jan my mets progressed & tx changed---so we redid both bathrooms instead! I sometimes resent it, but I use those bathrooms everyday--we should have made one green & called it Ireland or the Blarney Stone!---it sux
Talk about TMI---I had 10 day periods my whole life---I remember in HS we used to lie to the swim teacher to get out of having to do our hair afterwards...but when I told her 2 weeks in a row that I had my period I wasn't lying!!! She once told me to talk to my doc----he always said it was "my normal" but I hated it---and the towels & 2 super tampons with a nite pad!!! Yep--been there & glad of chemo-pause! ..
THAT SUX for anyone I missed & big hugs to all---this was a big effort for me------I'm gonna go lie down now --LOL
Be well & stay strong
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Yeah, those of us on the May 2008 chemo thread are in mourning.
ranD was having some difficulties lately. She told us just last week that she had been dx'd with bone mets. Three days ago, she said she would be having an echocardiogram and starting zometa (I think) on June 30.
But she's gone.
otter
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I didn't know RanD, so I looked up all her threads. I have been reading ever since Renee posted. All I can say is I am heartbroken for her loss. Thank you for giving me the opportunity to read her story.
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I will toast to RanD as I celebrate the forth of July. She had a son in Irac and struggled with her DIL quiet often.
Saint....The is an organization that grants wishes to stage 4 breast cancer patients. I'll see if I can find the information for you. I'll be out of town until Monday so it may take some time.
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What really is my bitch here is that I am having my first abnormal period EVER. I'm used to having my 6 day periods that are just horrendous. It's the lacadazial (sp) attitude from my gyn's nurse that "well if you start to feel light headed or dizzy, call right away" WTF? I'm already anemic, no surprise. But what, and it would be nice if the nurse would give me an answer, caused this cycle to still be hanging around. I'm still spotting (dark but not to where I need to wear a tampon), so this makes it day 12 if we're keeping an official count of days that I am having a period and then some.
Anyone here have the issue of an abnormal period? and what did your dr. say could be the cause? Yes I know we are not professionals here - just want an idea of what could be happening.
Hugs to all.
Trish
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Found it.
It's called The Making Memories Foundation. I read about it in a book writen by Nancy White Kelly. The Living Lady............
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Making Memories Foundation
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Saint.....I did'nt read all of the web site but it does say that the wish location has to be in the US. Darn it.0
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I can relate to the insensitive medical staff. I saw my PCP yesterday to go over 4 tests she ordered recently. I always get copies of my medical reports as soon as they are ready. They were all abnormal, so I made an appointment to go over them. Before she came into the room to see me, I heard her tell her nurse she had 4 minutes to see me. First she said all my tests were normal. So, I started rattling off the results I had that were not normal. Then, she said she didn't have the results. I told her I had them and I would share them with her. All I heard was how she had seen 18 patients in 4 hours and she's working harder than the rest of the doctors in the practice. Long story short, I still don't know why the results are off, what they mean or what I am supposed to do about it. So, today, I called her office and left a message for her nurse to talk to me. I was going to ask the nurse her opinion - i.e., should I see another Dr. in the practice? I couldn't even get the nurse to call me back. So, I think I'm just going to find another PCP. My niece suggested the one her husband goes to, so I am going to see if he accepts my insurance and go from there.
Ugh!
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Holy crap Jane! That is inexcusable! She didn't have the results, but everything was normal? I guess she figured no call from the testers and all is okay? I would like to get paid what she got paid for her 4 minutes with you! I wouldn't have left the office without an answer, as now someone ELSE will get paid to tell you what she should have told you in the first place! Arghhhhhhh!
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Renee--THANK YOU! It was sweet of you to try to make my dream come true.........BUT dd's HS theatre group has been accepted to perform at the theatrre festival in scotland next summer---if we can raise the money I hope to slide in as a free chaperone...God willing! I would see London & Scotland & tons of HS drama from all over the world---but each kid has to raise over $5000--anyone want to endow us??? LOL
Hugs Trish--I had irregular periods the last few years I was still cycling. The dark color indicates "old" blood & I was told by me PCP that it is not uncommon when you are peri-menopausal or going through full blown menopause. Talk to your doc about it & here's to a few days without all that gear!
Jane-- IF your doc is as big a jerk as you have posted here run from her! God knows there are enough out there who have compassion for us as PEOPLE we do not have to subject ourselves to ppl who think they are mini-gods! In her case TINY-Miniature-didn't-quite-make-the-cut-god is more like it!
Hugs all---scan results today & picking up the RV! Wish me luck on both counts! Be well & stay strong
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I called a new doctor this morning. He is a PCP with a sub-specialty in cardiology. He was both my parents PCP. My niece reminded me of him last night. He doesn't accept my insurance fully, but he only bills for what the insurance doesn't pay. It doesn't matter. It's more important to get good care than worry about who accepts the insurance. He was great when I was taking care of my mother. I never got any of that HIPPA crap that he couldn't discuss this or that with me. If she needed a home visit, she got one. When I thought she needed Hospice, he arranged it. And he doesn't forget a thing. He always recognizes me and remembers both of my parents when he sees me. I don't know why I didn't think of him. My "old" PCP's nurse never returned my call yesterday and the office is closed today. I'm sorry, this kind of care for a cancer patient is not acceptable. I faxed a release today and told them to send my records to my new doctor by July 13, which is when I will see him.
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Good for you, Jane. There is no shortage of doctors out there and GOOD ones... Cancer patient or not, there is no excuse for being treated that way. Maybe you can work something out with your insurance for "out of network" doctor visits. Some have a deductible then they pay all. No harm in checking with them.
Hugs for all, THAT SUCKS as needed. Nancy
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