Member of the "6 Month Watchful Waiting Club", Unite!
Comments
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Hey everyone, I got the letter from my insurance company approving my MRI. So one week from today. Am very anxious about it!
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Hi mdoak! I am glad your MRI was approved, hurdle #1!!
I am anxious about my July 1st appt, too. I am keeping super busy and pushing it out of my mind, but it seems I feel everything going on in my breast like twinges, pain, whatever. Ah, the mind can really take over, can't it?! So I sat perfectly still in silence this morning and I took an assessment of what hurt in my body at that time. Let's see, I have lower back pain (too much time at the computer), my ankle hurts a little because I twisted it yesterday, my left eye has a little pain because I messed up putting my contacts in. So I tried not to hyperfocus what I feel in my breast - the fact is that I am getting old! Stuff is going to move around, ache and whatever. At any given time, our bodies are going through something or other. Trying not to hyperfocus all of my concerns to one place. I think if I drew a picture of myself all of my body parts would be very small except for my left breast, like a picasso thing! LOL!
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Carpediem:
Hi there. I am going tomorrow for an ultrasound and xray of my left armpit and axillae of my left breast because the nuisance of this tingling is painful. They call it 'parathesia" when this tingling occurs but most studies say it occurs after breat cancer surgery???????? Or it could be lymphodema or even Lupus. I finally got to talk to my PD that the ductogram was done on the wrong duct, but don't know what's up with that except to come back in 3 months. I am so tired of presenting symptoms to be told to come back, come back, and then left to deal with the pain and anxiety on my own.
When you had ? nipple discharge and the symptoms you had, how long for action and what were the benefits?
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I posted earlier that I'm due for my six month screening. I'm really struggling with making an appointment. Plus I don't know if I should go through an oncologist, my primary care physican or breast surger, which I prefer not to. I wonder if it would be enough to do a annual screening. The six month screening comes around so quickly. Nothing is probably there. To mention that my left breast where I had a lumpectomy March 8th still hurts. I think there a slight breast lymphedema because everyonce in awhile it swells. I have to remember to do the lymph drainage. What a bother.
But...I'm happy I still have my breast. Watchful waiting is worth the price of having my breast as I'm well aware no matter what choice you make there is watchful waiting...just prefer my choice
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Eve - I will see my onc every 6 months as I'm still having Zometa. He sees my DH annually (previous bowel cancer with mets). After the zometa is finished I do expect him to call me back every year. I expect to see the surgeon every 6 months - she ordered the mammos etc.
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I am waiting to see my surgeon ( who by the way has not called me with my results, I only got them because I work for my primary care dr) and I am also booking a second opinion.Before My appointments I would like to ask those of you who have had a masectomy over the 6 month wait and see game, what led you to your choice? What were your dx previously? So far I have PASH and just had my second biopsy on the same site. Saw my gyn today who was not happy that this is the second biopsy on the same site. I have always said that I am not dying for a pair of boobs but I also do not want to seem like a drama queen either. I was adopted at birth so I have no family history. I know a lot of what I do will depend on my appointments but I would like others opinions. I do not think ,well I KNOW that mentally I cannot handle the 6 month wait game. We did that for a while and then my surgeon said that since I had gone so long without any changes that he did not need to see me back and I could wait a year for my next mammo well that just ended with my second biopsy. The lump that I have where the PASH is is extremely painful and I have been living with that since 09. Anyway your opinions would be helpful, thanks
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Michelle, can he just remove the lump that's painful? It would seem drastic to consider a mastectomy for a benign condition. As far as I understand, PASH doesn't increase your chances of breast cancer either, does it? I'm sure you know more about it than I do.
It sounds like you also might want to consider another surgeon, if he's making you wait and wait like this for your results.
Melissa
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Michelle, I was so tired of the waiting, worrying, biopsies that I am no longer a member of the 6 month club. I decided to have PBMX when my last biopsy came back ALH - I have been very happy with the whole process and outcome. I dreaded those biopsies, worrying etc. Good luck and keep us posted - hugs Valerie
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Well, Ladies, count me in the 6 month club. I started this rollercoaster ride last year in Feb '10, with abnormal mammo. My Dr. got me in to see a top breast specialist at MD Anderson and have been treated there for a year now. I was dx with ADH (pre-cancer). I have a strong family history (mom dx @ 43) and 4 of her sisters, 3 with bc and tested positive for BRCA2, one with bc was negative for BRCA gene (but I am sure something else lurks in the shadows). And one BRCA2+ with no breast issues. I am 53 now and had my 2nd round of mammo, stereotactic biopsy because more calcification showed up which again was ADH. I go in Oct for my 2nd MRI. Dr did suggest tamoxifen but the more I read on that one the more it scares me. I am glad though that I have a place to turn to because all on here understand the rollercoaster of should I or should I wait. Hugs to all, Debbie
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With a diagnosis of ADH and three excisional biopsies later, my 'first' 6-month followup is in a couple weeks. Frankly, I am pretty nervous...I just don't have a good vibe. I am in my third month of taking Tamoxifen as a preventative, and I am less than happy about taking it. Best of wishes and luck to all of you in this waiting club. Linda
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Debbie and Linda - good luck to you with your upcoming tests!!
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Monday is MRI/spot mammo/ultrasound day, and I'm having trouble concentrating... a problem since I'm self-employed. No work, no get paid! The docs said I'm likely to need biopsies, since my breasts are so busy and this is my first MRI. I'll get those on Monday too, unless they have to be MRI guided. Not having to wait is a blessing, but it's making me more nervous for the appointment itself. The MRI is at 9am; we have to leave home at 7am to get there. It will be a long day. Must get work done today, must get work done today, must get work done today....
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I think I am joining the club!! B9 on my last biopsy!!! Now I need to have clinical exams twice a year and mammograms once a year. The surgeon didn't say I would need MRI's which is weird because I say one of the views of my breast yesterday and they are dense.. Very white as opposed to gray on the image, which I thought meant dense breast and the Surgeon said they were dense. Do I demand them? She claims the MRIs lead to unneeded biopsies... Okay but if cancer shows white, how the heck will they find it ever in my breast??
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My breast surgeon is not seeing her patients after two years. She suggest they just go to their primary doctor and only do a annual mammogram. About all of her patients had radiation and are on tamoxifen. I chose not to have rads or do I take cancer drugs such as tamoxifen. For that reason they suggested I be screened every six months. But...I think those who had radiation should be screen at least twice a year due to the scar tissue from rads. From what I've hearing at the doc's office they are encouraging for most bc women annual screening rather than the 6 month screenings. Have you heard anything like this?
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So, not sure that you would want me here either......
Back story: routine screening mammogram nl at age 32 (no one including me thought it was indicated except my parents b/c my father's sister had locally advanced bc at age 28 but I did it because they were harassing me so much), missed age 33 due to pregnancy. Finally got screened again after weaning infant son at age 34...you guessed it, BIRADS 3 for two tiny microcysts 3mm and 7mm, come back in 6 months.
Well, like some of you here that didn't sit too well with me so I self referred to a breast surgeon and finally was given a biopsy to "CYA" in the words of the surgeon. Lo and behold, DCIS!! A subsequent MRI revealed a much larger 8x9x5 cm area of multifocal multi centric ER PR negative DCIS that was mammogram occult.
Fast forward to now, just developed a 1.8 x 2cm lump in my free TRAM reconstruction. Mammogram and ultrasound and, you guessed it, BIRADS 3 again!!!!
Unbelievable! So, I am in the waiting area again for my appointment with the breast surgeon.
I tell my story not to scare people, as I know I am (thankfully) in the minority of being "on the bad side" of the 6 month waiting numbers, but more to encourage everyone to listen to their gut.
I think the subjective aspect of the BIRADS 3 category is really frightening. I got a left prophylactic MX because I lost faith that the radiologists at my NCI center would know what to do with the abnormalities they found.
Wishing for good health for all of you here. Thanks for letting me add my story. And positive thoughts for benign results would be much appreciated!!0 -
Unfortunately, I am part of this club also and I am starting to freak out because this is my check-up month. I have had two excisional bipsies of what was thought to be fibroadenomas. The first was, the second was a fibroadenoma with ADH. The second was done last year at this time. I went back in December for a mammo and my breast surgeon told me I would probably do a base line MRI at that time too. But, due to the fact that I was on crutches from knee surgery that I had in November she said lets wait until you are over your knee issues and I will see you in June. My mammo was clear at that time. I have been so busy with knee rehab and life in general that I just seem to push this issue out of my mind, but now that it is so close can't stop worrying and thinking about it. My surgeon wanted to put me on 5 year preventative tamoxifen but I chose to wait due to the knee surgery coming up and the danger of clots. I know that at this appt. she is going to want to get this started but I am just really dreading taking those drugs. I have another problem, endometriosis, which I take BC pills to keep under control. So, if I take the Tamox then I must stop taking the BC pills and will probably end up having to have a hysterectomy. I am just so tired of worrying about what to do and having surgeries!
I am praying for benign results for all of you on here who have tests coming up. It it nice to be able to vent on here, when I try to talk to my husband about this he gets pale and doesn't want to talk about it, just tells me everything will be fine.
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mv - when is your appointment?? I hope it goes well. I don't know how old you are or if children are part of your future plan, but I had a hysterectomy last year and pulled out all of my optional defective parts. I was taking provera, which feeds breast problems, having migraines, all sorts of problems. The hyster is the best thing I ever did!! No migraines, no periods, no cramps, nothing, yippee! Should have done it 10 years ago. Now, a decision has to be made with the hyster - and I left my ovaries, it was big gamble. I didn't want to start menopause early and have to start taking estrogen (again, feeding breast problems), so i rolled the dice...I have BC and ovarian in my family, so we'll see how that decision goes.
Keep us posted! I am also a tamoxifen candidate but kicked the can because my husband has been gone for a year. May start when he comes home, we'll see....
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I'm joining this club too. I was diagnosed with Phyllodes, a rare breast cancer, in March of this year and had the tumor removed. Luckily, it was low grade, so I'm on the watch and wait track now. However, when they went to widen the margins they found I also have atypia cells for the more common form of breast cancer. I started taking Tamoxefin towards the end of March. I went in to have them check the other breast after having a very tender cyst. Found out I had 8 cysts in that breast, 4 of which they did a needle biopsy, and luckily all were OK. Supposed to go in for my first 6 month follow up in September.
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My appt. is June 29th. Already dreading it with a passion. I am 43 and I am definitely done having kids. My oldest is going to college this fall. I just have had so many surgeries in the last few years that the last thing I wanted to do was go in for a hysterectomy. But, I have resigned myself to the fact that it will probably have to happen sooner rather than later. It is so easy to just take the BC pill every day and not having any periods or pain. But, taking that pill may be putting my breast health at risk too, although no one will say for sure if there is a correlation.
NCkick, how have you been tolerating the Tamoxifen so far? I hope everything will be all clear for you as well in Sept.
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When you look at the risk calculator (not to be taken as a perfect science, just something helpful to consider from lifestyle choices standpoint), birth control pills are a factor:
http://www.halls.md/breast/risk.htm
If you decide to have the hysterectomy, there is a great website called hystersisters where you can learn about the different types of procedures and figure out what is best for you and get good tips on what to take to the hospital and what to expect afterward. I had mine done vaginally and was back on my feet in a day or two. My neighbor had it done laproscopically and had all kinds of problems with popping stitches, etc. I was driving about week before her because I could tolerate the lap belt so well. Just food for thought.
Best of luck at your appt, mine is on the 1st and I dread it. I am also upset because I finally got into the clinic I wanted and got a great doc - now he is retiring and this the last time I will see him
I hate changing doctors and having to tell the story all over again.0 -
Carpe,
Thanks for the info. I know I will have to do something about this, it is really just not a good time. I have a daughter going into college in the fall, so needless to say money is tight. My OB has already told me that if I have a hysterectomy I would have to be cut on. They would use my C-section scar that has already been used 3 times now (2 kids and one ovary removal) so that is why I am hesitant, because my recovery from the ovary removal was not fun.
Will be thinking about you on your appointment day, sending hugs and prayers your way. That is a bummer that you will have to find a new doctor. :-(
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My appointment is tomorrow morning (6/21). I'm already exhausted from the anxiety. I feel like I am waiting for my boobs to try and kill me. I HATE this! It is so unfair that we have to give up days/weeks/months of our lives each year just dealing with the "wait and see". On the other hand, going a year without knowing what is going on scares the hell out me too! There is no winning in this horrible game.
I'm sorry for venting...I just had to let it out.
Shelle
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So sorry Shelle, but at least the waiting is almost over! I am hoping for a most non-eventful check-up for you. Let us know how it goes!
Melissa
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shelle - I know we spend way too much time worrying - but I for one don't know how to stop the worry. Hang in there and let us know how your appointment goes!
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Hello, I guess I am kinda in the watch/wait thing. But been going every three months. Last year went after having skin cancer (Dr. said go now???) I thought everything would be fine since it always had been. Mammogram showed calcification's and biop. path was adh. Went for wire guided but found another area so had to wait for another biop. path ended up hyperplasia for second area and had a third area that ended up nothing. Went back and had lumpectomy on adh /markers all were lost or disappeared. Months later started having single duct nipple bleeding (same badly behaved breast), Tested as blood but doing wait and see since it finally stopped after months. Now have hard mis shaped tender lump 10 o'clock on opposite side of same breast scar 5o'clock is from lumpectomy. I am 44 years old. I go soon for my one year recheck of the other side...do they look at both again? Am I in the right spot???0
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Sissy, you are in the right spot, for sure. I am 45 years old and have a bad breast, as well - had papillomas, spontaneous discharge and a ductal excision. Now 2 areas of increasing density (now the breast is almost 60% dense) and calcs. feeling weird burning sensation, twinges, and pulling at different times. Contemplating whether I would be better without it..... My other breast is crystal clear, perfect. Ugh.
My next appt is July 1st, here we go again. It took 2 months to get through all of the diagnostics after my Dec appt, and once again, Birads 3. Same thing everytime! Well I am feeling better going into this appointment - I have to say, after reading everything on this board, I feel empowered to make good decisions about my breast issues. I don't want it to ever control me, I was to stay in charge!
When is your appointment?
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Ladies, all of you are in my thoughts tonight!
Shelle3, you'll be in my thoughts tomorrow too! Let us hear...
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Hi carpediem, I am on a walk in anytime starting July1 for next mammogram...just have to show up. Hope the other one will be good. I never had dense breast before (not mentioned to me at least)so I am not even too sure what that is. I don't get too worked up anymore but don't like it in the back of my mind either. They mentioned a papilloma from ultrasound) but since the bleeding stopped said we will watch and see. Sometimes I think I wouldn't miss if it they took it, sometimes better then a peice at a time. I kinda know how you feel. For me, not much left now anyways. The new thing is a real fullness/heavy feeling on one side of one breast, kinda hard to describe.Different from the other side for sure. Sorry if I am all over...just trying to remember what the heck has happened so far
sometimes it feels like a blur.I really appreciate your reply! Thank you. I hope to learn what I can.
That's really good that you feel better with this go round. It's much better to feel like you have some control and know your options/choices.This feels like new teritory to me since I am use to dealing with Severe Crohn's (missing lots of guts...a peice at a time) but not too familiar with breast issues.
My very best to you.Please let us know how it goes.Cheers
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Hi! I am not on the 6 month watch club anymore. I had bilateral last April ... My mom 2 aunts and both sisters had breast cancer. Both aunts died from it.
Years prior to my diagnosis I kept asking my gyno if it would be wise to have masectomy because of my family history. He refused saying no no no.. I faithfully went for mammos each and every 6 months. Well dec. 2009 I had TN in left breast and 2 tumors in right breast.. go figure.
when I sat at the desk with the BS she said for me it was not a matter of it it was a matter of "when"...This made me angry. I knew I should of listened to my heart and went ahead and had the preventive masectomy. I would not of had to go through the chemo SE's and the everlasting affects it caused me. I now have neuropathy and lymphodema. I also would not of had to endure the loss of my hair. I could of also had saved my nipples and had a better reconstruction.
I come here today to give you my opinion what I would do now If I could change things. I am not suggesting that anyone take this route, but I wanted to share
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You sound so positive njbhwgirl! Cheers to you !
.Your opinion and experience will help many I am sure. Thank you a bunch for sharing.
Cheers..
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