Member of the "6 Month Watchful Waiting Club", Unite!
Comments
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I can truly relate to your dilema regarding your son's college graduation. This past May was my son's college graduation and also my first scheduled MRI. I went back and forth over whether or not to do it before graduation. I finally came to the conclusion that if "all" I had at my last biopsy was ALH, it would not matter if I delayed my test a week or two and enjoyed myself. So that is exactly what I did--we went a week early, went to the beach, enjoyed graduation and came home to an "all clear" first MRI. Now looking forward to his wedding next month. I'll deal with November tests in November. In the end, you just have to do what puts your mind most at ease. Good luck to you
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Many thanks so the words of advice... I am thinking I will schedule the testing before the graduation, since at least in this case there could be a scenario where everything is fine and I get to go to the graduation with no worries. If I hold off until afterwards, I simply can't envision a scenario where I am not envisioning the worst-- I know myself too well.
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I'm about 2 months pass my 6 month mammo. Besides finding the time, I can't seem to call for an appointment. I'm thinking about waiting until December when the mri is due. Have any of you consider not doing the 6 month/screening?
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I had two every six month appts. and tests and they both came out clear so my BS put me back on a yearly program. She wanted me to see my GYN and her six months apart though, so someone is at least checking me every six months. I was very happy about it until recently I have developed bad pain in my left breast and I saw my GYN on Thursday and she can't see any reason for the pain. She told me to try and cut out cafeeine and take vitamin E. The cafeeine thing will not be easy for me but I am going to try the Vitamin E and see if it helps. If the pain still persists I guess I will go see my BS.
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So there is hope of being put back on the yearly schedule? I thought this 6 month thing was in perpetuity... I can't realistically decide if that would be a good thing or not.
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Evebarry - I am getting tired of the runaround. my last set of films and all of the paperwork was apparently lost in the mail due to some lab tech making a dumb decision to mail them to my old provider. Sometimes I think I will just roll the dice instead of going through this 6 month thing over and over. Also, all ofthe compression diagnostics - that's a lot of Xraying one particular area. What are the odds the xrays could end up causing the cancer? And the stress, can't be good for me. I have a 47% lifetime chance, which also means I have a 53% chance of no cancer.Maybe I will bury my head in the sand for a while.
HOWEVER, since you already fought the beast twice, I think you need to go in - I would think you are at higher risk of reoccurence (although not sure - is there a calculator for that kind of thing?)
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Carpediem, thanks for starting the post--obviously, many of us need to vent, ask questions, share, laugh, and cry through all this stress...
MVS, about the caffeine...If I can do it, I PROMISE you can do it!!! Last April (after reading one of carpediem's posts), I decided to take the plunge again...Four months later, I'm still going! Not completely caffeine free (unsweetened ice tea with lemon on these hot days...), but I drink mostly water now. This has been no small feat.............In April (and for a number of years) I was drinking AT LEAST three 24 oz. Cokes a day--and finishing any other bottles left around the house, because we all know they would go flat overnight if I didn't......................
How I did it: For a week, I took BC powders (crushed aspirin which actually has a bit of caffeine) a couple times a day to relieve the caffeine with drawl headache. I filled empty Coke bottles with water for about a week (maybe 2) and carried them around with me just as I had the actual Coke...Then I could replace it with a reusable water bottle when I didn't need the Coke bottle as a crutch...My 550+ plus kids at school also encouraged me..........It's a real problem if kids actually notice... I also kept a sealed bottle in my classroom, and gained strength each day I didn't open it........I have horrible allergies and need the fizz to help my throat, so I drank Schweepes Diet Tonic Water to get me through the spring and then into the summer (apparently some people react to quinine though)...Though I have cravings around PMS time, I steer away, just like any other craving that's bad for me...My DH hides the Cokes so it won't tempt me.........Yes, I'm a Cokaholic, and everyday is a struggle, but it's been worth it! (I joke, but for me it actually IS an addiction--it just happens to be legal and accepted...) Dropped some weight too!!!......Good luck!
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Thanks, I just don't see how I would go without my coffee in the morning. I think I could cut back but not cut it out completely. I drink Diet Pepsi during the day and after the 12 pack that I have now is gone I am going to get caffeine free Diet Pepsi and then just cut back on the coffee. Maybe I will try the half and half coffee that is haft decaf half regular. So far, I just got the vitamin E yesterday and I am still having the pain in the left breast. :-(
Good luck with your Coke addiction. I have no doubt that it is an addiction, believe me. Sounds like you are doing great!
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The radiologist told me that I should wait six months to see what happens, but my sister waited too long and she died from breast cancer. I made them go ahead and remove the lump - now awaiting the results of the biopsy. If the tumor is very small (can't be felt) and at a hard to reach spot, they have to do wire localization with either mammogram or ultrasound, in order for the surgeon to be able to find the tumor to remove it. I wanted the WL with ultrasound, but I would have had to wait longer to have the lump removed, so I allowed them to do it with mammogram. My advice to anyone faced with that decision - WAIT FOR THE ULTRASOUND PROCEDURE!!. It was the worst experience of my life. I ended up having my boob squeezed by that mammogram machine for almost 20 minutes total! I collapsed in tears at the end of the ordeal. There was no dignity left in me at all! I'm almost 58 yrs old, and I'm definitely going to have prophylactic bi-lateral mastectomy whether my tumor is cancer or not. Three sisters have had it - one died from it - and I just want the time bombs removed from my chest. I will NOT be having reconstruction either. This was my second biopsy, and I'm just wanting to end the pain and anxiety.
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rkyobo, you made me tear up in frustration for you! I am so sorry about all that you have already gone through with your family, and then you had to deal with more stress on top of that!
Do you have a BS or doctor to discuss procedure options with or was it just the radiologist? My BS works with me one on one to make decisions for care--and he has disagreed with the radiologists a few times now.
I hope the pain and anxiety will end soon too--let us hear the results!
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Well, I'm three months over my 6 month checkup, my annual mammogram. I can't seem to muster up what it takes to make the appointment. I've gotten several reminders and still I can't do it. I feel so done with breast cancer especially after the last surgery. Plus, I'm due for my annual physical...again I don't want to walk into a doctors office. In December my annual mri is due. The six month check up comes around so quickly. It must be really tiresome for all those ladies who have to just about live in the doctors office. I feel for them.
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Welcome to my world!!!! I feel like as soon as I am done with one 6 month follow up and whatever procedures need to be done, the next one is right around the corner. Had my 6 month/annual in April which necessitated a stereotactic biospy and then a lumpectomy. Just had my 8 week post-op follow up with the breast surgeon and scheduled my Oct/Nov 6 month follow up.
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Well I'm officially part of the 6 month club. I'm going to be having another MRI in November (original one was in May). From there the radiologist and surgeon will look at it and if there are any changes the suspect tissue will be removed.
I also have the option of having it removed anytime I want to get a full set of answers and make sure nothing nasty is hiding in it. I may do this in the new year (I need to save up some sick leave first). I don't like the cycle of stress going for an MRI every 6 months will cause me.0 -
I went in for my annual mammogram, actually 4 months overdue, and it seems as if I have cancer again. That's what the rad dr said. I don't know all what she saw except for sure irrigular califications in the same breast where I had 2 lumpectomies for high grade dcis. Hopefully its only dcis.
This is why we need our regular check ups and to remind one another to get them.
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Welcome Eluned!
Sorry to hear the news Evebarry--let us know when you hear more.
I'm thinking about you ladies tonight!
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I've been a member of the "6 month" club since Sept. 09..I am 32 yrs old when I was 29 I found a lump on my left breast which started all this fun..Turns out they are pretty sure the area of concern on left side is a fibroadenoma along with the 4 other lumps that have appeared since. But my right breast had a suspicious area which was non palapable. But after multiple 6mth check ups and a move from FL to NC a new BS finally led to a stereotactic bio on Friday..That came back as showing hyperplasia and sclerosing adenosis..So instead of being over the 6mth check ups I was told I will have to continue these checkups for at least 2 yrs..I'm still not sure what the hyperplasia and sclerosing adenosis mean but I will be doing my research as to find out why I still have to continue with these 6mth checkups..
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Here's a good link about hyperplasia:
sclerosing adenosis: A benign condition with excessive tissue growth in the lobules of the breast is sclerosing adenosis (National Cancer Institute 2001b). The condition frequently causes breast pain. Sclerosing adenosis may produce lumps and appears on a mammogram as a calcification (a small deposit of calcium) in breast tissue.
Both of these conditions are excessive growth of normal tissue. Because of that they want to check the stability of them. There is a very small increase in your risk of cancer.
I have both of these conditions in one breast, along with a fibroadenoma and a few other things.
Hope this helps!
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I believe the pathology report states as it being intraductal epithelial hyperplasia..I have been trying to read up on all of this..I think i'm just driving myself crazy and am worrying over absolutely nothing, I did get b9 results but still you always have to know what does all this mean..And thank you for the link Green Sea Turtle!
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Thanks for the info on hyperplasia. My doctor sent me to an oncologist who wanted me on Tamoxifen for ALH. So if it is atypical hyperplasia make sure you ask if that is an option. Let us know what your doctors say. As for me I didn't want to be part of the 6 month watch club and chose to have PBMX for my ALH - insurance covered it - I have been very happy as I was always so worried all the time.
Hugs, Valerie
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Ah, so glad I found this group! I've been looking over the boards for a spot that I would "fit in" to. I felt a hard lump three weeks ago (I'm 38 with bilateral breast implants), had my first mammo and an ultrasound. Lump didn't show up, but several other things did that they think are cysts. Had a surgical biopsy on 9/12 for the hard lump....turned out to the valve on my implant (thank goodness!). Had an MRI after that and am waiting for the final report. The prelim said bilateral breast cysts with one area on the right breast enhancing (at the surgical site). I'm a BIRADS 3 with six-month follow up.
This experience has been so emotional and scary....now I can feel two hard lumps on the right breast that they are saying are cysts (either a cluster or possibly complex). This is so disconcerting, especially since I had a rare type of salivary gland cancer when I was 23 (so I've already had something weird).
I am going to get a second opinion on the "wait and see" approach...they are saying my breasts are very dense.....anyone have the cysts issue? It's 3 weeks after the surgery and my right breast is still very tender....I thought it would have been healed by now.....any thoughts would be appreciated. The incision is about two inches long and she did take tissue at the valve site just in case, which came back negative. Thanks!
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I like what you said, "See you in 6 months" when it's actually 4 months after all the waiting for test results and more appointments. I was just thinking this today. Would it be 6 months from the lumpectomy or 6 months from the first mammo, because really that would only be in 4 months, we would start this all over again? I guess it all depends on how you look at it.
Wow, vmudrow, that is a long time of worrying about this stuff. I think I would do the same thing. It's sad to say, it's all you can think about, when I am not busy busy-ing myself. Those quiet moments alone with your own thoughts.
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Did anyone else have the same type of pain after a biopsy that I'm having?? Upper ab muscles on the right side super sore? I'm three weeks post surgical biopsy....thanks!! Also, I'm getting a second opinion on the MRI and follow-up schedule....
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So just wondering... I am coming up on my first 6 month check next month after a Dx of ADH and I pretty much think about the situation everyday and wonder "what if"? Worried about more ADH, and obviously, about the possibility of cancer down the road at some point. I just find that I am very preoccupied a good deal of the time, or even when I can distract myself, all this stuff is lurking, like a big black cloud hovering over my head. I used to freak out for annual mammos even before any of this started: lots of call backs, dense tissue, you all know how it goes. Just can't really figure out how to live with this risk in my life, although I realistically know that we all face risks, nothing is guaranteed, etc. The whole boob issue just has this tremendous power to completely unhinge me, and as the mammo date draws nearer, I feel myself getting crazier. I swear I have medical PTSD now. Even a trip to the dentist makes me incredibly anxious (and I have good teeth!)
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momoschki - I feel the same way, have my 1st mammo after having a lumpectomy in May for ALH and LCIS which also found ADH and I am anxious. I have been dealing with this every 6 month follow up for over 3 years and it gets draining after awhile. I never liked going to the doctor and now I feel like everytime I turn around something is going on......
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Janet M, I am also a Janet from NY! I was hoping to hear from those who are veterans of this process, such as yourself, that it gets easier over time... but alas. I simply am having a hard time imagining years and years of testing and poking around with doctors "watchfully waiting" to find cancer. Couldn't go down the PBMX road, as that was deemed too dire for my situation, but I often feel like this occupies a disproportionate part of my thoughts. Not cancer (for which I am highly grateful!), but not exactly "normal" either.
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wagongirl...I had my fourth biopsy yesterday. I felt like I had a lumpectomy. It was a little different. I have a one inch scar. I didn't realized that I would be cut. The doc inserted a vucuum needle, where the others were more of a needle. I woke up last night with the worse pain. I had to take 3 ibprofins. I feel better today but the breast is still pretty sore. So..perhaps it depends on what type of biopsy you have. The others brused more, but this one hurt more.
momoschki, I am now a verteran. My first dx was Dec. 2007. I've been going in every six months for a mammogramn or a mri. With the exception of the first year, I only did an annual mammo. I've been doing the waiting watching. I did not have rads or do I take tamaxofin. I hoped that careful screening would catch cater early enough and just cut if off. Well, now I've just had my fourth biopsy. I'm not a good reference for the watch and wait approach. Most would have just done away with the breast. But, all the options have risk and there is no gaurantee that anything is fool proof. Do, I bite the bullet and do away with my breast or do what I have been doing the last four years? That's the question before me now. Tomorrow or Thursday I will know the results of the biopsy. The scary part about the watch and wait approach is the risk of an Idc. But...if Ihad rads, I took could be dx with idc...even an mx although mx rarely have recurrences. It's what risks you are most comfortable with. None of the options are perfect.
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Thanks, Evebarry, for your comment. Mine was a surgical biopsy, so I was totally under, and the incision is about two inches long. I don't know how she obtained the tissue...I'm assuming she cut it out?? My breast is feeling better...there is still some numbness/chafing feeling to the left of the incision. It's the muscle pain that I didn't expect...where the pectoral muscle attaches to the sternum is so sore! My second opinion is booked for next Wednesday. I got the MRI images today and you can definitely see (what they tell me are) multiple cysts in both breasts. In the right breast, there looks to be a group of them, almost together like grapes on a vine. I just want to make sure it's safe to leave them all there, especially the larger looking cluster.
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wagongirl ....
My biopsy this week only was for dx purposes. If the tissue taken out is positive then I will have it surgically removed. I was just surprised how much was taken out for a biopsy.
Did they find any califications? Do they suspect cancer? I'm glad you're going for a second opinion. Let us know how it turns out.
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Evebarry: No, no calcifications & no one has said anything about it looking suspicious. I'm the one who is concerned that I have two palpable masses in the right bresat (that they are saying are cysts) that were not palpable 3 weeks ago. The other cysts in the right breast and all of them in the left breast, I cannot feel. My surgical biopsy came back negative from one site, but they didn't biopsy the other sites because they said they were so small (even though you can feel them!). Hence...the second opinion!!! I'll send you some good vibes for your biopsy results!!!! And I'll post again after my appointment that is one week from today.
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All,
I'm feeling like I could use some advice to help me cope for six more months. I just had my first six-month follow-up and I kind of thought I would get a resolution from the latest MRI but that didn't happen. This summer after three core needle biopsies and two FNA's on my lymph nodes I had an excisional biopsy (my third in the past 18 years) to remove two lumps. One was a papilloma and the other ALH. With all my biopsies and my sisters cancer last year (she is 43) plus the ALH the doctor advised Tamoxifen and 6-month follow-ups. I am 47.
The MRI last week didn't reveal any malignancy but there were more “enhancements” and “washout Kinetics” and other areas of new activity. I had kind of hoped that there wouldn't be anything to talk about at all so this has made me pretty anxious again. Oh, plus I am still having bloody nipple discharge so that is a daily reminder that things are off. (The Dr thinks it is ductal ectasia since nothing on the MRI suggested another papilloma) It's going to be a long six months if I spend every spare minute looking up terms and questions on the internet. I need some way to get this out of my head and just move on without thinking about this constantly. Does anyone have any good ideas for keeping this on the back burner? What are you ladies doing to cope? Other people don't seem to understand the stress. I feel like I am waiting to see what kind of cancer I get and how bad it is when they find it.
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