Member of the "6 Month Watchful Waiting Club", Unite!
Comments
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Hi Patty Dee, I'm surprised that they are recommending Aromasin for ADH. It's even a stretch to use Aromasin for DCIS. It's not yet FDA approved for DCIS. There is a fairly long history of use of tamoxifen and raloxiphene (Evista) for ADH. There was just an article this week in the New York Times about the benefits of tamoxifen and raloxiphene in high risk patients.
I was diagnosed with ADH 17 years ago, and had several excisional biopsies along the way. After the ADH surgical biopsy, I had two more surgical biopsies which were completely benign, and then last year was given the DCIS diagnosis. I never took an preventive hormonals during all those years., and luckily, and it took a long time, all I got was pure "DCIS". I'm even hedging on taking any hormonals now. It's a tough decision. I have also been recommended to take the Aromasin.
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Ballet, just last week I was offered Aromasin for LCIS as I can't take Evista or Tamox because of clotting risk. I was surprised too.
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Thanks, everyone. I really appreciate your feedback. I was told I could not take tamoxifen because of being post-menopausal. They are really pushing the Aromasin. For now, I am thinking I will pursue the healthiest lifestyle possible and "just say no to drugs". It just seems to make the most sense to me based on everything I've read and my understanding of the statistics. But will continue to research. Thanks for your help!
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PattyDee--It's still confusing what they are saying to you. For post-menopausal IDC, the recommended hormonal meds are aromatase inhibitors, of which Aromasin is one. For DCIS, the FDA approved medication for post-menopausal women is still Tamoxifen. For high risk women such as yourself, with ADH, the recommended drugs (pre or post-menopausal) are the Tamoxifen or the Raloxiphene (Evista). Sometimes they push the Raloxiphene because of the side effects of Tamox most likely to occur in older women, although still relatively rare, or so they say (deep vein thrombosis or endomedrial cancer). Some oncologists are now prescribing the Aromasin to post-menopausal women with DCIS, not because of the side effect profile of the Tamoxifen, but because it was found that the aromatase inhibitors work better in post-menopausal women with IDC, and, at least my oncologist, at a very well-known cancer center, feels that those findings will eventually extend to DCIS. Anyway, I never took anything for the ADH. I might take something for the DCIS, but I'm still concerned about the side effects. It's taking me a long time to reconcile this issue, but will be consulting with the breast surgeon next month.
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Hi PattyDee--I hope I got your scenario correctly. Did you have a diagnosis of ADH or DCIS? Your signature at the bottom says "stage 0, which implies DCIS".
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Ballet, when I was registering for participation on the discussion board, I was rather confused. It didn't allow me to choose ADH, and I didn't mean to select a stage. Some editing is in order. Sorry for the confusion! As for the Aromasin vs. tamoxifen, I am being told that exemestane is the drug of choice for prevention of breast cancer in post menopausal women. I think this recommendation comes from a June 2011 Study cited in the NEJM: http://www.nejm.org/doi/full/10.1056/NEJMoa1103507
Do you feel it is rash for me to consider prophylactic bilateral mastectomy? I feel like with ADH, the repeated stereotactic biopsies and open excisional biopsies are accomplishing the same thing one little bite at a time. Certainly with more expense and anxiety over the long run...
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Hi PattyDee, I did read the study you provided. Thank you. This was a study to determine if Exemestane was superior to placebo in a high risk population. I couldn't quite figure out why the DCIS patients treated with mastectomy were in that group, but I guess it was the risk of recurrence in the contralateral breast. Anyway, as I stated, Exemestane is not yet the standard of care for ADH, but it may become so due to side effects with Tamoxifen or Raloxiphene (or superiority of Exemestane). In the meantime, your oncologist (or treating physician) is still allowed to treat you with it.
Gosh, about the prophylactic mastectomy, I'm not the best one to ask. I didn't even opt for a single mastectomy for the breast with DCIS, and it would have been a natural choice for me, given that I had a large area of DCIS, requiring three lumpectomies. I went for a plastic surgery consult, and I couldn't have the autologous tissue transfer procedures (DIEP flap, etc.) and I didn't want to do implants. I was basically going to need to do it without reconstruction. So, the fact that I ultimately was able to get wide margins with lumpectomy was very pleasing.
About doing it for ADH, it's a matter of how much anxiety you would have with repeated surveillance. I think I stated that I had two surgeries after my first ADH surgery many years ago. Then this last year the stereotx biopsy showed ADH again. I told the surgeon that I'd be willing to keep coming back for biopsies, so long as all they found was ADH. Well it didn't turn out that way. For some reason, the ADH didn't scare me. I just figured that every few years they'd find something suspicious and then do a biopsy. I wouldn't do prophylactic surgery unless i were brca positive (which I am not), but many others on these boards do avail themselves of prophylactic surgery, and at least a couple of people who recently posted, found IDC when the prophy surgery pathology was done. It happens. It's definitely scary.
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Thank you, Ballet. Really appreciate your feedback. For now, I am going to wait until my next mammo in September to see what that reveals. If another biopsy is needed, I may go ahead with prophylactic mastectomy. I'm not sure I'm cut out for constant biopsies (that's a bit of a pun, huh?). The anxiety they create is so stressful, and my boob is starting to look a little battle weary after only two and a lumpectomy. Praying for wisdom in all of the decisions ahead. I do feel pretty strongly about NOT taking the exemestane, though, and keeping my bones strong and healthy.
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Hi,
I am back, after five months wonderful time, I am back for the diagnostic mammography. I got this five months relax, cause the radiologist was so kind that day, that he told me the good news right there last time, otherwise I may only have four months break. I have not made the appointment yet, really don't want to call, but must.
Anybody on the similar schedule?
Cathy
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Yes, six month rotating diagnostic mammo & MRI. They sure do roll around fast, don't they?
Go ahead & get it over with. Having it hanging over your head is almost as bad as waiting for results:)0 -
I'm with you ladies, my 6 month follow up is coming up soon and that unsettled feeling starts to creep in. I have also noticed a strange patch of skin on the other breast from where my biopsies and lumpectomy were. I have an appointment with my gynecologist a few weeks before my follow up so I going to ask him if it is something I should be concerned about. Seems like it never ends.
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So how do we all feel about Angelina Jolie's decision? Guess she is officially out of the 6 month club (guessing she was probably a member, based on high risk, et al!) I am proud of her, a sex symbol, to come out with the information. She obviously didn't have to - it's been kept secret for many months, and could have been kept from the public. I kind of feel like if she can/would do it, so can I? She's being slammed on other threads out here, so was curious how you all feel.
As for me, my 6 month check is quickly approaching. I still have spontaneous discharge, but the last ultrasound and mammo were clear so letting it go for now. Nothing is changing in terms of frequency, color, etc al so "whatever" applies, I don't need more drama in my life right now....
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Hey there sisters!
May I join! This thread looks great. I am definitely back in the club. I had a rare form of cancer in L breast -- sx 2008 -- and then no chemo. They say this cancer doesn't respond to chemo... so I have been on close watch -- and then I had an idiot dr who took me off of it -- and then I got an 11cm mass this year, same breast. Benign. But now that breast looks like a mess. And now I'm back in the club, which is supposed to be six months, but which is actually six to eight weeks, by the time you get everything done. Next up: endometrial biopsy.
So glad to have this thread!
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I can't for the life of me think why anyone should slam A. Jolie for the decision she's made. It's a personal one, based on her own discussions with her docs, and it was right for her. I am leaning very much in the direction of prophylactic bilateral mastectomy based on everything I am reading about ongoing followups and more biopsies and the chances of getting cancer becoming greater with each passing year, each new "suspicious area". I have no family history, and I don't carry the BRCA gene as far as I know, but I'm told breast cancer is a pretty good possiblity for me if I live long enough. I hope if I elect to have the surgery, without a diagnosis of cancer, that others would support that decison and understand the reasons why I've made it. But if they do not, then so be it. I'll know I did what I thought was right, and I'll sleep better at night!
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My appointment is May 24, pray for myself. Yesterday I dined with a friend, then I found she is also a BS survivor, it was detected very early when she went for routine screening, she already passed five years peaceful timing, and I also learned from her, the treatment is not that long, no chemo for her case. Checkup is really necessary for us, though it brings us worries.
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I'm not one that really cares for Angelina Jolie personally or as an actor, etc... But my hat is off to her for doing what she felt to be the best course of action for her. I think it is very brave of her and to bring this to the attention of everyone, especially Hollywood. For reason outside of my control, I have been thinking of the same course. It's hard to try and reason with yourself that you are high risk but no cancer...yet, to remove your breast BEFORE it happens. People do think you are nuts but then again it makes sense to us. I'm still in the process of figuring it out for myself but, until then, I'm in great company with my 6 month gals!!
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Hope you all are hanging in there...been thinking about you lots! I've posted a few times in here, but haven't said too much. Anyway, I just went to another follow up appointment and my lump has grown 8 mm since my last digital mammo which was 1 year ago (actually an increase of 5 mm x n/a x 3 mm). They have not found anything like ADH, etc and my one and only biopsy came back with PASH. However they don't like that there were only small amounts of tissue sampled for the biopsy out of my breast mass which is now measuring 5.2 cm x 4.4 cm x 4.7 cm, and the fact that it is still growing. They want me to go back in 6 months for MRI screening.
I know that amount of growth may not be considered substantial, but as a D cup...how big will a BS let a mass get before surgical removal is recommended? I'm all for avoiding unnecessary surgery, but I do wonder how much tissue that would be if removal is ever required down the road.
I also just want to say that it is nice being able to post here and have other people understand. I have disclosed my breast issues to a couple of people close to me and it can be tough talking to them sometimes. I don't feel like I over react, but I would be lying if I said that I never think about what we've deemed 'the angry boob'.
Thanks.
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Hi Everyone;)
Glad to find this group, however, sad to read so many of us are here. I will try to be brief with my intro. At age 33? After my first daughter was born I developed a lump near my nipple. It popped out of no where. Noticed it while nursing. Long story short I had it removed from what I thought was a 'top doc' only to find out a year later he did not remove it:/ played that waiting game of waiting/watching then he finally "removed it" (Path report only stated fatty adipose tissue). After that year had passed I thought I was going crazy when I felt it again! Went to a local surgeon and he removed it! It was a fibroadenoma with some microcalcifications and ductal Ectasia. After that ordeal I really put it all behind me. Didn't even do BSE's.
my midwife had ordered my first mammo about 2-3 years ago but I had my third daughter and life got hectic.
So here I am. Now age 39 and finally got the courage to get my first mammo done in late April. Got a call back for diagnostic mammo and US. Went back and results were pretty inconclusive. They found an asymmetrical nodule only on one view but could not see it clearly on other views. The US showed a small cyst near that area but it couldn't confirm it was the same thing? Was instructed to go back in 6 months.
Just saw a BS and she is watching it. She actually found more cysts on us then the mammo reported. I go back in 3 months to see her. I asked about a MRI and she didn't feel it would be helpful due to the many false positives they can give...however, I was told I had heterogenously dense tissue. So ??? Should I request one? I also never knew my father so I am unaware of his family medical hx.
Trying not to be impatient but I just wish the report was a little more definitive.
Thanks for listening to my story!
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Michelle, insist on the MRI. I get them. Mom died of bc. It's the only test that gives me peace of mind. Seems like u need that. Good luck. Mary
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It won't be definitive with an MRI either. It won't just say there is a fibroid, etc. if your Doc is telling you to watch & wait you have less than a 2% chance of anything being cancer. Heterogenous is not extremely dense, it is normal, especially for your age.
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Became a member of the 6 mo waiting club after a callback on mammo which was done on Feb 25. They found suspected microcalcifications and did an immediate stereotactic biopsy. BIRAD 4 extremely dense breasts. The pathology came back usual ductal hyperplasia without atypia and was told to come back for a diagnostic mammo on left breast in 6 mo.
Three and a half weeks post biopsy I noticed a lump in another area of the left breast on a SBE. Called the gynocologist and went in for a clincal BE and he wanted to wait and watch it for a month. It included lymph nodes under the left breast and if you think of the breast as a clock it is at the 3 o'clock area and felt rather hard and not moveable. I came back a month later and it was then that he referred me to a breast surgeon. Had to wait a week to get an appointment with the breast surgeon. He did an ultrasound on the 15th of May felt the lump, but because of how dense my breasts are they couldn't distinguish if any shadows were that of the breast biopsy scar tissue or an actual new lump appearing. He asked me to wait until August for the 6 mo followup diagnostic mammogram then followup with him in September. I've continued to do monthly SBE. I will be quite frank to say I'm not very good at playing any waiting game. I've already called the Women's Center to schedule the follow up mammogram which won't be until August 29. Now I noticed my left nipple is starting to retract inwards. It's like that when I remove my bra when standing as well as when I lay down. I'm trying not to worry about these changes and I've advised my gyneocologist about the changes with my left breast and the nipple. I am thinking more and more about getting a PBMX in Sept regardless of what the diagnostics are from the followup mammogram on the 29th of August. I have one sister who is a 6 yr survivor of IDC and was on tamoxifen for 5 yrs and has been in remission since her surgery 6 yrs ago. She tested negative for the BRCA1 and BRCA2 genes. I have yet to be tested for either one. But with the BRIAD 4 dense breasts, and the family history I think I'd rather have peace of mind and just do a PBMX with reconstruction and not have to worry about it ever again. So until then I'm a member of the 6 mo waiting club :-P
Mom2Dot
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So just joined the 6 month wait and see club today after a second visit to the BS mind you he's a general surgeon that specializes in Breast conditions, anyway here is a little background
In Jan I found a lump went to the OB who ordered a mammo/US nothing seen but have extremely dense breasts, after weeks of the pain and symptoms not subsiding and new ones popping up he sent me off to this BS who said I had what looked like Fibrocystic breasts, only in the left, he said to take evening primrose and watch it for changes. the lumps didnt ever go away and the pains under my arms would come and go.
May 16th I had my 2nd ovary taken out and palced on a very low dose of estridiol, I had noticed a small lump under my left breast a week before my surgery but thought nothing of it, today its huge and bothersome when I wear a bra. pain in my under arms as well have come back
At todays appoinment the BS says that my firbrocystic has gotten worse and is one of the worst cases he has seen, prob due to the HR patch, when I asked if he could do a biposy just to be safe he said it would be hard due to how lumpy my breast are. I would really like to have ADH ruled out.
he recomended 6 month mammo checks and for me to stay on the low dose os estidiol, I go back to my OB on Thursday for a hormone check, will be telling him what the BS said and see what he says, he has asked me 4 times in the last month if I ever got the other lumps biposied, so I wonder if he would push for one.
Am I being unreasonable after the BS said I'm fine no need for a biopsy, and why do I only have fibrocystic in one breast is that common?
so now I am at a higher risk cause I am on HR therapy and only 39 so I will be on it for awhile, and having breasts that are hard to detect cancer in, should I push for a MRI?
we dont have any BC in my family that I am aware of, one great great grandma that had leukimia is the only cancer I know of
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I guess I have joined this group! I go see my bs next week after benign mammo, u/s, galactogram (that the breast care doc had to study for a good while before talking to me), and benign MRI at a different facility. I have very dense breasts and many yrs of breast issues. MRI doc said either wait 6 months or talk to surgeon about excision. (Bloody discharge continues).
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This is a great thread to have. Not sure if I will be in this group yet or not, still waiting for MRI results but since I have rare atyical cells in biopsy already, I will need at least one follow up biopsy most likely. Good luck to all here...
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I just joined the ladies in waiting in May...I have not been diagnosed either way yet...I'm very confused but hopefully will know more after my second opinion that my Dr asked me to get on July 2nd...
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Didn't mean to delete my last post sorry lol. I just joined the ladies in waiting in May...I have not been diagnosed either way yet...I'm very confused but hopefully will know more after my second opinion that my Dr asked me to get on July 2nd...
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Most of us on this thread are diagnosed with atypia or LCIS and alternate mammograms and MRIs every six months, or have received Birads 3 mammo or other imaging with instructions for repeat check in six months.
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Oh sorry if I posted in the wrong one. I thought waiting is waiting.
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Jushavinfun,
I agree. Twenty yrs of drs thinking I might have BC, and tons of tests after finding lumps, bumps, and bleeding....waiting is waiting, and it is frustrating. (Sounds like a rap)...0 -
Yes we should Maybe make up one..Thank you very much
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