Member of the "6 Month Watchful Waiting Club", Unite!
Comments
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maiyen,
My situation is exactly the same as yours, first six-month follow-up is scheduled next week. I will think of you, pray for both of us. If I can get another six month waiting result, I will be happy.
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Hi Maiyen and Cathy, sending both of you calming thoughts! I need to call tomorrow and make my next appointment. I dread it, but we need to stay on top of things. I've realized that I would never forgive myself if I skipped appointments and something popped up, so I need to just suck it up and do it. Like they say, put on the big girl panties!
Hugs to both of you!!!
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Hi ladies! I've also been part of club for about 10 years! First I had calcifications then few years later more calcifications followed by sugical biopsy showing ADH left breast in 2005. Decided not to take tamoxifen due to side affects & wanted to have more kids. Been having alternating mammos & MRI since then! Results were always normal til 2 weeks ago MRI found abnormal lump! biopsy showed ADH borderline DCIS! My Dr. Didn't tell me Borderline part. Saw it on pathology report! Now I'm freaking out! Isn't that early BC? I'm so tired of this rollercoaster! I've been a mess! Thinking about asking for dbl mastectomy or maybe I should take tamoxifen? What were side affects like for any of you ladies? Im waiting for my appointment with breast surgeon. They want to remove suspicious area! I'm so nervous
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LET, I can certainly sympathize with your anxiety. I told my Doc last month that that if I started having to have frequent biopsies I would be ready for a MX. The waiting is the worst. After your surgical biopsy you'll have a more definitive diagnosis. If in fact you do turn out to have DCIS it is considered stage 0 cancer.
I can't help on the side effects. I had a pulmonary embolism when I had ovarian cancer so they won't let me take them due to the clotting risks. From what I gather from other threads some women have few side effects.
Is your surgery scheduled yet?
Hugs, Melissa0 -
Thanks for the warm welcome! Cathy67, I appreciate the kind thoughts and will be hoping that you get a happy result next week. Carpediem1965, you are so right...we really do need to take charge and be proactive because it's our health and well-being. And please make an appointment tomorrow (or soon). Hug to you as well!
Hi LET1968, sorry that you are going through so much right now. Although I am unable to provide any input, I hope that you get all of your questions answered soon.
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See our IDs, 1965, 1967, 1968... are our 40s women easily categorized into this group? My appointment is next week, but I don't think the final result will come out very soon, waiting is terrible, especially when people are planning holidays.
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I'm in my 60's with LCIS and ADH. I read it's unusual for someone in their 60's to have LCIS. Had my lumpectomy in May 2012 and just put off my 6 month until after the Holidays. I was supposed to have my first mammo/us at the end of October, which was not quite 6 months, and will now have it at the end of December, with my onc appointment first week in January.
Cathy67, you're right about the age group, it's usually women in their 40's who have LCIS, if that's what you're referring to.
Wishing everyone the best with their checkups.
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LET, "My Dr. Didn't tell me Borderline part. Saw it on pathology report!"
OMG, this is so frustrating. I've had several instances of the mammo letter coming to the house with the cheery everything is great, see you in 6 months - but when I get the radiologist report myself it talks about increasing calcs, increasing areas of density, BIRAD 3, etc! Infuriating! Those of us in this category know that baselines and trends are important. Increasing anything is important information to know!
We are our own best advocates, so keep on top of everything, ladies!!
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I know DCIS is stage 0 bs, how about LCIS? My May mammography result is so simple that it did not mention any real stuff.
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I found a lump in August had mammogram/ultrasound in September followed by a biopsy in September with inconclusive results and was told I had two lumps then had a followup biopsy in October with inconclusive results again and was told I have three lumps one being a satellite mass. I got my radiology reports at least I had thought I got them all but now I know they are not sending me all of the reports because my doctor told me something different. I am seeing a different surgeon next week and hopefully will know more then.
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Cathy, the mammogram wouldn't tell you that you have LCIS. It is diagnosed by biopsy. It is considered a risk factor for breast cancer, but is not considered breast cancer. The majority of women with LCIS do NOT develop breast cancer. What is your diagnosis, or what are you being followed for?
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I only did mammography, the report just said, can not determine, but mostly like benigh. No any lumps found. Since I am in Canada, government insurance, so no chance to talk to the radiologist.
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Sisters!
I am back with good news! It is good this time, so I need to visit doctor in six months. This is the best result I've expected, and it is great that the doctor told me today directly, no further waiting needed.
I will be back here in six months, I will think of you, and pray for all of us.
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Hi -new here to the group.I am 41 years old - 2 years ago I was diagnosed with radial scar lesion (left breast) from needle biopsy. Saw breast surgeon who said it needed to be removed. It was benign - the pathology report says focal duct hyperplasia with atypia - which I was told is ADH. I was told this puts me at a higher risk and I should be monitored every 6 months. I have already had needle biopsy for large fibroadenoma and hammartoma in my right breast. Yesterday I go in my for 6 month check (which I am 5 months late for due to the death of my twin brother in June - so time got away from me) Anyway, the fibroadenoma and hammartoma in the right breast have not changed, but they found a lump in my left breast and did the needle biopsy right then and there. I received results a little while ago and was told it is a new fibroadenoma.
I guess I am here because I feel alone and scared everyday. My reports show I have extremely dense breast tissue and with the ADH higher risks. I also spent 6 years on fertility medications, which the doctors have told me I can no longer try to have a baby because they do want me on any hormones and have concerns if I did get pregnant that the increase in estrogen would cause a cancer. I have a family history of breast cancer though I am BRCA negative.
All day I had such a pit in my stomach waiting for this phone call thinking for sure they were going to tell me it was another radial scar or worse a cancer. I hate living like this.
The radiologist said to me ok we will see you next year but I don't think I am ready to go to yearly checks.
My breast surgeon relocated out of state and I guess I am looking for some advice. Should I meet with a breast surgeon to discuss my history and monitioring options. Is this something I should be discussing instead with my GYN??
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Hi all, I had my appointment last week and both lumps seem stable, but the radiologist doesn't like how large my biggest mass is so I am to go back in 6 months...she said that I'll probably be on a 2 year follow-up schedule. She said that even though my initial biopsy came back benign and it correlates with what is showing on US, there is so much of the tumor that wasn't tested so they don't feel comfortable just 'letting me go'. I was happy that the big mass only grew 2mm, but I'm bummed that this isn't completely over. I kind of wonder how big can this thing grow before someone wants to take it out or will it just stay inside forever? Ugh...boobs are such a pain!
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Hi, going back in six months is not a bad result, mine is the same. The doctor did not talk to me directly, just the nurse passed me the message, my concern is due to calcification.
I don't know what the mass you mean, why not just go for a surgery to remove it, even it is benigh.
I will be back next May, and you too.
Hug and enjoy the holiday season.
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Hi ladies,
PBIrish - I know it feels uncomfortable to go back to annual screenings. I personally have a love/hate relationship with the 6 month exams, I like that we're keeping on top of things, but of course dread the process and possible outcomes. You need to get with a team you trust, if they tell you 1 year, then go with it but closely monitor your breasts for any changes and go in if something changes?
Congrats on the "all clear" for 6 months for Cathy and others...well, you know what I mean! It will never be all clear for us. Make sure you drop by the hospital and pick up copies of the diagnostics report for your info and filing. I have procrastinated again on my appt, I am not sure I want to start this madness before the holidays, on the other hand, it would be nice to have it out of the way. I went in Dec for years and then shifted to January. More soon, hope you all enjoy the next few weeks - remember what the song says... "Just Breathe"! Hugs to all of you!
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carpediem,
You have been in this watch club for six years, your situation shall be very stable, don't worry, good news will come out as usual.
Enjoy thanksgiving holiday.
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Thanks, Cathy! Appreciate your words. Hope you enjoy your holiday season :-)
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Thanks for starting this thread, Carpediem1965.
I'm a sometimes-reluctant member of this club.I went thru needle biopsy, mri, exisional biopsy a few months ago and just went back for my 6 mo check this week with the breast surgeon, who is, thankfully, a dream to deal with, very caring and compassionate. There's still some scar tissue from the biopsy, so she wants me to return....in 6 months, of course.
I've lost over 30 lbs since the ADH diagnosis, and that's great, but she mentioned how important it is to lessen stress and anxiety and modify our lifestyle as women so we're doing a lot more self care and living life less reactively. NOT easy! I'm wondering of anyone else here has changed their emotional/mental/spiritual lifestyle?
I would love to hear what you're doing. I had a massage a couple of weeks ago (first time in 2 yrs) and the masseuse mentioned how much tension I had in my shoulder and neck. It was a real eye-opener.
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Jaye, I have lost about 15 lbs since my ADH DX, some of it intentionally, but most, I think, because anxiety just makes me lose my appetite. My doctor, too, always tells me how I am supposed to lessen my stress, but it is hard since being poked and prodded every six months is definitely stressful! One thing I have done is to really ramp up my exercise regimen, which I think helps, and I figure the workouts are good for me, even if the anxiety remains! I have also done the occasional massage. It is additionally stressful to go out with friends and feel like I have to be hypervigilant about what I eat, and every sip of wine now makes me feel worried and guilty. It is all quite a challenge...
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I lost over 50 lbs in the 6 months after my lumpectomy and hysterectomy. I started walking and watching what I eat. As for stress that level is still very high for me as I have a stressful job and life in general. I walk almost every day as a way to chill out and take my mind off of work and life in general. Having just been diagnosed with rheumatoid arthritis had added to my stress level. I try not to stress about the things that I have no control over and to enjoy the little things in life such as a glass of wine with friends.
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Got my first mamo since finishing treatment on 19th December, i keep thinking " i can't have anymore Cancer "
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I think I will need to join this group.
I went for my 1st mam on Oct 17th. Received a call the next day for a second look. Then a call for an ultrasound (where they took over 300 images!) I then went in for 3 ultrasound guided core biopsies and a stereotactic biopsy, and an aspiration. That was not a fun day. It took over 5 hours for the biopsies and my bruising was really bad for 2 weeks.
Results are so far that I have bilateral ALH. Microcalcifications at 1pm left. Aspiration was a complicated cyst, but fine and one was a fibroadnoma. I am heading for my 2nd opionion surgical consult in a few minutes today. I have been told that bilateral lumpectomies, scheduled for the 19th of Dec, and then 6 month wait if they are able to get clear margins. They did suggest Tamoxifen at the last consult with the breast surgeon.
My head is still spinning it has all happended so fast. There is no family history at all and I am only 41 so this was quite a shock to say the least.
I have left out a bunch as I do not have the large file in front of me, and am literally walking out the door. Wish me luck.
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cinvee,
Hugs! I also fell into this group since my first time mammograph screening. I just did my first six months followup last month, and got a temporary clear result that do check again in six months. But then I got a phone message from my breast surgeon that she needs to see me about last month's check, and appointment is Dec. 17, my goodness, I thought this time I was able to relax for holiday season.
I pray for you, this is what I can only do for you.
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cinvee and ali,
Just wanted to say that I'm thinking about you...hugs to you both!
Jaye,
This is a late response, but exercise helps me reduce stress. I've been running like crazy for the past 8 months and although it hurts (other issues), it helps me clear my mind when nothing else seems to work. I also try to relax by playing with my dog, doing yoga poses and listening to sounds like thunderstorms, ocean waves or whatever you prefer. Now this might sound kind of goofy, but I've even listened to youtube videos on relaxation, hypnosis for stress relief, etc and those have helped as well. Even if it's just temporary, it's nice to get a break from your own mind once in awhile.
Janet,
Sorry to hear about your recent RA diagnosis. I'm going through the rheumatology hoops right now trying to figure some things out. Not the easiest type of diagnosis to get!
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Hi everyone - Carpediem1965 told me about your group as I posted on newly dx site. So I decided to join. It is comforting to know what u r all thinking and that I am not alone (and completely crazy sometimes).
DX with ADH in March 2012 -excisional and surgical biopsies to follow. High risk protocol. 6th month MRI and US - abnormal and then normal respectively. Next 6th month check in March for mammo and repeat MRI. 42 and considering prophilactic mastectomy depending on results of next exam. Feel surrounded by BC and am thinking I need to be proactive, but many of u have been strong for years so maybe I can stick it out if I have benign results.
Thanks for sharing your stories!0 -
Hi Ha0103,
My situation is perhaps similar to yours,although I have a year's headstart on you (dx 3/11) and am older (55.) Was your ADH mulitfocal? Do you have a family history or other significant risk factors? When I was originally dx'ed, I was so terrified and so completely freaked out that I did discuss the possibility of prophylactic BMX with my BS, who insisted that in my case, it was overkill. Has someone been able to tell you what your overall risk % is? In my case, it was estimated to be 20-25%, which, while not good, still has the odds within my favor.
In the meantime, I have done a number of things that I hope have decreased my risk: I see an integrative oncologist who has me on numerous supplements, I have really cleaned up my diet and ramped up the exercise, cut way, way back on drinking, I have lost weight, and, most controversially, had a breast reduction, which the oncoplastic team at Weill Cornell sees as a viable risk reducing option for someone like me (high risk/formerly large breasted.) Not everyone in the medical community endorses this procedure, but there is a body of Canadian/European literature backing it up. Perhaps this could be an option for you to look into?
Still, yes, it is all incredibly nerve racking-- there is no getting around that. Six month checks still make me insane a good 6 weeks before it is time to go in.
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From Fox News Today: Should Breast Cancer Patients Skip the MRI Before Surgery?
http://www.foxnews.com/health/2012/12/10/should-breast-cancer-patients-skip-pre-op-mri/
Interesting, but a lot of situations aren't covered by what they are talking about, much less a condition like LCIS that does not show on mammograms.
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I'm wondering if anyone has considered dropping out of the "6 month watchful waiting club" altogether. I wonder how really necessary it is to have all these tests done so close together, especially since radiation can cause cancer too, especially with the breast being so squished and multiple films being taken. It seems like overkill to me. I had an LCIS/ADH diagnosis, with excisional biopsy.
Why aren't breast thermograms being done or recommended (no radiation, and not expensive), and the 3D ultrasounds called elastagraphy ultrasound, not many places do this test, but they should be available to all of us.
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