Tired and Scared

karen5862 · Guest

This is the first time I am posting to any website; I really need to talk to someone. The last 15 months for me have been hell. I am 42 years old. In July 2003 my mammogram showed microcalcifications in the left breast. I had a sterotactic biopsy in August 2003. The sterotactic showed atypical ductal hyperplasia, so I had a needle localization biopsy of the left breast in September 2003. The excisional biopsy showed Proliferative fibrocystic changes including radial scar with florid and focal atypical ductal epithelial hyperplasia. My local hospital sent the slides to the Mayo clinic who said "They consider the findings diagnostic of atypical ductal hyperplasia and agree that they fall short of those required for a confident diagnosis of DCIS (Ductal Carcinoma In situ). I wasn't very re-assured by the statement that the findings simply fell short of a confident diagnosis of cancer. I was referred to an oncologist and went on Tamoxifen right away. I was scheduled for a follow-up mammogram in 6 months. One month before my scheduled follow-up, I found a lump in my right breast. I had the mammogram and it didn't show anything, but the lump was there and could be felt by my surgeon. He recommended another excisional biopsy which I had done in March 2004. The biopsy showed focal intraductal epithelial hyuperplasia and sclerosing adenosis, ductal ectasia and cystic change - no malignancy or atypia. I went to a breast care center (surgical oncologist) for a second opinion and they concurred, recommending another 6 month follow-up with mammogram. Again, about one month before my scheduled mammogram, I found another lump in the right breast (same area as previous lump). The surgical oncologist did an ultrasound and identified a solid mass and recommended another biopsy. Three days before surgery, I found another lump right next to the one being removed. On October 18, 2004 I had my fourth biopsy on both lumps. The results were again a very close call, showing sclerosing and blunt duct adenosis with radial scar and focal atypical ductal hyperplasia, but not enough to call it DCIS. The surgeon recommended an MRI which I had this last Tuesday. The MRI was inconclusive. It showed numerous small scattered foci of enhancement diffusely distributed throughout both breasts. The areas are too small to characterize accurately. the MRI report goes on to say that these are most likely benign, but DCIS and LCIS cannot be excluded. My surgeon said that since the MRI is inconclusive, he would recommend a 6 month follow-up MRI. He also volunteered to send my latest biopsy out for a second opinion to the country's expert on breast cancer. so now I am waiting for the expert's opinion. I am very thankful that so far, no cancer has been diagnosed, but I feel like I have a time bomb waiting to go off in my chest. I am so tired of dealing with multiple surgeries and biopsies, and each one takes its toll on me psychologically and physically. I have had 4 biopsies in 13 months! I am considering having a prophylactic bilateral mastectomy. My surgeon is checking to see if my insurance would cover this procedure since no cancer has yet been found. Also, there is no history of BC in my family. If the expert comes back and says it is DCIS, my surgeon recommends that I have the bilateral mastectomy because there is so much atypia in both of my breasts. I know this sounds terrible, but I am hoping the expert says it is DCIS. I don't think I can face another biopsy. The lumps keep appearing so fast, I am doing a breast self exam nearly every week (sometimes every day). I am scared and confused and tired. SInce I don't technically have breast cancer, I don't feel like I can join a suppport group, but I need someone to talk to. My husband is trying to understand, but all he keeps saying is thank God it isn't cancer, don't worry. It is impossible not to worry. I know it is just a matter of time before I find another lump, and have to go through this again (my last biopsy showed tht the ADH involves posterior margin, meaning they didn't get all of it out, I think). Am I over reacting? I am having toruble sleeping, I can't get all this out of my mind. I would appreciate hearing from anyone who can relate. Thanks.

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Hi Karin,

I don't have any advice for you. I just wanted to offer you some support. You've been through an extremely stressful time and you are not overreacting. I don't blame you for wanting some good answers to your questions. I mean, 4 biopsies in 13 months......that's a LOT to endure! You're tired of lumps popping up all the time and you're living with the fear that eventually you will get a BC diagnosis.

Karin, you don't have to have BC to join one of the BC support groups. The ladies in these groups would welcome you to discuss your fears and get some good information, too. They've all been there/done that. One of them is www.breastcancer.org and another is http://messageboards.ivillage.com/iv-bhbreast Don't be shy - come on over!

I'm sure Dr. Leo will have some info when he gets here. In the meantime, know that we are all here for you.

Hugs,

Margie

karen5862 · Guest

Margie,

Thanks for the support and the hugs Smile

. You're right, I am thinking that a diagnosis of BC is inevitable, just a matter of time, based on my history. My surgeon said my lifetime risk of BC at this point is 40%, a little too high for my comfort, but at least I am staying on top of things, so that if this does become cancer, it will be caught early and will be cured. Thanks also for the links to the online support groups, I will definitely stop in. I think it is great that these types of forums exist, I am certainly finding comfort in just talking to others.

Karen

MuttsMom · Guest

HI Margie,
I'm not a doc, but I have to agree that a BC dx is more then likely going to happen. The surgeon knows you have "dïseased" breasts and I'm sure insurance would pay for you to have a double mastectomy. My nightmare started when I had just turned 43. In my case, there was no doubt. The mammogram missed a 5.5 cm tumor and my ultrasound was misread, but I was in a little rinky dink city then. I came back to where I'm living again and saw a surgeon and I was Stage III and 9+/16 nodes involved. I wanted the other breast removed also, just didn't want to take a chance of it going to the other breast and I had no problem getting that approved by the insurance company. I'd have a heart to heart with your surgeon or have him refer you to an oncologist about having them removed now before it is cancer and then you have to go through treatments.
I don't get on here much, so please e-mail me and let me know how things are going.
Prayers to you and this long waiting period you've had to endure. Waiting is so hard
Nancy

leo · Contributor Joined: 23 Sep 2004 Posts: 1575

Hello

Thanks for sharing your story with us. I hope we can be of help. About your problem(s), I think there is no question that your breast tissue tends to be abnormal, given several areas of atypia. There is no question that atypia is just a step away from cancer itself. I am sorry I can make no firm recommendations, but one of these areas will probably evolve to breast cancer if left alone. As someone mentioned above, please do talk to your doctor about this. Another thing you can do is to see a geneticist, so he/she can estimate your risk of developing BC, and his/her opinion will be very valuable if you would like to have a bilateral mastectomy, and your insurance will porbably do it with a geneticist's opinion.

good luck and please feel free to post here !

Leo
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Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

Limk · Guest

Karen,
You sound like me! I have a VERY similar experience. Mine included the same pathology results as well as a diagnosis of LCIS. I had 6 biopsies in 15 months; 2 excisional, 3 core and one FNA. Another concern expressed by my radiologist was that I had very dense breasts and mamograms were very difficult to read. (anotherwords not 100% foolproof) It seems as though with every mamogram, ultrasound. clinical exam or self exam; something new popped up without fail. I feel your pain and if you feel crary and scared, you earned the right to be! There is so much support out there for those poor souls who are diagnosed with a full blown cancer, (Lord knows they need it) but for those of us who believe we are waiting for the other shoe to drop, it sometimes feels as though we are left to twist in the wind. I wished that I could have found an "It's Almost Cancer" support group. Silly as that may sound, there are more and more people out there who will find themselves in our rocky shoes because of what we are finding out about genetic predispositions!

That aside, my surgeon from the get go always brought up the subject of mastectomy. Initially, I though he was a little aggressive in our conversations, but I eventually took him up on the offer. In addition to the problems mentioned above, ovarian cancer runs in my family, it was recommended by a genetic counselor that I have the test for the BRCA gene as they determined that I had a 23% chance of having a mutation. I also was on tamoxifin for about 1year after my LCIS diagnosis and continued to need biopsies becasue of abnormal findings despite the medication. Sadly, the clincher for pushing me towrd choosing mastectomy was that my health insurance via COBRA was running out. I was unable to secure new medical insurance because of my history. As a 43 year old mom of 4 young children, I realized that we could not take on the burden of out of pocket expenses for a "biopsy-of-the-month" or a subsequent cancer diagnosis & treatment. My post prophelactic bilateral mastectomy pathology report revealed a previously undetected 2.8 cm high grade tumor of DCIS.

I don't mean to blather on about myself, but I think that it might be a relief (in some fashion) to hear a similar story. It is FRUSTRATING to comb through general literature and personal accounts and NEVER being able to find something that you can relate to. I hope this helps. If you are curious about how I feel about my decision, I am SO happy with where I am now. It is great to be rid of that endless torture of yet another lump, test or whatever; I always wondered what was being missed.

I have a wonderful supprt team of doctors who I found to be just what I needed to assist in my decisions. I am confident that you will be able to accomplish this too! Just know that while you languish in this gray area, the ultimate decision about what action to take will have to come from you.

Best wishes & continued strength
PS. For those folks who think you should stop worrying, get on with it and say "Just thank God it isn't cancer"; don't get it. Please do not let them frustrate you or make you feel badly about your emotions; they have NO IDEA how toruted you can feel. Find a sensitive friend or professinal that you can talk to, it will help!

Guest · Posted: Wed Nov 10, 2004 8:15 am Post subject: Re: Tired and Scared

Leo,

Thanks for your reply. I am doing my best to stay on top of things, and I am very comfortable with my new doctors. Quick question, would they consider genetic counseling for me since I have no family history of breast or other cancer? My family history is somewhat limited in that my mom was severly disabled with emphysema and stopped getting mammograms at about age 55, and her younger sister died from emphysema at age 55, and I have no sisters, so there are not too many females to consider. I do have one surviving maternal aunt, who has never had any sign of breat cancer. I thought genetic testing was only offered to those with a strong family history?

ps
I heard yesterday that my insurance will cover a simple mastectomy, as long as my surgeon says it is medically necessary, so now I have a really big decision to make.

Karen

penelopez · Senior User Joined: 11 Oct 2004 Posts: 165

Hi Karen,

Hoping you're feeling a little better by talking to others.

Here is a great site for women who are concerned there MAY be a genetic link for BC in their family. It's also for women who think there MAY be a genetic predisposition. www.facingourrisk.org The woman who started it was dx at age 31 and frequently posts at www.breastcancer.org under the "high risk" thread. Here is some info. about it:

Here is a little about the site:

FORCE is a nonprofit organization for women who are at high risk of getting these cancers due to their family history and genetic status, and for members of families in which a BRCA mutation may be present. Our web site can be a helpful resource for anyone who knows she is at risk, who wonders whether she might be at risk, or who cares about the issues and concerns that we face.

Good luck and let us know how it goes!

Hugs,

Margie

Guest · Posted: Wed Nov 10, 2004 10:49 am Post subject: Re: Tired and Scared

Karen

One does not necessariiy need a family history to see a geneticist. If it is something that is thought to be genetic, you can seek their opinion.

regards,
Leo

karen · Guest

Hi,
I posted a few weeks ago under the subject "Tired and Scared". At that time my surgeon had decided to send my slides out to what he called the country's expert (Dr. Page at Vanderbilt Medical Center) for a second opinion. He sent all the slides from all my previous biopsies (4 in total). I just got a call yesterday from my surgeon that he got the report from Vanderbilt and that the news is very good - no cancer. He went on to say that the report concludes that no atypical cells were seen by Vanderbilt in any of the pathology slides, and he would recommend that I discontinue my Tamoxifen. The part that I am confused about is that I had three previous biopsies that were reviewed by three different labs (my local hospital, the Mayo Clinic and my new hospital), and all concluded there was focal and florid atypia in both the left and right breast biopsies, so much so that they had to rule out DCIS because it was such a close call (it took over two weeks to diagnose this was just atypia and not DCIS for 2 of my biopsies). Now the expert is saying that there is no atypia at all and now my doctor wants me off Tamoxifen. I don't understand how four different labs could look at the same slides and come up with such different conclusions. I am going to call my doctor on Monday to discuss, but who do I believe? Of course I want to believe the expert, but I feel like I am betting my life on just one doctor's opinion. If I go off Tamoxifen and he is wrong, then my chances of BC shoot up to over 65%, based on my previous history. Who's opinion do I believe at this point? I did question my local hospital's findings when all this started, simply because they do not specialize in breast cancer, and they sent my slides to the Mayo Clinic who agreed with their diagnosis (I would think the Mayo Clinic is considered an expert as well). So, the question is, now what do I do? Do I stay on Tamoxifen, even though I may not need it, or do I discontinue it and take the chance that the expert is right?

leo · Contributor Joined: 23 Sep 2004 Posts: 1575

Hello

Very tough situation. Pathology can be so difficult to interpret, the findings are so subtle, that different pathologists may have different views. I would suggest you sit down with your oncologist and see what he has to say. There is no right or wrong answer here, essentially the doctor who is managing your case may have to talk to all these consultants to see what they have to say...

regards,
Leo
_________________
Leonardo F - Webmaster Cancer Forums
Disclaimer: this information is for informational purposes only. It is not medical advice.

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