My diagnosis - very dramatic day - long post

[Beacon]

Thank you all so much for the extreme kindness! It makes me feel fantastic to hear the encouragement and support.

Especially you ladies who have actually had this diagnosis, or who have family members and friends with the same, I am so grateful for your information. LuLu, I am so happy to hear that you are doing well nine years after this diagnosis.

I did get a startling delivery of my dx, but I cannot blame my Ob/Gyn. It was a very unusual coincidence that I had my appointment just before she got my result and she got stuck telling me. Normally that would not be her job. It isn''t her field, of course, so I imagine the terrifying name of my problem led her to the conclusion. She was very kind and did her best. The nurse from her office even called my cell about 2 hours later just to see how I was doing and check on me. That was very, very sweet. I was happy to tell her that so far, things are not as dire as they appeared at first glance.

I had a scary night last night - the kind where you wake up at 5am all panicked.

Normal response I guess. Nights can be scary. My husband knows how to deal with me, so I was lucky and calmed down.

Today I feel energized. I realize that I personally have a lot in front of me, but I really feel a desire to help other women get ahead of breast cancer. I used to be too afraid to even talk about it much. Now I know that fear is an enemy and action can save lives. I want to get involved to help people.

 

[diamondseeker2006]

Beacon, I''ve been away much of the summer, but I wanted to say that I am glad the diagnosis was better than you first thought and I''ll be praying for a complete cure!

 

[scarleta]

Beacon:thanks for the update.I hope that you will be 100% fine in no time.Keeping you my dear friend in my prayers.

 

[Beacon]

Hi everyone. I had the MRI (not so fun, but I dealt). My radiologist does see areas where the contrast dye was absorbed in that same side we biopsied. So those places have some abnormality. She said that she did not see signs of invasive disease - I deeply pray she is right.
So those abnormal areas could be, more LCIS, DCIS or fibrocystic changes.

Does anyone know how accurate the MRI is for finding invasive disease?

I am pretty scared from time to time over here.

 

[Bia]

I''m sorry I can''t help answer any of your questions but please know I''m pulling for you beacon ((((((BIG HUGS))))))

please keep us updated...

 

[lulu]

Don''t be afraid. You''re on top of the situation and you''re being helped by people who know what they''re doing. Listen to their advice, but do your own research. The internet is fantastic.

 

[diamondseeker2006]

{{{hugs}}} I know nothing about MRI''s, but I can understand how scary this would be. Hopefully you''ll get some good news soon! Please keep us updated!

 

[Gailey]

I`ve only just seen this thread Beacon, but I wanted to send you good vibes that the news you receive will continue to be positive.

Stay strong, I think you have been brave beyond belief.

Hugs

 

[Beacon]

I met with the surgeon today. She is a nice person and minces no words.

Pretty much that MRI does not show classical cancer, in her opinion, but the proof will only be after we do an exisional biopsy, now scheduled 8/14. Until then, she cannot say what the abnormal spots on the MRI are showing.

She drew a circle on me where she would cut. Pretty big circle, folks! I am delighted to have any bad parts of me removed to where they can do me no harm, so I really welcome the surgery and it will be better when at least we know what we are dealing with.

I also realized that I just cannot be scared like this indefinitely. I am a natural worrier and so it is very challenging for me, but I have to try my best not to be very stressed. My job until we have the operation is to try and relax and have fun and stay unstressed as I can.

Lots of luck for that!!! Any great tips to reduce stress, even when you have a darned good reason to be stressed?

 

[Dancing Fire]

good luck Beacon !!

 

[chiquitapet]

Lots of dust your way for the excision, Beacon. It`ll feel good to be rid of it.

 

[Mara]

Beacon, sorry to hear about the situation AND the ob shouldn't have said anything if she wasn't sure. It sounds kinda like a big HMO (that maybe starts with the letter to the right of J ?!?!). Too many fingers in the pie basically.

Anyway, I am sure it is scary to have something like this be so unknown. In terms of worrying, it won't help you and stress definitely won't help your overall health. Just know you are doing everything you can do, and hopefully it will be enough. I usually tend to think that things happen with meaning, so potentially the early catch on this will save you in the future.

For stress relief, have you tried yoga? If you don't want the very relaxing slow yoga, try something like Bikram or Power Flow, they are both pretty challenging so they keep your mind occupied with the poses and what you are doing, but in the end you do feel purged and relaxed from the challenge. Also, can't beat a good massage or spa day. Best of luck!

 

[mrssalvo]

Beacon,
I just wanted to add my support. I am waiting on my own biopsy result for a scar like spot on my shoulder and it''s hard no to let your mind wander and to not be afraid. For me, during this time of waiting I have found listening to inspirational music and just trying to fill my mind with positive thoughts helps. it doesn''t make it go away entirely, but it''s harder to focus on the negative and the what if''s if you are putting good thoughts in you mind, if that makes sense. I have been focusing on just trying to have fun with my kids/family each day. they will be starting school soon and I don''t want to be debbie downer for their last days at home. Also, try to focus on the good news that the doctor said like the it not being classical cancer etc. I''ll send prayers your way for a successful surgery on the 14th and that you can at least find some peace.

 

[isaku5]

Beacon, I know it''s much easier to tell you to to relax until you know the exact nature of the lesion, than it is to be the woman waiting for the results. My cousin has had an unidentified lesion in her brain for almost three years. She has had countless MRI''s and consults, but no actual name given to the mass - very frustrating for her and her DH.

Anyway, ''good news'' vibes going out to beacon and mrssalvo.

 

[snlee]

Beacon, sending lots of good thoughts your way. I hope the procedure goes well and you receive some good news soon! Hugs.

 

[Phoenix]

Beacon,

Sending you lots of PS dust and HUGS and hope the procedure on the 14th goes well.

In the meantime, try some meditation. You can get some CD''s from the shops and/ or the internet.

Thinking of you.

 

[asscher_girl]

Beacon,
This must seem really scary right now but it sounds like you have some great doctors and you''ve been able to get super fast appointments/procedures done so hopefully all that combined will help get you through this. I think you''re one tough lady and I know you''ll get through this. I''m sending you lots of positive thoughts and dust!

As for stress relief, I too would recommend excercising - even just long walks in your neighborhood or swimming. And don''t forget about the upcoming GTG in Walnut Creek, diamonds and good friends will always help

Thinking of you.... please keep us updated through your journey

 

[Beacon]

Thank you all so much for your good wishes and stress relief ideas. I am starting some of them right now.

I was reading Deepak Chopra and he was saying fear is a very debilitating emotion that can send a person''s health downhill very fast. I am sure he is quite right! I still get scared though. It is called: fear of the unknown.

I read a quote from Shakespeare: "I weep to have what I fear to lose." That shows how silly - or at least useless - worry can be. When I catch myself at it I try and remember these things.

Thank you all so much for your kind words. This experience is not good but I am trying to find meaning in it and meaning is coming forth.

 

[lvnut]

Date: 7/30/2009 8:06:18 PM
Author: Beacon
Hi everyone. I had the MRI (not so fun, but I dealt). My radiologist does see areas where the contrast dye was absorbed in that same side we biopsied. So those places have some abnormality. She said that she did not see signs of invasive disease - I deeply pray she is right.
So those abnormal areas could be, more LCIS, DCIS or fibrocystic changes.

Does anyone know how accurate the MRI is for finding invasive disease?

I am pretty scared from time to time over here.

Hi Beacon - I refrained from posting on your biopsy post a while back because I have had breast cancer and didn''t want to scare you when everyone else was being reassuring! My story is so long - so I won''t bore you with all the details, but I will say that after my initial breast cancer diagnosis and treatment I was very worried about recurrence in the other breast. I asked my breast cancer surgeon about MRI''s and he said they find so much on MRI''s that it causes a lot of unnecessary biopsies.

Unfortunately, about a year after that I decided to have the testing for the breast cancer gene. I was considered an unlikely candidate to have the gene and was told I only had a 5-7% chance of having it. As it turns out I did have the gene. I then had lots of decisions to make - increased screening or prophylactic mastectomy. I chose the screening. So after my surgeon originally did not recommend doing breast MRI''s everything changed once I was gene positive. They are very accurate, but I don''t think that they can actually tell if it is invasive or not. I think you actually need a biopsy to find that out.

Although, interestingly enough, when I went for my original biopsy I asked the doctor when would we know if it was cancer. She then told me she knew it was cancer by the way it appeared on the mammogram. The biopsy was just to stage it. I was really surprised that they could tell it was cancer just by the appearance - something to do with "spaghetti-like strands."

Anyway, if I can answer anything else for you, please let me know. And I am so glad for you that it is not cancer, because I have had quite a long odyssey with my diagnosis, but I am still here!!!

 

[Beacon]

lvnut, you were brave and smart to check that cancer gene. I am considering doing the same.

My case is clearly tricky and I appreciate your candor. I think my radiologist is being optimistic and I know people who didn''t find out they had invasive disease til it was in pathology. This stuff is kind of like being a pilot: one is wisest to assume danger is present and always look for a place to put the plane down, if you had to.

I guess the short words are: prepare for the worst, but hope for the best. I am glad you are doing well and I appreciate any and all information you have to give.

Mary

 

[lvnut]

Beacon - I am very glad I did check for the gene. At the time of my diagnosis (March 2005 - age 40) I really didn''t fall into the typical categories that would suggest being gene positive so that''s why I didn''t do it at the time and my doctor did not feel it was necessary either. But at my six month check ups (I see both the breast cancer surgeon and oncologist twice a year) I would continually worry about recurrence. The one thing that put me in the category for testing was being diagnosed at a young age and I was unaware of my father''s medical history (long story - parents had nasty divorce when I was 2 years old and he died when I was 10 in a car accident). I had the test in September of 2007 and was shocked at the result. As it turns out, it came from my dad''s side of the family.

I originally opted for additional screening, but during my check up the the breast surgeon last July he gave me the much needed push to get the prophylactic mastectomy.

I am not sure where you live, but my doctors are excellent and very well regarded in their field. I''m sure you already know this, but please be sure to use a breast cancer surgeon and not a general surgeon. They are much more knowledgable when that is their only specialty.

My doctor and all of his staff are wonderful. I have had such a good experience with them (well as good as a breast cancer experience can go!) that I have volunteered that if they need me to talk to a breast cancer or breast reconstruction patient to help them out I will do it. I have actually become very good friends with one of them. She actually travelled from another state to use my doctor and the reconstructive surgeon. My husband and I also let them stay with us whenever they come to town. After having gone through all of this, I feel compelled to help others who are going through the same thing.

I also know of several people whose cancer ended up being more invasive than originally thought once pathology was done. I am amazed with all of the screening available that there can still be unpleasant surprises once the pathology is in.

I hope this is helpful for you and if I can answer any more questions or help you in any way, please feel free to ask me!

 

[Beacon]

Lvnut, I live in California. What state are you in? I am also considering BMX, which is often recommended with my condition (at least the condition that I know about so far).

I am open to all treatment that will help me live and get past this stuff. Indeed it is so tricky! I have had multi mammos (all digital), with magnifications, numerous ultrasounds, MRI, biopsy and we still don''t really know the total picture. So we will do more biopsy.

This stuff is so much more "grey area" than I originally thought. Confusing.

 

[lvnut]

Beacon - I live in Maryland. I was going to recommend my doctor, but I guess that''s out! I don''t know what BMX is - can you tell me more about it?

I had DCIS, but there was a small area of invasion into the breast tissue. I was originally scheduled for lumpectomy and radiation, but when we did a follow-up mammogram before I started radiation I had another area of microcalcifications. Then I had another lumpectomy - and another. Initially everything seemed so early stage and small (tumor was only 2.3 mm!) that it didn''t seem mastectomy would be necessary. But after I had the mastectomy there were cancerous cells throughout the breast. Amazing how your treatment changes and you find out more and more...

Although you don''t "officially" have cancer, there is a great book that I recommend to anyone going through this. It''s called Living Through Breast Cancer and was written by Carolyn M. Kaelin, M.D. She is a breast cancer surgeon who ironically ended up getting breast cancer in her 30''s. So it''s written from the perspective of a doctor and a patient and it is loaded with a lot of good information.

I would not recommend reading The Breast Book written by Dr. Susan Love. Someone recommended it right after my diagnosis and all it did was scare me to death! My husband actually hid the book from me when he saw how it affected me.

Please let me know if you have any more questions or if I can help in any way! I am getting ready to leave, but I will be thinking about you and will check in later.

 

[Beacon]

Lvnut, I grew up in Potomac, MD. Where/who is your doctor?

 

[lvnut]

Beacon - Both of my doctors are at Mercy Medical Center in Baltimore. Dr. Neil Friedman is the breast cancer surgeon and Dr. Bernard Chang is the reconstructive surgeon. They are both amazing doctors and very kind as well. Dr. Chang did an unbelievable job on my reconstruction. It''s certainly not an easy process, but the end result was worth it. I can actually still wear a bikini! Sounds kind of dumb, but that was a big deal for me. Especially because after my diagnosis I got online and was doing research and most of the reconstruction that I saw was AWFUL! I consider myself very lucky to have found such a great team of doctors.

 

[hlmr]

Just wanted to let you know I was thinking of you Beacon, and wishing you well during this next step.

 

[risingsun]

Beacon~you have been in my thoughts. I hope that the surgery goes well for you. Expect a truckload of dust to be delivered to your door. I will be checking this thread often.