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Bugs

Help! I was recently diagnosed with IDC in August of this year.

My initial diagnosis was just prior to the surgical oncologist acknowledging that a wire from a previous 'biopsy' that went wrong was still inside my breast. What was then a 1 cm lesion now presents as a 6 - 8 cm cancer.      

A subsequent MRI revealled that I had a 6 - 8 cm lesion presenting in both breast. I was given the option of bilateral masectomy. I was devestated.

Since I could not feel the lesion on the right breast, I found myself literally running from the said diagnosis in preference of finding a second and/or third opinion. My second opinion revealled nothing in the right breast despite my strong feeling that 'something' was actually present there: I had been told as much.... The doctors seemed to have issue with the initial MRI. Yet, a third opinion revealled something that both startled me as well as diminished my faith in what I have come to place my hope in: doctors and modern medicine; for my third opinion, in attacking the findings of the first MRI, revealled that there was nothing whatsoever presenting in my right breast in the form of a 6 - 8 cm mass. It was discovered then that the MRI individual, a radiologist by profession, had deliberately transposed my MRI to give the false positive of something being there AFTER I argued in defense of my referring physician that what I was sent in for a diagnostic mammogram for was the fact that the Doctor referring me stated emphatically that this was a solid mass with no definable boarders and that I would stand by her prognosis ..until proven otherwise. She, being a radiologist, I said, was literally stepping out of her boundaries in diagnosing my condition: She demanded that all I had was a 1.3 cm cyst and that she would be recommending that it be asperated else that I be seen in one year for follow-up evaluation only. This deception has taken some four months away from the proper diagnosis of my disease and its ultimate treatment. 

Further deception was this place telling me that there was no lymph node involvement in the left axilla. There was swelling and pain ...yet on ultrasound biopsy of the left breast at the surgeon's order, a rather large lymph node presented itself directly adjacent to the 6 - 8 cm mass. When I asked what this was, the radiologist conducting the biopsy stated, "That is a lymph node." When I asked if he was going to do a biopsy of the node as the doctor had requested in his referral notes, he stated, "No...we are not gonna touch that." Later I hear from my doctor that they say that there is NO lymph node involvement, of which they electronically place in my medical file.

 Also,  when the first MRI needed further evaluation on the right, due to what had presented itself, she herself volunteered to do the biopsy, thus taking another doctors place that afternoon.  She entered just under my right breast, and into the fasia tissue between the breast and the breast muscle, and removed tissue from there to present to the pathologist: a place that was certain to reveal nothing there, as the MRI was maliciously transposed and nothing would have been found anyway. 

My total lack of faith in the ability of this organization as a whole in unbiased treatment of my ailment is without warrant. I feel afraid for myself and my family....wondering if I have a fighting chance to beat this thing...at least for my husband and children's sake. My husband states that I should go with this organization, dispite  what had happened, and that the cancer is 'getting larger and spreading' and that I need systemic chemotherpy immediately, that he loves me and that he doesn't want to lese me. I think, with these people? What a wad of crock! Are you serious? Never the less here I am......yet still wary and undecided.

I have started neoadjuvant chemotherphy in an effort to, first of all, shrink the mass so as to try for breast conservation surgery at a later date. But, I do not know as of yet whether or not this my cancer is actually  responsive to this treatment: I just want to have this thing out as well as the enlarged lymph nodes as well, several now, that now present themselves in both left axilla. 

The medical oncologist (chemo doctor) now states that the surgical oncologist has stated that he will be doing a lumpectomy sometime in December, as well as a lymph node dissection. I am hurting here....emotionally.

Any suggestions on how to navigate this rough terrain I now find myself and my family travelling upon will be much appreciated. Thank You.  

My dear, this is not an interactive board, like a conversation. We all check in now and then, so responses to your post may not be immediate.

Now, you are in the throws of shock and I am sure scared beyond your wildest imagination.

If you don't trust your medical care team, find another. I think we spend a lot a time second guessing ourselves. I found that this board was an excellent resource and the treatment that I received was compariable to others.

I did not have chemo before. I had a left mast, then chemo, then rads. I wonder if the lymph node you are speaking to is a mamm lymph node and not one under the arm?

please come back with other question you might have. We have other conversations that may be more specific to what you are going through. Like "going through treatement"..

Janis

I had chemo to shrink my mass, then had surgery and it was a lumpectomy, not a mastectomy. Write down your questions and collect copies of your reports (surgery, pathology, etc). You can do this (even tho you don't want to).



take care,

--Hattie

Hattie.

If I may ask....

Just how sizable was your mass?

You sound like you were in the same boat as I am...yet no long afraid. I know I am...

My suggestion is to immediately join a nearby Breast Cancer Support Group.  My Kaiser Support Group telling me about their experiences has helped to alleviate my worrying.  I have met a half dozen women who have survived more than 10 years!  I have hope.  My Group also gave me the strengths and weaknesses of various Oncologists, causing me to switch Oncologists.

I  e-mail questions to the appropriate physician.  For example with my Plastic Surgeon I asked how many Reconstructed Breasts with TRAM FLAPS he had done and how many were failures.   With his answers I felt much more confident going into the surgery the next day. I also do internet searches on parts of answers that are confusing.

My most recent enlightenment has been the discovery that Chemotherapy is an ART not a SCIENCE.

I hope this helps.  Take what you like and leave the rest.

Just checked in and saw your post.  I had my surgery (lump after neo adjuvant chemo) at the Joyce Keefer Breast Center, St. John's Hospital in Santa Monica, CA.  I still have my checks there (3 years later) and I think they are fantastic.  I don't know your insurance situation, etc, but I highly recommend them if you are looking for a surgeon.  If you want more specific info, let me know.  I know this is even further than Irvine, but might be worth it. I traveled there from Oregon and am so glad I did.

Annaanne 

April,

My insurance/treatment is with Kaiser of Southern California (San Diego, to be specific). I double-checked everything my oncologist recommended, and believe me, I received gold-standard treatment. They didn't scrimp on anything. I don't know if you're with Kaiser, but if so, I can't say enough good things about the treatment I received here in SD. My surgeon and onc were absolutely wonderful, and the nursing staff amazing. Perhaps you could use the SD facilities? Send me a PM if you need further info.

The drainage tubes are very simply. Mine were out within 7 days.I am not sure of her age or level of health. I had masectomy and full auxillary disection. once she has the surgery she will have so much more information. Stats-don't look at them there updated and don't help you with anything but stress.

Elaine,

A womans pronosis depends on many different factors. The main ones being: tumor size,number of positive lymph nodes,ER & Her2 status, tumor grade.

Since you are Her2+ I assume you have had Herceptin? Herceptin has greatly changed the stats for Her2+ woman. Best person to ask is your onc about your individual diagnosis

Elaine,

The is a whole Her2 forum on these boards...just scroll down the forums list to find. We are similar to diagnosis, only Im ER+ and my tumor was larger, 8cm. Both my onc and surgeon are optimistic about my future.

Your onc would be the one to listen to regarding your breast cancer. And yes...Her2 disease is most likely to recur in the first 2-3 years....after 3 years recurrence rates drop quite considerably.

Elaine, the Her2 forum is here-

http://community.breastcancer.org/forum/80

Hi Elaine,

You're not alone. I was diagnosed with an invisive ductal C stage 111c breast cancer in April 1,2009. I had 2 surgeries lumpectomy and masectomy. I just finished my 6 treatments of chemo and still have 8 more months to go for the Herciptin. I had 18 lymph nodes removed and 1 node under my arm was positive. I have met a lot of breast cancer patient but none what I have. I was so scared for my life. My Onc. didn't mention Neratinib drugs. I will ask, in my next visit. I was told that with out this Herciptin drugs with my prognosis, I have 3 months to live. I give a lot of credits to the researcher for their hard work.

Good luck Elaine

Hi Fame,

So glad to hear form you. I have reconstruction surgery on Thurs and not enough time to get all the things done I need too. We have lots to discuss. You will hear from me soon.Please keep the courage.

Peace, Elaine

Hi, I saw your post and I am wondering how you are doing? Your post is from a couple of years back and I have just been diagnosed with the same stage and am finishing up my treatment. I must admit I am feeling a little lost. Ever since the diagnosis my cancer team and I have been in emergency mode. Now that I have completed having my ovaries and tubes removed (no cancer found) chemotherapy followed by a double mastectomy (cancer only in rt breast but family history involving both breasts elected to remove both) and now radiation I am sort of wondering what to expect now. Do I just sit and wait for a reoccurance, can I feel confident that it won't come back? I feel I have done everything I can do at this point to rid myself of this disease but feel like as soon as I relax it will come back. What are your thoughts? I will be having reconstruction surgery as well and feel a little worried about that! Are you still out there?