Undiagnosed DCIS & LCIS

What is the name of your state? Georgia
This post is for Vizirn or others also knowledgable

Earlier this week I posted a rather fragmented chronology of my wifes ongoing problems with numerous erroneous radiological assessments of a lesion in her left breast discovered 5 years ago on a mammogram. After it being left alone for 5 years it changed only slightly in size and appearance on all subsequent mammograms and sonograms. Never was a biopsy recommended even after discovery of several areas in her right breast that were biopsied 5 weeks prior to surgery and came back as DCIS. At this time it seemed to me the mental focus was changed entirely to her right breast and still a biopsy for the left was not performed. Given my wife's very high risk factors I believe at some point a biopsy of her left breast should have been performed. She elected (pure luck) to have a mastectomy of her right breast because the DCIS was extensive**************in 3 different places, and a matching mastopexy of her left breast. Specifcally she asked for a mastectomy with reconstruction using her own stomach tissue. She was told that they could also do a mastopexy of her left breast to ensure as much cosmetic matching as possible. Still, nobody considered that the left breast might also contain DCIS. Only a day before surgery in pre-op with the plastic surgeon and with the concurrence of the breast surgeon was she asked if she would like to have the left breast lesion removed as well. She answered yes. If missing the diagnosis on the left breast wasn't bad enough, thereafter more nightmares began. After the surgery of both breasts were complete it seemed a further string of errors happened one after the other: After suffering with a clostridium infection for several weeks and not getting relief she went back to her regular doctor who took care of it within days and asked for the pathology and surgical reports of her breasts surgery. He was shocked and said he thought she should be on tamoxifen and taking radiation...then referred her to antoher Oncologist. To make a long story short the original surgeon got word 30 days later and called her back in immediately and said the left breast biopsy showed a grade III DCIS and he recommended another mastectomy ASAP. Don't believe he read the pathology report (my opinon only)
In the intervening time the hospital that held the specimen from the left breast was told to send it to another lab for further tests, it came back and was lost or something?. So as surgery neared there was something going on about a dispute between the surgeon, and the two labs as to whether it was invasive or not. In any case we knew anything about this until 3 days after the 2nd surgery when there it was on the last sentence of the pathology report stating the original report is ammended and to discard the invasive tumor statement. That report was dated and ammended 3 days after surgery! I was by this time collecting records, supporting my wife, encouraging a good attitude and assuring her all was okay. The fact is I have never been so scared and angry in my 37 years of marriage. I was fed up and requested that all pathology reports, all biopsies, and all specimens be sent out of state to a very reputable lab that specialized in breast cancer. They lost the written request for 2 weeks until I got face to face. The reputable lab agreed that there was no invasive carcinomas submitted, however they did find 3 more DCIS and a combo DCIS/LCIS in other quandrants of the left breast. Again thank God for my wifes lucky elections early on. Thank god she got sick from a hospital infection (clostridium difficle)(spell) or I'm not sure what would have happend. The last pathology report from the hospital said no residual DCIS was observed or something of that nature. All the way to the end weeks after the last surgery they didn't have it right. WE realize 7 lesions total of DCIS without spread is still a good prognosis, however my confidence level is really low here and I do know that there was never any lymph node testing whatsover on the left side so we're both trying to be postive yet are a long way from believing any prognosis given. Can we be blamed? The special referral biopsy in June from the orignal 5 year old lesion indicated from the little amateur research I have read that she would have been a super candidate for tamoxifen and radiation after a lumpectomy. She never had that chance and instead was subjected to 2 surgeries, and lost 2 breasts, and again I don't know how many more lesions they may have missed. She is undergoing physical therapy for the left side due to a muscle transplant and saline insert, and is getting headaches. She had a blood test last week and is being scheduled for a CT scan. One more thing, I'm really worried about this becasue she...believe it or not just had another menstrual cycle a few days. Any way we both believe that she has been harmed both physically and emotionally by this whole fiasco. Both her and I can get on with our lives, and we can excuse a little bit, but this too much to let slide. Do you think we have a case?

37 more hopefully.

This isn't a legal reply---
I'm so sorry for your wife's terrible experience -- I read your post because it relates to DCIS-
I've had experience relative to arguments on DCIS and you may want to read my post...
How did you find an outside pathologist and how long after surgery did your hospital agree to send it out??
Prayers for you and your wife.

State: Georgia
Numerous medical educational institutions will do a 2nd opinion on pathology samples. I looked them up on the internet. From the time I took the signed and dated request to the hospital records room it took 16 days to get it out. Apparently it had been misplaced, lost or hid. I made several phone calls and finally had to take all copies, authorization, and release directly to the pathology department. They sent it out the next day.

Thanks for your concern.

This is great news and I thank you for sharing it~

My biopsy has always been in the "gray" area when other dr's reviewed it . This may be the way to settle if it was indeed a bonafide reason to suggest a mastectomy.
Your wife is a fortunate woman to have such a supportive husband~
Bless you!

Hey Whyizzit:

I strongly recommend the Armed Forces Institue of Pathology. Just type in AFIP in a search engine. Contrary to popular belief most of their work in pathology is second opinions for civilian hospitals and educational and medical instituions. They are independent of political bickering and some of the unwritten codes and rules of the civiian medical community. They have no dog in the fight so to speak. They are about research and getting it right. A little known professional institution. I wish more of our ladies were aware of their service. Additionally, since they are not in it for profit, they are super reasonable on charges. Like any truly dedicated scientists and Doctors presented with a difficult and interesting challenge such a yours it will bring out the best in them. Check their web site out and write some nice letters. Specifically check out the drop down menu in the OBGYN section. Believe me if either of my daughters or grand daughters run into this curse....old Dad's gonna take charge until I get them to do the right thing. I won't see another lady in my family suffer through that.

Good luck

[vrzirn]

There is a Breast Institute in Denver that has some of the most experienced and competent radiologists in the country.

Thanks you guys!!

Each day brings some new ideas and strategies - I will definitely follow up on the lab/radiologist info
Thing is-- all this has brought me to my financial knees - ended up on SSI and Medical - and now - I've reached retirement age and can't work or lose the aid..... Believe it or not - I'm in excellent health! And-- God has been fortunate in that I look more like 50 than how ancient I really am! hahah

So- hopefully this won't be very expensive - I did do research on how to request my slides - but time is marching and am hoping they will still be available...

I've been waiting here on the board for a "legal" standpoint - but so far nothing -
Aren't there supposed to be attorneys doing the Q/A???

Georgia:
Whyizzit

Not legal advice, but I believe the law is forever or somewhere close to it in regards to the requirement to save pathological biopsies and specimens. Seems I read that somewhere. Believe they have to put them in a preserving compound (formalin) and then storage.

You go whyizzit!

[vrzirn]

I do not believe you have any legal case in which you will prevail.
I suggest you get an opinion from a medical-malpractice attorney.

Georgia

For Virzin:

Thanks for your honesty. I don't either unless something more serious happens, and I pray that it doesn't. She is scheduled for a CT scan because of some unusual and persistent headaches. If she comes out of this okay, I could care less about a lawsuit but I will keep a diary none the less. I'll make contact with an attorney and see where it goes. I couldn't possibly chronical it all in here.
As I said to Whyizzit**************.valuable information for my adult daughters with children.

Husband37 more years