Hospital lost my cancer tissue. Desperate for support

What would happen if you tell them you are suing them for negligence? 

What written changes are going to be made in procedure to guarantee that this doesn't happen again? What steps will be taken to figure out not how to manage your care with the least amount of pain? (Not even considering all of the legal ramifications)

My lung biopsy was completed at 4 pm on a Friday afternoon, after about 40 times of manipulating the biopsy needle. When the tech came into the surgical suite to pick up the sample, I said to him, you make sure that sample goes directly to the pathologist and gets logged in! I see your name Tag. I know he thought I was high on drugs but I was dead serious....no pun intended!

• Please, please consult an attorney! If not for yourself, please do it to protect your daughter! The uncertainty of this disease is stressful enough WITH the knowledge that you and your doctors have done everything possible to "cure" you. The information contained in that missing tissue is a huge piece of the treatment puzzle. I had my original breast tissue biopsy analyzed by two pathologists. Both agreed HER2+++. But, one reported ER-, no need for estrogen blocking. The other ER+ at 5%, estrogen blocking suggested. After neoadjuvent chemotherapy, all that remained of the 4.5cm multi-focal tumor was 4mm. The pathology of that tissue was HER2+++, ER+ at 80%, estrogen blocking required. It's a crafty, shifty, nasty, disease. Your doctors need the information in that tissue!

Joy-Anna, what a terrible experience for you. Do allow yourself to rage and cry at this latest blow. I hope you can find a therapist, family member, or friend who will support you in person, as well as the members here. Trying to put myself in your place, I think when I was ready I would ask the doctors, "What could the path report have told you, and how would that have affected treatment recommendations? Best- and worst-case scenarios and percent chance of each? I suppose additional chemo and/or rads were to be considered, and now this decision must be made without a path report? If blood tests and scans will help you feel more secure, they owe you blood tests and scans. They also owe you a fast-track appointment to whatever high-powered cancer center you want to visit for an expert second opinion on what to do from here. And a free massage and anything else to give you a break and help you deal with this situation. I hope this does not sound insensitive because I mean it as a way to help deal with the loss of your path report: None of us who have had bc get to know we are cancer-free. We all figure out as best we can how to live with uncertainty, even when there is a path report. I'm so sorry this happened to you. You will get through this and continue to be there for your beautiful daughter.

JoyAnna, I'm sorry to read about your issues. What you can also do in the interim:

1) Visit your hospital Pathology Dept.to withdraw your biopsy slides. Say you need the biopsy slides to obtain 2nd & 3rd opinions. Keep your biopsy slides at home for safekeeping, before those slides conveniently "disappear" also.

2) Meet with your Pathology lab and ask them to walk you through their "process" to educate and arm yourself.

3) Consider seeking 2nd opinions on the pathology of your earlier biopsy slides. Also ask the 2nd opinion pathology lab for their process, for comparison.

4) Speak to plastic surgeons at "outside" hospitals to inquire about the possibility of securing any additionsl tissue samples during reconstruction, to ascertain clean margins and to reverse the tissue sampling process.

The steps above may or may not help your cause, but it's worth a try. Good luck. Hugs!

Joy-Anna:

I am so sorry. I have no relevant experience or knowledge about this situation.

An attorney should be able to advise you about how best to ensure preservation of all existing patient medical records, all imaging, any pathology slides or tissue blocks, samples in any state of processing, and all associated hospital record-keeping, etcetera, as well as how to regain access to any that you are entitled to.

This statement: "that the tissue either never made it to the lab or the lab lost the tissue" is vague and indefinite, on its face does not reflect systematic or intelligent follow-up, and is not an adequate statement of the fate of your samples.

In connection with your care, please be sure to ask what could be done in the short-term, for example with the assistance of an independent patient advocate and/or attorney whose duty is to you, towards determining:

(a) what labeling, record-keeping, and tracking practices are used at this facility and which of these procedures was actually applied to your samples based on hospital records

(b) what does the information from (a) indicate about the possible labeling, forwarding, handling, possible current location, and/or disposition of your samples

(c) in view of (b), what procedures have been used to search for your samples

(d) were the procedures used in (c) to search for your samples appropriately thorough and exhaustive, such that it is essentially certain that the samples are in fact irretrievably lost or compromised (with no possibility of later discovery)

For example, can it be determined whether the tissues actually arrived in the lab? If so, were they frozen, but mis-filed or discarded in error? If frozen and mis-filed, could a suitable search still locate them in time for the information to inform your care? You should be entitled to more exact information about the status of the samples.

Perhaps an attorney can assist you in this regard and/or help you engage an independent patient advocate. Perhaps new providers and patient advocates at a wholly independent institution can assist you or direct you to appropriate assistance. Perhaps the State Attorney General's office can provide some advice or assistance about finding a patient advocate to help you definitively determine the current status of your samples.

I send you my best.

BarredOwl

Good luck, its an appalling error on their part, make them pay.....and get the treatment you deserve

Don't be surprised if the hospital is unwilling to meet with you once they hear that you have legal counsel. They are hoping this will all go away quietly

Joy-Anna, how did your meeting with the oncologist go? I'm thinking of you.

It sounds like you are thinking clearly about this, Joy-Anna. I love that you have been able to enjoy your daughter's swim meet and sleepover in spite of it all. Those relationships and experiences are the reasons we do the treatment, right?