some people get all the luck-Not-

fullofbeans · 05-25-2010, 11:48 AM

Hi my dear ladies,

just wanted to give you a quick update, I will only state the fact as I need to keep my energy for my research and thinking,

-largest node 2.3*1.3 cm in breast lymph node
-right nodes involved (now got 4 palpable on the neck)
-left one suspicious and very likely to be cancer ultrasound to confirm tomorrow
-The crazy up thing about this is when they scanned me in march and last october the radiologist missed the growing breast lymph node, when they went back to compare CT scan they saw it. on the march scan it was 1.9x0.9 cm (and enlarged since oct) yes definitely a reportable size to be investigated!!!

Things could have been so different if someone had done their job, how can you missed reporting a 1.9x0.9cm on the same breast as the breast cancer...i.e. a local recurrence I guess some DCIS that developped over time.

gross negligence

I cannot bear talking about this anymore it is too, too, to ,too painful, it was almost more painful to know that than the cancer being back because if we had seen this on time things would have been sooooo different.

not sure what my plans are yet but all I know is that I cannot let gross negligence sucking up my energy. I cannot beleive this.

Love you all

AlaskaAngel · 05-25-2010, 12:18 PM

It is so hard, and the anger is so deep and consuming. I am so sorry that there was no way for you to know, or for you to "make" the responsible person work the way they should have worked for you, to help you. We are not just computerized images, but real people dealing with real consequences. I am hoping that your youth might provide some strength in giving you the protection of an immune system that is stronger in dealing with this, and even more so perhaps through the vaccine.

With thoughts of you,

AlaskaAngel

belle · 05-25-2010, 03:35 PM

Dear Fullofbeans,

I am very sorry to hear about your recurrence and do understand how you feel re Dr's negligence.

My mom's onc was sick at her 3 months checkup and there was another young guy substituting our Dr. He seemed shallow when palpating mom's breast, chest and lymphnodes. Just said we can go and come back if any symptoms occur. I did sense a moment of doubt in him when he was touching mom's axilla. Mom felt a bit offended by this cold reception and after 3 weeks noticed a lump on her chest herself. Had that substituteDr been more competent at detecting the nodes, mom wouldn't have had unpleasant symptoms now.

Unfortunately, such human factors put us at more risk and I guess we need to be more proactive ourselves at pushing the Drs for more checkups when we want them.

ElaineM · 05-25-2010, 03:35 PM

You have every right to be upset !!!! Allow yourself time for that.
Medical professionals are human beings and have all the ups and downs we all have. Do they need to do their jobs better? Definitely yes.
When you are ready fight like crazy to get back to NED.
Read all your test and scan reports. I don't know how it is in other countries, but in the United States every patient has a right to copies of all medical records and reports. Ask to look at the films. Question everything. Do not leave any stone unturned. Get as many opinions as you need. Look at all options.
Then sit down with the doctor you trust most and make a plan that will get you back to NED.
I wish the very best for you. You deserve it.

lkc Gumby · 05-25-2010, 04:47 PM

Dear FOB, I am so sorry to hear about this F***Up. However, you are right , keep focused on what can be done now. Save your energy for what's next. I know of so many stories like this. Anyway, sounds like it's a local recurrence, which can be much more manageable.
I'll keep you in my prayers.

BonnieR · 05-25-2010, 05:30 PM

I hear you FOB and share in your dismay. Something like this can make us feel so powerless. But, as you said, you need to focus your energy on whatever it takes to get things back on track. God bless and keep the faith.

chrisy · 05-25-2010, 06:21 PM

I understand the shock and anger, as a stage 0 person popping up 2 years later at stage IV - well, WTF?

For me, it was necessary to put that aside. Not easy, but necessary. Focus forward, that's the only thing you can impact.

You are right - you must not waste energy looking back and on "if only's". You're a good advocate for yourself - including traveling half a world away for the vaccine trial which may indeed have helped in a small way. Put that hat back on, and keep putting one foot in front of the other.

Elaine's right, you will be more vigilant. Keep moving forward. Channel that anger into your passion for life. And don't forget to breathe.

Suit up, my friend, and head into battle.

Jean · 05-25-2010, 07:43 PM

FOB,
I am upset to read your post. (we all are). I had learned first hand about checking two and three times.
Shame that there is not a system for a double read on all films....especially when one has already had a dx.
Something like two heads are better than one.

I understand how you feel even though my situaiton is so much different than yours. I was annoyed that it took so long for me to finally get herceptin. 10 months
after dx. fighting hard all the way with dr.

Dr. can be wrong make mistakes etc. not correct as this is serious. I am so very sorry, but being your smart self you realize that you must conserve your energy for the real issues at hand. Which you will do.

Please know you are in my thoughts and prayers.
Sending you much love,
jean

Ellie F · 05-26-2010, 03:48 AM

Hi Fob
Sorry to hear about this c**k up!! The good news seems to be that it's a local recurrence. I assume you have ensured they have gone over your ct scans with a fine toothcomb!
Just wanted to add that I hope they have checked your axillary nodes also!
Please let us know how it goes and what you decide.
Sending you positive thoughts.
Ellie

Pam P · 05-26-2010, 03:50 AM

FOB - I am also angry to hear this botched up scanning report delay in catching this ... could it have made a difference in treatment if you'd have known it sooner. That's one of those questions with no answer. Feel angry, yes. Let it consume you, no. Try to let that go and put that energy into fighting to get back to NED. We're all with you and cheering for you. Pam

tricia keegan · 05-26-2010, 06:32 AM

Hi FOB, I also am so sorry this happened but agree too, not to dwell on the terrible oversight and concentrate your energies into beating this.

ammebarb · 05-26-2010, 07:12 AM

FOB, I am so sorry you are in this situation and hope that soon there is a good plan for how to proceed. Wishing you NED again and sending you gentle hugs and a good dose of fighting spirit!

Barb A.

Ruth · 05-26-2010, 07:41 AM

FOB ~
Sorry to read this and wishing you strength and support as you move forward. I can understand the shock of all of this for you and how upsetting it must be. Please focus your energy on getting yourself back to NED. We are here for you and send hugs and positive thoughts.
Ruth

freyja · 05-26-2010, 08:07 AM

Yes, I agree, save your energy, and sock it to them when you can (or can hire someone to do it for you). This is scary for everyone. It happens too much. Once is too much. Focus on you and do whatever you have to do to stay as calm as possible. Don't hesitate to ask anyone for help, no matter how big or small.
Celeste

Lani · 05-26-2010, 08:35 AM

I think it is an attitudinal problem. At conferences I have been to I have encountered ill-informed and older doctors who are stuck in their ways or who don't keep up with the latest research who have this nihilistic approach ie, why find recurrence early because it makes no difference, this person will be dead in an average of two years anyway (and with her2+ recurrence and death occurred faster than the average they had been led to believe)

Well first of all this is a person with hopes and dreams and families and children/grandchildren/spouses to whom additional months and years are precious and in addition, within that added time there may be better treatments or even a cure.

Second of all, we will never get closer to that better treatment or cure if everyone adopted this nihilistic approach that they are all going to die anyway

One of the reasons breast cancer research is so much farther ahead than other researches is that noisy advocates have let the powers that be know that they were not going to sit still and just be told this is how it is and why make the effort?

The changing natural history of her2+ breast cancer since herceptin became widely available has certainly altered the way many look at her2+ patients.

Recent progress with her2+ breast cancer has thrown a monkeywrench at their negative thinking...some are slow to respond/wake up.

The lastest research seems to show that metastasis in breast cancer is a very early event. It is the "awakening " of the dormant micro- and nano-metastases that starts the phase where they proliferate into macrometastases that we call Stage IV disease. Whether this is due to angiogenic factors, inflammatory factors, both or neither is the subject of new and exciting research which seems to actually be getting places by small bits which continue to add up.

They are developing better and better ways to look for minimal residual disease (iron based nanoparticles fused to herceptin is in rodent trials I believe) and hopefully in the future finding the nano or micro mets or even chemical signs in the blood that they are still there will be enough to alter/start treatment and make a big difference in the "curability" of her2+ disease.

Let's hope the time you lost waiting for them to diagnose your enlarged nodes was time during which progress was made to allow you to get into just the right clinical trial you might need. Things are moving quickly and there will be many reports @ ASCO on her2+ breast cancer. I just published the Stage Ib/II results for TDM-1 + pertuzumab (unfortunately I think you had to fail LOTs of previous treatments to qualify for this one)

You are absolutely right to spend your energy researching the right direction to go rather than wasting your time in bitterness which will not get you anywhere but only drag you down.

Best of luck to you!

Ellie F · 05-26-2010, 09:11 AM

Lani
You put that so well. My original onc wanted to watch and wait and believed it didn't make any difference to the 2 year allocated time slot !
Fortunately thanks largely to you and others on this board I sought a second opinion from an onc at the top of his field. His response was so different and concentrated on keeping the disease load low and mopping up any cells still floating around. While he didn't make any promises what he did do was provide research based hope and a belief that if we stayed around there might just be a cure or at least long term strategy to manage this her 2 disease.
As you say her 2 is commanding a lot of research and soon I believe we will make further quantum jumps!

Hope springs eternal I believe.

Ellie

fullofbeans · 05-26-2010, 11:33 AM

Thank you all so much for your support this is great and Lani yes you are right this is what I think too..
What to do next i don't know..

Laurel · 05-26-2010, 07:04 PM

Hear! Hear! Lani, you have said it all for us. FOB, you battle on, Girl. The next great discovery may only be months away!

schoolteacher · 05-27-2010, 01:08 PM

FOB,

Hope you have heard something today. I am interested in hearing what the Tumor group from the University of Washington recommend.

Amelia

flynny · 05-27-2010, 07:10 PM

I just don't get it? How can someone who does this all day long not know what they are looking at?? My mother had a 2cm lesion in her brain and the radiologist noted it on the report but I believe it was overlooked because of all the 1-2mm lesions my mother had due to her MS. It over doubled in size within 5 months. It angers me to this day!! I too was also ignored by 2 doctors. I just don't get how someone can be so incompetent?

I am so sorry you have to deal with this. Thinking of you!

Sarah