Metastatic Adenocarcinoma - CUP.
Unfortunately after a long 6 months of being poked, prodded, told that what I am feeling and my gut instinct is wrong, I finally have an informal Dx.
Informal because it is from the pathology report given to my by my doctor with a confirmation appointment to come with my surgeon on Tuesday.
My surgeon has already let me know that there will be more surgery and more scans to see if he can find the Primary.
I am strangely at peace with knowing what it finally is however not knowing if this is the beginning of the end or not, is a little daunting. I have 2 daughters under 10 and have no family locally. So its just me hubby & the kids.
The story so far:
2013 Removal of L Breast Hamartoma - 52x65x30 - Benign
2014 Dx Fibromyalgia
May - Began feeling unwell - Dizziness and Nausea
June - Loss of balance, High BP, Persistent Migraines - BT reveals WCC outside on normal parameters (Doubled)
July - MRI & CT of Brain - NED, Referral to Neurologist
September - BT - POSITIVE PNMA2 (Ma2/Ta) IgG
October - PET Scan & Ultrasound - suspect ovary - Referral to Gynecology Oncologist & Colorectal Surgeon.
November - Colonoscopy - NED
Left Oophhorectomy - NED, Peritoneal washing - POSITIVE Metastatic Adenocarcinoma. Lymphocytes, Neutrophils and macrophages
also visible, further follow up with GI Surgeon
Many symptoms that I have had for the past few years have been pushed under the rug due to the Dx of fibromyalgia. The medications I am also on for it have masked some of the symptoms until they became so great, they couldn't be hidden any more.
lack of sleep
Weight gain (8kg in 6m)
headaches/migraine increase in severity & occurrence
chest wall pain
pins & needles
loss of appetite
lower back pain
pins & needles
Does anyone have prior experience with metastatic adenocarcinoma - CUP?
Hello. I am so sorry you are going through this. We are not Drs here and most of us only really know about our own cancers but the emotions we have are the same. I hope so much there will soon be more light shed on this for you. I hope also that someone will be along who can be more help than I am.
My best wishes to you and hang in there.
Aussie, age 59
1987 CIN 111. Cervix lasered, no further problems.
Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.
Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
6 chop14 and Neulasta.
Clean PET April/10, 18 rads 36gy mop up. All done May 2010
Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
Discharged Nov 2014.
May/2012. U/sound, thyroid scan, FNB. Benign adenoma.
Relapse Apr 2016. AITL. Some chemos then on to allo or hap transplant. Onc says long remission was good. Still very fixable. All I needed to hear. I am pumped and ready. BRING IT ON
I'm really glad you found us, but sorry you have to be here. I wholeheartedly agree with Didee said above.
CUP (Cancer of Unknown Primary) can be difficult to treat unless the primary can be found.
You don't say where you are being treated. If at all possible, try to get a consult/second opinion from a major cancer center or University medical school. Larger centers tend to have the most experience with more unusual cancers, they tend to have the most up to date equipment (possibly more sensitivity), and also access to more research trials.
My best wishes that you can get to the bottom of this so you can start your recovery soon.
7/12 DX stage 3 pan can (adenocarcinoma) @ 65 - borderline resectable
8/12 - 10/12 Chemo (GTX) & Stereotactic Radiation
12/12 Whipple - R0 margins, 2/29 nodes pos.
1/13 - 5/16 Vaccine clinical trial - randomized to control group - vaccine showed no benefit
2/13 - 8/13 Gemzar for 6 months
Quarterly scans - no evidence of disease to 10/14 - spot on lung being watched - possible infection 2 months on antibiotics
3/15 - spot larger - probable met - surgery planned
4/15 - PET prior to surg - recurrence & lung mets - Surgery cancelled - EUS w/ FNA showed adenocarcinoma - Stage 4
5/15 - 9/15 Folfirinox @ reduced dosage - Stopped treatment after 11 infusions due to neuropathy
10/15 - 8/16 maintenance 5-fu every other week
8/16 - stable disease on both CT and PET/CT - chemo holiday while other treatments explored
9/16 - lung biopsy confirms pan can met,
10/16 -NanoKnife to pancreatic bed -PET after Nano showed new met in hilar lymph nodes - SBRT to both lung & lymph
Still open to immuno-oncology trials (vaccines or checkpoint inhibitors) if I find one I'm eligible for.
I found a link for you if you want more information
You may have already read this so apologies if this is so.
There are some scary stats there so another link is in order so that you do not freak out...please do not read the first article without reading this after. The article is about Stephen Gould a famous scientist who survived for a few decades with mesothelioma...it is an uplifting read for people with a daunting diagnosis...the link is:
Diffuse Large B cell Lymphoma
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission reconfirmed 1st October 2008
Remission reconfirmed 17th June 2009
Remission reconfirmed 7th June 2010
Remission reconfirmed 6th July 2011
NED AND DECLARED CURED on the 2/01/2013
No more scheduled visits to the Prof
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget rule Number 1
Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.
I may not have gone where I intended to go,
but I think I have ended up where I needed to be.
I am in Central Coast, Australia. Not too far from Sydney so I am quite lucky that I can choose my specialist from either location. So far, all of my specialists have been the top of their fields here where I live.
Tomorrow is the day that I meet with the next surgeon to determine the next step.
Keeping positive is hard but thankfully I work with the most amazing woman how has beaten Ovarian cancer past her 5year mark. So she has helped keep my mind at ease.
CUP is a difficult one, I will admit. There are cases in which the primary is never identified, and so it must be dealt with according to what pathology finds. However, there is increasing crossover in cancer drugs, as the "pathways" of cancer cell replication are known. Thus, for example, a kidney cancer drug may also be very efficacious against some other, unrelated type, since both use similar methods of cloning themselves. Most doctors love challenges, so I think that you will get the help that you need. Obviously, we are pulling for you here. Do let us know how you go.
07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. >50 tumors, marrow involvement.
08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
02/09 2) Relapse.
03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
07/13 3) Relapse, 4) Suspected Mutation.
08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
10/25/14 Clinical trial of Alisertib/Failed - Progression.
01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
02/24/15 Pralatrexate/Failed - Progression. 04/17/15
04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Two dozen tumors + small intestine (Ileum) involvement.
04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
BMB reveals 5) Myelodysplastic Syndrome (MDS), a bone marrow cancer.
07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
07/16/15 Total Body Irradiation.
07/17/15 Haploidentical Allogeneic Transplant receiving my son's peripheral blood stem cells.
07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
07/23-08/03/15 Blood nose dive. Fever. Hospitalized two weeks.
08/04/15 Engraftment official - released from hospital.
08/13/15 Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
09/21/15 Acute skin GvHD arrives. DEXA scan reveals Osteoporosis.
09/26/-11/03/15 Prednisone to control skin GvHD.
05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
09/16/16 Three skin punch biopsies.
11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), + 4 immunosuppressant drugs.
I have been chosen to suffer, therefore, I am blessed. Knowing the redemptive value of suffering makes all the difference.
"What is faith? It is that which gives substance to our hopes, which convinces us of things we cannot see"
- Hebrews 11:1
No news is good news huh? that is until you just cant take it anymore. it has been 6m and still cant decide if I do or don't. I am getting an endoscopic ultrasound to biopsy the stomach, pancreas etc.
I am also off to see my regular GP tomorrow at his request, fingers crossed he can also help things along test wise