| | Joined: Jul 2010 Posts: 5 Member | OP  Member
Joined: Jul 2010 Posts: 5 | Dear all,
I had surgery for submandibular gland cancer at 2010, result found adenoid cystic carcinoma. Now, I was diagnosed with mets to the pelvic area close to sacral foramen. Beside neing very scared, I wish to ask anyone who had similar experience what is the best option for treatment? It seems that I will be only radiated. Is there surgery or chemo option available? Please share some nice stories to make me feel better.
Thank you so much | | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Natasa, I can only offer support and good thoughts. Someone will weigh in with more specifics. You're part of our family now.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | They can radiate the bone (pelvic area... I doubt surgery is an option as it is likely IN THE BONE as well. I would ask about chemo as well because it is systemic and will hopefully get any stray cancer cells.
Have you had a scan?
is it in the bone or soft tissue?
best of luck.
I'm sure someone else will come along with more info.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jul 2010 Posts: 5 Member | | OP Member
Joined: Jul 2010 Posts: 5 | Thank you so much for kind words. Here is the english translation of CT report if it may help
Illness history:
Woman, born in 1972. On 2010 underwent surgery for submandibular gland cancer, result found adenoid cystic carcinoma. Had post operative local (head/neck) radiotherapy.
January 2013 experienced pain in pelvic area, went to CT scan resulting in:
Topic: MSCT examination of the pelvic area with injection of contrast
Axial slices were taken of 0.5mm thickness with reformation in all three planes and 3D pre- and post-contrast.
There are signs of infiltration of the wing of the sacrum on the left side in S1 level next to the sacral foramen. This lityc change has dimensions of 3.6 x 2.4 x 2.7cm and is not well defined, attenuation around 80HU with significant postcontrast reinforcement. There is a clear break of cortical of sacrum wing anterior and of the sacral foramen on the left, without root compression S1 left, nor any affection of the left hypogastric artery.
Smaller organic changes of the similar character exist in the body of iliac bone on the left side next to left SI joint up to 1.5cm in diameter.
The finding can correspond to polytop secondary deposits in bones of pelvic belt.
Diagnosis: DG1: Polytop lytic infiltration of pelvic bone.
Prim.Dr.Slobodan Cirkovic, radiologists - examiner
We need advice and possibly consultation with experienced doctor and proposal about possible treatment options.
Thank you very much | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | This situation is something a very limited number OCF members have experienced. I would suggest seeing the top cancer doctors in your area. If you havent already gotten a second opinion, it sure couldnt hurt at all.
When cancer has invaded the bones, surgery could be an option before doing radiation with or without chemo. I had cancer in my jaw bone which was surgically removed in 2007. This is much different than your situation. Im sorry but I dont know about cancer that has invaded the pelvic bones.
Best wishes with everything!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Did the doctor ordering the test review the scan with you, explain in laymen's term, and say what is the next course of action is? Like all, I'm not familiar with this, and looked at the diagnosis on the mentioned CT report, DG1: Polytop Lytic Infiltration of Pelvic Bone, and wished I knew more about it.
Good luck with everything, I hope you find answers soon, and as mentioned, you can get a 2nd opinion, if you can.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Jul 2010 Posts: 5 Member | | OP Member
Joined: Jul 2010 Posts: 5 | They just told us radiation is the way to go. We will ask for more details for sure and post update here.
Thank you very much | | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi there... it sounds as thought it is in the bone this being the case radiotherapy is the option. Drs can operate and remove bones but that's dependent on the area, and importance of the bone, and whether they can rebuild the area with something else. you need your pelvis and sacrum - perhaps there is someone doing cutting edge surgery who can rebuild these areas - it can't hurt to look into it. That said. I would also push for chemo if they choose to give you radiation. However, what Christine said is true. I know you are in Europe so my help in this regards is limited as I am not sure about your health care system, finances, or drs. But I do know you need to look for a top notch dr. at the best facility possible.
Take care and let us know how things go.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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