| | Joined: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | OP  "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2012 Posts: 145 | Anyone who has been keeping tabs on my other post re: Jen and her road to recovery would be surprised to see a post here in the recurrence section.
Unfortunately, the results of the biopsy obtained from the bronchoscopy surprised everyone with the isolated nodule (2cm wide) in her right lung coming up as positive for SCC.
We are now preparing for our next round of treatments with a PET scan scheduled in for Wednesday followed by the multidisciplinary cancer team on Friday.
Their initial thoughts is that it is operable via keyhole surgery and they will assess the PET scan results to see if further treatment (chemo / radiotherapy) will be necessary afterwards.
I don't think reality has quite sunk in for either of us and we are a bit in shock and would appreciate any feedback, comments and/or advice anyone who has been a similar situation with their road to recovery..
thanks.
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0)
3/9/12: Induced birth @ 36 weeks - Baby Hunter!
11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec.
24/10/12: 33xRad + 7xChemo
7/12/12: Tx complete
21/3/13 & 21/6/13: NED
24/7/13: SCC in Lungs - OP: Lobectomy (VATS)
29/1/14 passed away
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Jay, I am so sorry to hear this. I know too well how absolutely devastating a recurrence is. I, personally, was stunned when Kris had his. I felt quite helpless initially. Only once we had seen the tumour board with a treatment plan laid out did I feel that I could really cope.
The good thing is that you do have options. The team are coming up with a treatment plan. Just like the first time, you will get through this.
You know all this already about taking each day at a time, but it really is true.
I'm sure someone with a similar scenario with a lung nodule will post shortly.
Thinking of you, Jen and Hunter,
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | 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 | Jay, Im very sorry to read about Jen's recurrence. Im sure your family is in shock. It will take a while for the reality of the situation to sink in.
On the good side, this sounds like it was caught very early. A 2cm nodule is very tiny. Hopefully this will be easily cured.
Best wishes!!!
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: Apr 2013 Posts: 76 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 76 | Jay-I am so sorry to hear of this development. It is similar to news my husband and I received at end of April, following 3 month followup PET scan and a biopsy. He has focused on putting one foot in front of the other, work-wise and children-wise, while I have done much research and become more active on this site seeking information--and finding not only info, but great compassion. He has a very small malignancy in the hilar lymph node of lung. We are still evaluating treatment options, but 3 opinions thus far indicate that surgery is likely not an option for us, I believe because it is in the lymph node. The likely scenario is a radiation approach, with chemo as a sensitizer. (This is a new approach that is being tried at Hopkins for certain HPV cases.) Is your wife's nodule in the actual lung or in the lymph node? Also, your tagline does not indicate HPV+. Best of luck with the PET Wednesday. Please keep us posted. I am happy for you that you have been presented with a plan of action. Best to you both, Mary
Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
| | | | | 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 | I'm so sorry to heAr this hopefully it can be removed - will
They follow up further treatment?
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Dear Jay,
I am soooo sorry. I cannot even imagine what the 2 of you are going through. It does sound like there is a plan set in motion though. Praying things go well. Please keep us updated. My heart is with you both.
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | I am also shocked to read your latest Jay as I have been keeping tabs on you and Jen on your other thread.
Seems that you are being well looked after by your team and I hope all goes well tomorrow and Friday.
Thinking of the 3 of you and will look for your update soon.
Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | | Assistant Admin Patient Advocate (1000+ posts)
Joined: Oct 2012 Posts: 1,275 Likes: 7 | Jay, I am so sorry to hear about the latest not-so-good news. Just when you think you are out of the woods and then this. Hopefully the doctors will find a way to help you deal with this latest twist. Keep you, Jen and little Hunter in my thoughts.
Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
| | | | | Joined: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | | OP "OCF Down Under" Senior Member (100+ posts)
Joined: Sep 2012 Posts: 145 | Thanks everyone for their comments & support.
Having spoken to our ENT doctor about the situation - it looks like is the best case scenario in the worst situation possible for Jen at the current stage.
It looks like as the cancer has been caught very early, and they will be able to use non-invasive VATS (Video Assisted Thoracic Surgery) to remove the tumor from Jen's lung which is a positive sign they are going for a cure rather than treatment approach.
However, the very fact that the cancer has spread through to the lung means that there is a very high likelihood of this being an ongoing battle as the chances of this reappearing in various different parts of the body are now extremely high.
We will only know for sure our final treatment method and prognosis once the doctors look through Jen's PET scan results which is scheduled in for tomorrow at our Cancer Hospital here in Melbourne - Peter Mac.
This is what scares me the most and I have yet to see anyone from this forum who has had complete remission after cancer had spread to the lungs which is the case for Jen...
I wasn't expecting anything of this recent biopsy as Jen has showed no respiratory problems or the usual signs of cancer over the past 12 months.. I guess this is why the news this time around has hit pretty hard and I am still trying to cope with the idea that we are now on borrowed time..
Your prayers, thoughts & kind words of advice is greatly appreciated and I will try and keep you all updated as to how this plays out.
Kindest Regards
Jay, Jen & Hunter.
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0)
3/9/12: Induced birth @ 36 weeks - Baby Hunter!
11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec.
24/10/12: 33xRad + 7xChemo
7/12/12: Tx complete
21/3/13 & 21/6/13: NED
24/7/13: SCC in Lungs - OP: Lobectomy (VATS)
29/1/14 passed away
| | | | | 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 | There is someone here who has survived lung mets - she had two nodules one was removed a second shrank with treatment - she is NED today. It was a 3 year battle. My hopes are high that this is it for you. She was also involved in two clinical trials. Hugs.
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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