Please help- signet ring cell & two primary cancers! Rare & scared

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Fighting4hubs
Posts: 8
Joined: Fri Apr 07, 2017 1:13 am

Please help- signet ring cell & two primary cancers! Rare & scared

Postby Fighting4hubs » Mon May 15, 2017 2:01 am

Hi all, im very new to this so please forgive me.

I'm 5 weeks as so much has happened!

Chris my husband was diagnosed with sigmoid bowel cancer 25.03.17, he was presenting with Para Aortic spread, however he had a PET scan and that revealed he has a testicle mass too! (Something he didn't even know about)
We have now been transferred to the care of the Royal Marsden in London as our local hospital were unable to do a lot & felt this is so rare, they needed help!

On the 18.4.17 Chris underwent 4 1/2 hours of surgery and they did a 25-30cm resection of the sigmoid colon, and were able to get good clear margins.
They did an orchiectomy and removed the right testicle & also made the decision to open him up & take a biopsy of the bulky 5cm mass around the Para Aortic region to see what cancer was what!

We have now had the results and Chris has been diagnosed as having x2 PRIMARY CANCERS.

He has a Germ Cell Seminoma of the testicle which has spread to the Para Aortic nodes (90% cureable with invasive chemotherapy & radiotherapy)
But sadly he has a stage 4, adencarcenoma which is a Adencarcenoma, poorly differenciated with signet ring cell presentation.
They have removed 50 lymph nodes and 14 of these present with Cancer.
They have also found some "Low Volume" peritoneal spread. They found 3 2mm studs attached to some fatty scar tissue under his appendix scar (removed 15 years ago) and they have also found a "few" 2mm studs in the channel next to where the bowel was re-sected (apparently common site for spread being so close).
They have therefore staged him T4aN2bM1(peritoneal spread)

He is starting 6 rounds of FOLFOX next week & is having a small anaesthetic procedure to have a port put in - and we have been told he will then be scanned after the 6 cycles and then do another 6 cycles. They may add in C
Apparently the Oxaliplatin will shrink the Aorta nodes and then he may have some targeted radiotherapy.

I have researched and spent hours on google trying to find any positive stories and survivors Of mucinous adencarcenoma with a signet ring cell presentation and a spread like his and I just feel I'm loosing hope!

We have our beautiful daughter who is 3 1/2 and I'm now 22 weeks pregnant with another baby girl.

Please please can anyone offer any support / advice / hope?

I should mention that the hospital are outstanded by his fitness post surgery! He even did some work in the garden yesterday & has been speaking with his watch (he's a firefighter) about a day or twos return to work!! (Light duties only!)

Thank you in advance,

Loving wife Sarah
Husband age 36 Dx 25.05.17
Mucinous Adenocarenoma sigmoid with signet ring cell
CT Scan showed Para Aortic spread
PET scan showed separate primary testicular cancer
18.05.17 bowel re-Sec sigmoid colon 25-30cm, testicle removed, Aortic Biopsy
03.05.17 results 2 PRIMARY CANCERS - testicular cancer is Aortic spread
12.05.17 Path report post surgery - peritoneal bowel spread (low volume 2mm studs)
Grading for bowel T4aN2bM1(peritoneal)
Folfox for both cancers due to start, possible added in Cetuximab

ACPdiddy
Posts: 16
Joined: Wed Apr 12, 2017 4:01 pm
Facebook Username: Albert Pierce

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby ACPdiddy » Mon May 15, 2017 12:15 pm

Ugh, that is a crazy story, and I'm sorry you're having to live through it. Good that the testicular cancer is manageable at least.

With the signet ring cell adenocarcinoma, it's just hard to know what to say. It's rare enough (<1% of colorectal cancers) that there may not be anyone here who's had experience with it.
I'm going to try to comment, though I'm just giving an amateur opinion going off my limited knowledge of non-SRCC colorectal cancer.

First, I wouldn't be especially distressed about not finding survivor stories on SRCC. It's rare enough that there aren't many stories at all. You're a trailblazer (lucky you :wink:) So you're going to have to show us what an SRCC survivor story looks like.

Second, it sounds like the only metastases your husband has are in the peritoneum? If that's true, maybe he would be a candidate for Hyperthermic intraperitoneal chemotherapy (HIPEC)? I don't know much about that, but others here probably do. Here's an article on it in the UK. http://www.nationalmesotheliomahelpline ... sufferers/ It's controversial, and the Royal Marsden may not do it, so maybe it's worth a second opinion at a place that does.

That's all I can think of for now.
Al

Achilles Torn
Posts: 48
Joined: Fri Dec 16, 2016 2:41 pm

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby Achilles Torn » Mon May 15, 2017 1:37 pm

What a horrible roller coaster to be on and I can't offer much.

I am going to chime in and say that although I'm don't have Signet Ring Cell myself, I spent literally months reading every story on the internet after my diagnosis in December and joined the ColonTown facebook support group (I recommend joining, it is a private group with many members with lots of useful information). While I don't have links I can certainly tell you that there are survivor stories of Signet ring cell CRC that I have read. Sometimes the most aggressive Cancers respond better to treatments. For what it is worth - after reading others stories I have the opinion that you must be as pro-active as possible to find the right treatments, research as much as possible and ask for help and advice. For the most part the people here and colon town are an awesome resource that can help you through.

Hope that helps
AT
40 yo Male. DX By Surgeon Dec. 8 2016
Sigmoid Colectomy Dec. 9 2016
Pathology T3N2b?MX 19 of 24 Nodes Positive.
peri colonic tumor deposits 8cm from Tumor. Perineural invasion positive.
PET scan shows Para-Aortic and Iliac Lymph node spread.
Moderately differentiated. MSS. KRAS/BRAF Wild
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after 1st round

Eternal optimist
Posts: 11
Joined: Sun May 01, 2016 9:26 am

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby Eternal optimist » Mon May 15, 2017 6:05 pm

Its great to hear that your husband his recovered so well after his surgery.

The two centres that perform Hipec in the UK are Basingstoke Hospital and Christies in Manchester. I may be mistaken but believe Basingstoke have been doing the procedure for longer and have more experience. I know a few people who have had Hipec there who have found them caring and very proactive in giving treatments that offer a cure. I dont know how they would view your husband's eligibility having para aortic spread from his testicular cancer, but you can be referred for them to consider it, either through your consultant or by phoning and referring yourself. If the para aortic nodes are removeable surgically they could do this at the same time as the Hipec if he were accepted.
Diagnosed age 34 in Feb 2015, sigmoid tumour with spread to para-aortic node.
8 cycles CapOx March-October 2015
Resection of colon and para aortic node December 2015. Histology T3a N2 M1a. Clear margins not achieved on para aortic node.
PET scan Febuary 2016. Mild uptake in para aortic node region, not visible on CT.
8 cycles capecetabine April-November 16
PET scan December 2016. Strong uptake in para aortic node region, 17mm node visible on CT scan.

Lee
Posts: 4719
Joined: Sun Apr 16, 2006 4:09 pm

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby Lee » Mon May 15, 2017 8:14 pm

Hi and welcome, sorry for the reason you are here.

Glad to hear your husband is doing so well. My advice, not sure where you are, butt getting a 2nd opinion at a major cancer treatment center might be a good idea. Not to mention, genetic testing, especially if you have children.

All the best to you and your husband.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

fumaros
Posts: 167
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby fumaros » Mon May 15, 2017 9:18 pm

Hello,

Your husband sounds like a fighter. SRCs are rare, but there are a few of us that have that feature on this forum, it is also possible to survive it, despite its aggressiveness.

I am surprised avastatin isn't included in your husband's chemo regimen; i understand it is part of the standard treatment for stage VI.

The good news is that SRC is not treated any differently than other CRCs. I was also informed by a oncologist at a leading cancer center (MSKCC) that it responds well to chemotherapy.

You should look into HIPEC to target the peritoneal mets, it is good move, although the science is not yet conclusive as to its effectiveness.

There are others, even here on this forum that have CRC with SRC, Type "signet ring cell" in the search window in the quick links and you will find a couple of us and our stories, including stories of long-term remission without recurrence.

I do wish strength for you and your family during this time.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6
FOLFOX began 6/24/16 - 11/25/16
10 round FOLFOX, 2 round 5-FU & Leucovorin
MRI & CT 8/16 - NED, CT 12/16 - 4/17 - NED

Fighting4hubs
Posts: 8
Joined: Fri Apr 07, 2017 1:13 am

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby Fighting4hubs » Tue May 16, 2017 11:24 am

Thank you all so much for your replies!

With regards to the Avastin, they are in the process of doing a some genetics testing and if it come back as RAS mutation then they will add in/cetuximab which I think also has the name of Erbitux?!

We have spoken with the Oncologist who has said he will possibly be a candidate for the surgery, but they must get him to Chemo first!?! Is this the correct way? I am so worried reading some of the research about HIPEC & surgery that it could be too late if the peritoneal spread progresses, but they seem keen to try Chemo first!

My other biggest question is regarding picking up the studs on a scan review!? They are so small at 2mm that apparently they don't show up on a scan, if this is the case how will they manage this & check as my husbands bloods and CEA are all presenting pretty much normal!!

I rang the unit in Basingstoke this morn and they have confirmed they do the surgery, but the referral would need to come from our Oncologist or Registra and they would need to have lots of letters and documents to support his referral. I'm honestly not sure what the criteria is - but we so want to look at this surgery now, I think the main reason they want the chemo first is to shrink the Para Aortic nodes from the testicle.
The/Oxaliplatin should apparently do this with some localised Radiotherapy.

Apparently the Oncologist we have at the Marsden Professor Cunningham is one of the Top in Europe, it's just so hard not to want to keep pushing for what we believe is the best options through reading and research we've done ourselves!

Thank you all again
Husband age 36 Dx 25.05.17
Mucinous Adenocarenoma sigmoid with signet ring cell
CT Scan showed Para Aortic spread
PET scan showed separate primary testicular cancer
18.05.17 bowel re-Sec sigmoid colon 25-30cm, testicle removed, Aortic Biopsy
03.05.17 results 2 PRIMARY CANCERS - testicular cancer is Aortic spread
12.05.17 Path report post surgery - peritoneal bowel spread (low volume 2mm studs)
Grading for bowel T4aN2bM1(peritoneal)
Folfox for both cancers due to start, possible added in Cetuximab

User avatar
LPL
Posts: 180
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby LPL » Tue May 16, 2017 12:17 pm

Dear Fighting4hubs,
You wrote:
Apparently the Oncologist we have at the Marsden Professor Cunningham is one of the Top in Europe, it's just so hard not to want to keep pushing for what we believe is the best options through reading and research we've done ourselves!

Like you I'm in Europe.
Your husband's Professor https://gicasym.org/professor-david-cun ... te-lecture
And my husband's professor
http://www.bergonie.org/clinical/presentation.html
has obviously worked together in this published paper https://www.ncbi.nlm.nih.gov/m/pubmed/27254838/

My hubby and I felt as we were in Very Good hands with 'our professor'. I had a lot of questions (reading a Lot..) and I could send my questions to the Professor and he replied to them all.
I just want to send my Very Best wishes to you & your hubby and Best of Luck with what ever you decide.
Kind Regards /Lena
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

DarknessEmbraced
Posts: 2568
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby DarknessEmbraced » Tue May 16, 2017 12:49 pm

I'm so sorry you and your husband are going through so much!*hugs* I hope his chemo goes well! I'm glad his recovery from surgery has gone well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/2016
NED 11/10/16

Fighting4hubs
Posts: 8
Joined: Fri Apr 07, 2017 1:13 am

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby Fighting4hubs » Wed May 17, 2017 12:10 pm

Today has been a difficult day, hubby has had the massive realisation how real this all is as we cancelled our summer holiday :(
The could see fear in his eyes and desperation today as we have been told Chemo is delayed one week while we wait for them to arrange this surgery for a port to be placed in his chest!

He is so scared the aggressive signet cell will continue to grow & I have tried to calm him & say he wouldn't be even having chemo yet if he hadn't recovered from Surgery so incredibly well & to try trust the hospital!

We're both unable to get this HIPEC surgery out of our minds and cannot help continuing to wonder if we should push for this now?!

Are there any more questions we should be asking, would it be worth making another appointment to see the Oncologist? It's so difficult as we are 2 hours away from them! But we must keep in their care as they are incredible & we feel so lucky to be in their hands!

Thanks again, it's so scary, but wonderful to have this forum and support network!
Husband age 36 Dx 25.05.17
Mucinous Adenocarenoma sigmoid with signet ring cell
CT Scan showed Para Aortic spread
PET scan showed separate primary testicular cancer
18.05.17 bowel re-Sec sigmoid colon 25-30cm, testicle removed, Aortic Biopsy
03.05.17 results 2 PRIMARY CANCERS - testicular cancer is Aortic spread
12.05.17 Path report post surgery - peritoneal bowel spread (low volume 2mm studs)
Grading for bowel T4aN2bM1(peritoneal)
Folfox for both cancers due to start, possible added in Cetuximab

fumaros
Posts: 167
Joined: Sat Jul 02, 2016 10:26 pm
Location: Syracuse, NY
Contact:

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby fumaros » Wed May 17, 2017 1:24 pm

It is terrible that every cancer seems to have it's own unique twist, some more than others.

HIPEC is not definitive as to whether it has an overall benefit, but it is a recommended treatment. However, chemo has good results for killing cancer cells. It is unfortunate you can't do both at the same time, probably because of the increased risks of bleeding and inhibited healing caused by chemo. I am not a doctor and I am not making a recommendation, but the decision by your physicians sounds sound (for lack of a better word). The chemo starts fighting the cancer now, and chemo has a proven record for killing cancer cells. Systemic chemo has a stronger track record for successfully killing cancer cells than HIPEC. If you both decide to do HIPEC now, they will stop the chemo, plan for the surgery, and then he would have to recover from the surgery - all of which will take weeks, in the mean time since he had positive lymph nodes there might be cancer cells in other areas of his body than the bowels that need to be killed. It is a hard choice still.

I had my port put in and had an access needle placed in the port at the same time (i ended up with a rather large bandage), but this way I was allowed to start chemo less than two days later before I had even healed from the port placement surgery. You could bring this up as an option so you can start chemo sooner.
Diagnosed 4/8/16, age 29
Colectomy 4/20/16
Stage III, T4bN1 Tumor 7x6.5x2. Muscinous Adenocarcinoma with SRC features
2/16 lymph nodes
CEA 4/14/16 - 16.8
CEA 6/2/16 - 1.9
CEA 6/17/16 - 0.87, 7/16 - 1.33, 12/16 - 1.14, 4/17 - 0.6
FOLFOX began 6/24/16 - 11/25/16
10 round FOLFOX, 2 round 5-FU & Leucovorin
MRI & CT 8/16 - NED, CT 12/16 - 4/17 - NED

Fighting4hubs
Posts: 8
Joined: Fri Apr 07, 2017 1:13 am

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby Fighting4hubs » Fri May 26, 2017 2:46 pm

Hi all,

Thanks again for all the replies, I hope no one minds me continuing on the thread ....

So, Chris spoke with his Oncologist and got very anxious at the wait for a port to be inserted and the delay for Chemo, so they agreed that given this situation & not being able to port sooner, they would be happy for him to have Round 1 introvenously through the vein in his arm and a canular. He has just finished the chemo, he did really well for the 2 nights in hospital with zero reactions to the chemo ..... so what should be expect now? I underatand that a lot of people start to feel the side effects once the chemo is disconnected? Can any one shed any light on what to possibly expect?

We have been told to check for temps below 36c or above 37.5 and not to have any cold drinks or take anything else cold out the fridge for at least 48hours after disconnect. The weather here in the U.K. Is suprisingly hot at the moment so they have said not to worry to much about wrapping neck or mouth for cold sensitivity etc!

We saw one of the registrars and I pushed on Chris's Path report and the meanings . He has an Adenocarcenoma which has signet ring cell morphology within, I asked and queried a percentage and how much? But he said this didn't matter, all we needed to focus on was the bowel having be resected and Chris having "Minimal" peritoneal involve the with low volume disease spread and 12 out of 48 lymph nodes which he said could have be worse!

He said that it is aggressive but they are acting fast with chemo & will look to add in Cetuximab if his RAS gene is correct for this drug (still waiting on the results)
We also went through all his bloods and his levels are pretty much within "normal" ranges bar one or two - but they said these are more expected as only 5 weeks post surgery!
His CEA has gone from 3.7 and was down to 1 for base bloods as chemo was starting !

I also discussed with the team about alternative herbal remedies and juicing - they were not so keen from an medical perspective, but said a healthy diet and nutritants from juicing was fine, as long as he was not on a juicing diet!
I am also planning to give a multi vitamin, green tea and lots of water to keep hydrated - is there anything else I should do??

Thank you all in advance !

Sarah & onboard baby wiggling as I write this! xx
Husband age 36 Dx 25.05.17
Mucinous Adenocarenoma sigmoid with signet ring cell
CT Scan showed Para Aortic spread
PET scan showed separate primary testicular cancer
18.05.17 bowel re-Sec sigmoid colon 25-30cm, testicle removed, Aortic Biopsy
03.05.17 results 2 PRIMARY CANCERS - testicular cancer is Aortic spread
12.05.17 Path report post surgery - peritoneal bowel spread (low volume 2mm studs)
Grading for bowel T4aN2bM1(peritoneal)
Folfox for both cancers due to start, possible added in Cetuximab

User avatar
LPL
Posts: 180
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Please help- signet ring cell & two primary cancers! Rare & scared

Postby LPL » Fri May 26, 2017 4:35 pm

Dear Fighting4hubs/Sarah,
You wrote:
"I hope no one minds me continuing on the thread
"
Of course not !
Please come here and share & ask questions.

Good to hear that your DH's treatment has started and that he "did really well for the 2 nights in hospital with zero reactions to the chemo".
My husband also stayed 2 nights at the hospital (2hours from our home) for his 1st Folfox chemo. I had read about not nice things that could happen when they started the chemo.. so I was thankful that they were monitoring him.

From we came home there was nothing bad happening, just his hands reacting to cold and he was a little more tired then normal. This extra tired used to happen after the pump was disconnected. My DH had No fever or nausia and the food tasted normal but I have heard others having had that problem. His hair became sort of soft/curly and his nails became fragile and broke easily. For him they stopped the Oxi in the Folfox after 7-8 chemo sessions due to neuropathy that did not go away between chemo sessions.

Good to hear that your hubby's CEA has gone down after surgery!

Regarding supplements etc.. Hubby's surgeon recommended probiotic and hubby has taken that + calcium/vit.D3 (prescribed by his GP) + Lactoferrin (prescribed by me ;-) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4897438/
Apart from that he has eaten normal healthy food. And exercised a lot = daily long walks with our dog.

Please be aware and check blood glucos. Hubby had a bad reaction to the steroids they give with the chemo. See my signature and this article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3851349/

Wishing all of you (including onboard baby ;-)) all the best!
Kind Regards /L
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets


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