Sigmoid tumor & Para Aorta spread - Please help our little family -

[Fighting4hubs]

Hi all,

I am new to this forum and stumbled across these posts.
I am a wife to my husband chris and we have a 3 year old daughter and I'm 4 months pregnant with our second daughter on the way.

My husband was diagnosed with a 3-4 tumor in his sigmoid colon.
We prepared ourselves for surgery & the chance that this may have spread to other organs & be a stage 4 - however we were completely shocked and unprepared to be told a CT scan has confirmed a second "soft tissue mass" in the lymph nodes next to the Aorta (I believe this is called Para Aorta?) this mass is 5cm x 3cm x 2cm
He said he believes this to be the lymph nodes coming together and creating another tumor and cancer spread.

The surgeon basically said there is nothing he can do for the bowel and surgery is not an option as it's spread .

He is scheduled in for a PET scan this morning to see more but at the moment we have been completely left in the dark.
We have no idea of what stage he is, we have not been given a plan and just kept being told it's not good news and there is no cure!

I've spent most of my time on google trying to find some answers for him & a plan - I seem to be reading a lots about Chemo and Avistan?
Is surgery and option ? What about Biopsy etc?! We have not even met with an oncologist yet & no one seems to be contacting us! I spend most of my days on the phone trying to get help and someone to give us some answers !

It's like we have been told it's spread and that's that and we've been sent on our way!

I know from my reading that these Para Aortic lymphnodes should be less than 1mm so something the size of 50mm is clearly not a good sign.

I will continue to do all I can for him and our family - if anyone has any advice or hope please please message us.

Thank you in advance

Desperate wife Sarah. X

[Violet]

Hi Sarah,

I'm so sorry that your husband is sick. My husband was 30 and our first daughter was under one when he was diagnosed with rectosigmoid cancer. It was caught relatively early so we were fortunate. He did have significant, life-threatening complications during two long hospital admissions and I remember the rising feeling of panic that no one would give us a straight answer and the doctors were hard to contact as I watched him get sicker and sicker.

Generally speaking, a biopsy is almost always done to be sure it is cancer and not something else (no matter how unlikely that something else might be). It would be unusual not to have a biopsy and formal staging is usually done after biopsies have been obtained- although they should be able to give you a pretty good estimate of stage given that it sounds as though there is significant lymph node involvement. Our initial dealings were all with surgeons and I had to specifically request a referral to an oncologist after more than a month of only seeing surgeons. The oncologists are the right people to answer a lot of questions you may have about future treatment, staging etc. in my opinion, especially if surgery is not on the cards at present.

My advice is be persistent and demand attention, even if its not in your nature. Often doctors forget how much explaining they need to do and also, what its like to be a patient, so make yourself heard. If you want to see an oncologist, insist on a referral.

I will say a prayer for you and your husband. I hope you are able to get some answers soon,

Violet

[Eternal optimist]

Hi there,

I can only write a quick message as I'm in the UK and its past my bedtime! I was diagnosed just over 2 years ago with para aortic spread. My para aortic nodes were operable as they were low down (some are not possible to operate on as they are buried in the chest), but I had 6 months of chemo first to control the disease before any operations. This was because when you have para aortic spread you are more likely to have the cancer spread to other areas quickly. I've recently had a recurrence, also in my para aortic nodes, that I have had radiotherapy on as they were too high and too close to the aorta to be operable. My team weren't keen for me to have it at first, amd suggested more chemo, due to the risk of the cancer spreading to other areas while I am treating these nodes, but they decided to go ahead as my disease doesn't seem to be spreading fast (I hope- i have my next scan next week). I had chemoradiotherapy, taking xeloda at the same time. Some hospitals are starting to do radiotherapy and Xelox chemotherapy at the same time- I havent heard of this being used on para aortic nodes yet but is something you can ask about. Are you based in the states? I dont know much about your healthcare system, but others on this site can advise.

Therr are lots of people on this forum with para aortoc node mets. You can use the search function to find other threads- the terms para aortic or olymphian should bring up lots of results. I hope you find the hope you are looking for at this time. My son was 8 months old when I was diagnosed, and I worried I wouldn't be around to aee his first steps. He is now about to turn 3 and I feel better than I have in years, treasure every day with him and plan to be here for many milestones.

[Maia]

Hi Sarah, so sorry you, your husband and family, are going through this.
May I ask where you're located, if your family can travel, if your husband is being seen at a large cancer centre?

[rp1954]

H... a 3-4 tumor in his sigmoid colon.
We prepared ourselves for surgery & the chance that this may have spread to other organs & be a stage 4 - however we were completely shocked and unprepared to be told a CT scan has confirmed a second "soft tissue mass" in the lymph nodes next to the Aorta (I believe this is called Para Aorta?) this mass is 5cm x 3cm x 2cm
He said he believes this to be the lymph nodes coming together and creating another tumor and cancer spread.

That's also called a conglomerated mass (a cluster of nodes and gluey-weblike materials). The ordinary cyclic chemo treatments often weren't good at controlling para aortic nodes lymph metastases long term. Mild, continuous, immune and immunochemo treatments were an immediate priority for us, from day 1. (much of Life Extension + more)

The surgeon basically said there is nothing he can do for the bowel and surgery is not an option as it's spread .

Yes, they usually will not operate on the para-aortic lymph nodes and may not admit that it is possible, but it is possible. We got both resections done, the aorta part with difficulty (finding a real top gun). The first surgery was due to near total obstruction at diagnosis, but we managed to pre-treat it for a few weeks on immune therapies (like Life Extension with add ons) with a good result. Then a year later, with metronomic chemo and immune therapies at work, the para-aortic nodes. In some countries, the initial surgery may be historically easier to get because chemo is more expensive than surgery, more painful (no port) for "chemo forever".

The real issues involve treatment potency vs mildness, continuous treatment, endurance, and long chemo gaps near surgery. They can all be overcome but they are not standard and offered at the first clinic. Basically they've often been giving up on patients without a realistic attack on these problems. You have to advocate.

...we have not been given a plan and just kept being told it's not good news and there is no cure!

We had to develop a plan for ourselves, after rejecting the norm, which we considered short term oriented, harsh and unaffordable.

I've spent most of my time on google trying to find some answers for him & a plan - I seem to be reading a lots about Chemo and Avistan?

Normal in 2010-12 was Folfox-Avastin then Folfiri-Erbitux (if Kras wild). More experimental drugs may be available now. We more followed the international literature, forums, and independent sources for more QoL and cancer inhibition.

Is surgery an option near the Aorta & What about Biopsy etc to see more on that Tumour?

Both near the aorta, and a block cut through an involved aorta, are possible (the aorta has to be patched). Just not every surgeon can or will do it. An MD Anderson surgeon might be good enough, we actually skipped the MDA trained guy, who was reluctant near the aorta, and used a Japanese trained talent who could do p-nodes like Zorro (almost a quick flick). The surgery is the biopsy and part of it can be shipped off to laboratories for chemo tests, even as a living tissue (we did this) arriving within ca 24 hrs.

We have not even met with an oncologist yet & no one seems to be contacting us! I spend most of my days on the phone trying to get help and someone to give us some answers !

It's easy to fall between the cracks once you deal with less familiar situations that have no good and easy answers.
If you go to a major cancer center, they'll have their plan(s). At some level of expertise, multiple opinions and options are possible. Time, money, knowledge, communications, and self advocacy become the limits.

It's like we have been told it's spread and that's that and we've been sent on our way!

You have to find people that will actually help and do your own homework.

...something the size of 50mm is clearly not a good sign.

In our case, there was a lot of initial confusion and misunderstandings because of both the para aortic nodes, 25 mm at diagnosis, and other features that had receeded under immune therapy before first surgery. Basically, a year later they typically were not not eager on the p-nodes, ordinary surgeons washed their hands of us. As practical matter, one year in, it was important to focus them (insurance, drs) on the p-node cluster as a single active site, because even 6 years ago there were some successes reported in the literature.

The conglomerated cluster removed six years ago was 6+ cm and loaded with cancerous nodes, with extensions.
Some oncologists would rub their hands together while giving narrow, ugly options while failing to consider other promising treatments, both initially and a year later. We never talked to them again.

What we decided to do was something like ADAPT with more goodies until the biomarkers (CEA, CA199, LDH) stopped climbing or went down. A lot more goodies (a mild drug cimetidine for CA199, and high potency supplements, some beyond the Life Extension doses). And use medical services, and natural medicine, a la cart. We realized early on, what the journals call a "multimodal" treatment approach could be necessary.

You might want to search and read some of my previous posts, too.

[Achilles Torn]

Hi all,
Is surgery and option ? What about Biopsy etc?! We have not even met with an oncologist yet & no one seems to be contacting us! I spend most of my days on the phone trying to get help and someone to give us some answers !

It's like we have been told it's spread and that's that and we've been sent on our way!

I know from my reading that these Para Aortic lymphnodes should be less than 1mm so something the size of 50mm is clearly not a good sign.

I will continue to do all I can for him and our family - if anyone has any advice or hope please please message us.

Thank you in advance

Desperate wife Sarah. X

Hi Sarah,

As you can see my initial presentation was similar. Sigmoid colon tumour with Lymph node spread up to the Para-aortic lymph nodes (diagnosed through PET scan as Biopsy would be difficult to the area). I have done 7 cycles of FolFox Chemo with Bevicuzimab (Avastin) and my last CT scan showed a reduction of the nodes visible on CT so Chemo appears to be holding it back for me for now. (These nodes can be up to 1cm normal size, however they can 'cluster' meaning that they present as larger masses on the scan, so don't assume the tumour is 5cm big)

I understand where you are coming from and the shock is immense to deal with...you are in the right place as there are many people on this board who have been a great help to me (both directly and through their historical posts). I
I did a lot of reading for the first few months and met with many doctors including a surgeon and radiologist.

As I'm a little ahead of you in the process I can tell you that Surgery/Radiation IS a possible option depending on other factors. After my Oncologist said neither was possible both the surgeon and radiologist said that they would do surgery/radiation if I wanted (but agreed chemo first was the way to go).

I can also say I have read several anecdotal stories, still very much in the minority, of people who have had lymph node spread resolved into long remissions by Chemo/treatment (I always hesitate to say "cured"). There is no reason your husband can not be one of these super responders.

Push for all the information and treatment options you can - Genetic testing, scans, biopsy, all provide important information which helps determine treatment options. Get him into treatment ASAP, the sooner the better, and I do recommend Avastin (Bevicuzimab) as part of the Folfox or Folfiri chemo regime.

Search for posts from 'Warrior Spouse', 'Brown Bagger', 'Jdepp', 'Crguy' who have stories that inspire and educate. It is a horrible diagnosis but you can see there is always hope.

Feel free to PM or reach out to me here if you have any questions.

AT

[Fighting4hubs]

Thank you all so much for your quick responses. I am so glad I came across this site and it is a great comfort to read others inspirational stories and have some hopeZ

I have honestly never been so scared in my life, but I am determined to be his rock, to research, push the medical team daily and be his personal advocate.

We are based in the U.K.and I do believe that the "local" hospital we are under (who have recently been in special measures) are struggling to cope with his diagnosis and come up with a plan!

We are battling to get him transferred to the Royal Marsden in London (a couple of hours from us) but they seem to have the expertise and excellence in cancer treatment.

May I ask about diet please? Is there anything we can be doing in the meantime while we wait the results of the PET scan? I've read that bicarbonate of Soda is good for reducing the PH in the body and the alkaline and will help "slow" the growth down?

My husband Chris is still presenting so fit and well, he is still able to continue the build on our house and is going about day to day in such good health, presenting no symptoms at all and feeling extremely well!? Surely this has to be a good sign?

I have googled some of the terminology of some of your kind posts, as I must admit I don't understand it all and it's quite overwhelming !

Would I also be right in thinking that this PET scan will show the line that the cancer has tracked and spread? 8: there any way they will treat the original bowel cancer with surgery in the meantime as they seem to be saying no!!

Thanks again for all your information and kind posts.

S

(( Moved your post into this topic with the replies - CRguy ))

[Achilles Torn]

Hi Sarah,

Not sure why when I quoted your last post it ended up in my older thread, I must have had it open or something and I'm sorry as that may have been confusing. As to your question on diet and things you can do before treatment starts etc.from my research these are the conclusions I have come to so take from them what you will....

1. Diet will not cure cancer...However - it makes sense to make your body as healthy as absolutely possible, to endure treatments, to strengthen the immune system, so eating whole foods/plant based diet makes sense in this regard. Adding things like Turmeric/Ginger/PSK mushrooms can't hurt either.

2. Studies have proven a modest but improved survival benefit from the following: Regular exercise, Vitamin D supplements, Cimetidine (Tagamet, an over the counter drug), daily low dose Aspirin.

These are all things my oncologist approves of however you should check with his especially when he enters treatment (Aspirin lowers platelets for example which will already be lowered by Chemo).

Hope that helps
AT


(( Moved your original post above, into this topic so Fighting4Hubs can have her own discussion topic- CRguy ))

[stu]

Hi,
I am in the UK too. Quite a bit north from you right enough .
I had posted earlier but it never came up. As you can see from my signature my mum has been navigating the NHS for nearly eight years as a stage 4 patient. This forum is wonderful and has helped significantly. However you have to remember we are dealing with a different medical system and there are positives about both. What I have observed is there is a slower and longer deliberating process on what avenue to take in a stage 4 setting but surgically it's pretty good. We are inclined to go straight to chemo. Whilst it felt my mum was being denied surgery it was in keeping with the world health organisations recommendation. It also worked so well there was no evidence of cancer cells in her lymph nodes once surgery did take place. You have to be more proactive in finding current surgeons who you can get your husband referred to for review but there is time for that. You have Beating Bowel cancer UK helpline and Macmillan helpline to help you navigate the NHS. Lots to aim for and as you can see the NHS has done wonders for my mum.
Much love to you,
Stu

[stu]

Hi Sarah,
I posted on AT thread also.
Regards
Stu

(( Moved your original post above, into this topic also - CRguy ))

[WarriorSpouse]

Hey Sarah,
I am sorry to read of your husband's condition. I agree with AT on his healthy eating and Vitamin D intake. Check with your oncologist when it comes to Aspirin. If your husband is on Avastin it is not recommended, because f the side effects of bleeding.

As for your concern with a solid plan or action and truthful talk from an oncologist, I would strongly recommend going to a major cancer center at MD Anderson (TX), Sloan Kettering (NYC), or Dana Farber (Boston) to get a real honest assessment of your husband's condition and treatment forward. On this forum, people are surviving after having 5FU/Avastin (or similar)treatments with Para-aortic metastasis.

Get to the major cancer center for a true and accurate assessment and plan forward. You can depend on local hospitals to execute a plan from these centers and you do not have to return there until things change, but my suggestion would be to get there quickly and begin treatment as soon as possible.

There are many on this board who are survivors of similar colon cancer metastasis, so use the search engine in the upper left hand corner to read more posts about what they have gone through. The biopsy of the tumor will provide evidence as well of what drugs may work best to fight the cancer (KRAS/Lynch/ect). Put the results of the biopsy in the footer of your signature for others to see and to guide you to what has worked in the past... It is not a perfect science, but you are in the right place for support and direction to the best care for colon cancer patients.

Well wishes.
WS

[CRguy]

Hi Sarah,
welcome to the greatest forum nobody ever wants to HAVE to join.

Sorry I missed your initial posting, but I have done some housekeeping here to get all your replies back into your own topic.
You will have lots of folks input here, so now it is all in one place. We don't normally juggle posts around, BUTT being a newbie ...
it will make it easier for you to get everything in one place !

Cheers and best wishes to you and Hubs
CRguy on the Journey

[Eternal optimist]

Hi Sarah,

My understaning of UK treatment for stage 4 bowel cancer is that you will get chemo first, before any operation. This will probably be folfox- oxalyplatin and capecitabine or 5fu. It is possible that your husband will be offered another first line treatment instead, but they are all from a standard list so you can recieve/start recieving this at your local hospital rather than delay treatment by transferring hospitals or getting a second opinion at this stage. If you want to you can pay to recieve additional treatments on top of your NHS treatment, e.g. Avastin (which is no longer available on the NHS)- this is the cheapest way to recieve additional treatments rather than going privately.

I would recommend transferring to or getting opinions from a larger/london hospital down the line, but the first priority is starting chemo. There are lots of hospitals that are well regarded for bowel cancer, depending of where you are based there may be one closer to you (e.g. Basingstoke is well known for surgery).

I dont know if we can give negative opinions about hospitals on here? Apologies in advance if we arent supposed to! I was referred to the Marsden bowel cancer Surgical team about 18 months ago for my operation (as para aortic node surgery is more complex) and they were very negative- they basically declined to operate due to my para aortic spread, and advised my local hospital not to either. They were also overloaded and had long waits for suegery. Fortunately my local disagreed and carried out the operation themselves.

The Beating Bowel Cancer forum is UK based. It is more about emotional support (I prefer this one as it is more about treatment ideas!), and very friendly. Shine is another good resource, they are for young people affected by cancer. They have a facebook group for people with cancer and another for family members. The one for people with cancer has lots of bowlies and is a good place to ask questions about treatment options, hospital recommendations etc.

I also live near London, and am happy to give you any advice or support as you want it.

[Jacques]

...You might want to search and read some of my previous posts, too.

Here is a link to all of rp1954's previous posts:
http://coloncancersupport.colonclub.com/search.php?author_id=41553&sr=posts

If you want to search for specific topics by keyword, you can then use the Search box that will appear near the top left of the page after you have clicked on the above link. In that box you will see the phrase, "Search these results". Just replace that phrase with a valid keyword and click on the tiny magnifying glass icon to the right of the Search box. This will give you a subset of rp1954's posts that contain the specified keyword.

Technical Note: For the default ColonTalk search engine, a valid keyword must be an alphanumeric string with at least four letters or numbers (no special characters allowed). Keywords with only two or three letters are ignored by the default search engine, so there is no point in searching for things like CEA, CBC, ALT, AST, LDH, AFP, ESR, PTT, etc. alone, because they will just be ignored. However, the search engine will in fact search for two or three letter words if they are enclosed in double quotes, for example, "CEA", "LDH", etc. (But please note that if the search is done with double quotes it will usually take longer because the presence of double quotes will then trigger the advanced search engine that does a brute-force search instead of the shorter, indexed search.)

Here are several keywords that you can use to obtain subsets of rp1954's posts:

• Use the keyword BIOMARKER* to get a representative list of rp1954's posts pertaining to various blood tests that he has discussed in the past. Note: this 10-character keyword contains a wildcard asterisk at the end so that it can find any posts that have words starting with the nine letters BIOMARKER.)
  Then if you want to know more about the various biomarkers being discussed in these posts, you could go to the Life Extension Foundation website to look up the descriptions: http://www.lifeextension.com/Vitamins-Supplements/Blood-Tests/Blood-Tests
• Use the keyword SUPPLEMENTS to get a representative list of rp1954's posts pertaining to various supplements and alternative medications that he has discussed in the past.
• Use the keyword AORT* to see rp1954's posts relating to aorta and aortic topics. (Note, this 5-character keyword contains a wildcard asterisk at the end so that it can find any posts that have words starting with the four letters AORT.)
• Use the keyword CIMETIDINE to see rp1954's posts relating to peri-operative use of CIMETIDINE.
• Use the keyword CELEBREX or the keyword CELECOXIB to see rp1954's posts relating to the peri-operative use of CELEBREX/CELECOXIB

Note: Make sure that your keyword is spelled correctly. In particular, make sure that your spell checker has not replaced your entered keyword with some other word.

[Fighting4hubs]

Thank you so much for your replies.

I have been awol on here for the past 5 weeks as so much has happened!
Chris was able to get 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 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)

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