Unfortunate new member

[DriestBread]

Let me just first start by saying I have a lot going on in my head regarding this, and am not entirely sure how to convey it into words.
Secondly I want to thank everyone on this forum. During my so far short journey with testicular cancer I have frequented this site quite often for information. I will tell my story and just have a few questions, both medical and psychological.
On August 29^th I was laying in bed and felt a lump on my left testicle that I had never noticed before. I went into the bathroom and really felt around and it seemed like something was really off. I told myself I’ll keep checking it the next few days to see if anything was different. On September 2^nd, things the lump hadn’t really gone down like I thought it would. So after googling “lump on testicle” my mind started to go crazy. I setup a Dr’s appointment for September 9^th. He recommended I go to get an ultrasound. Got that done on the 12^th and the Dr called me the same day and recommend I go and see a urologist/ On the 19^th is when I was officially told I have testicular cancer. We setup surgery for the 23^rd and everything went great. 9 days later and I am moving around better (still tough to wear anything but sweatpants with the surgical wound) but am doing just fine. On my pathology repot, it states I had a malignant mixed germ cell tumor with feature of teratocarcinoma. Diagnosed as pT1. No evidence of spread through spermatic cord. Contained to the testicle.
Now my urologist stated this was good news, as there is no proof it traveled through the spermatic cord, but said it is possible that a piece of the tumor could have “flaked off” and traveled up somewhere else in the body. And that it may not even show up on a CT scan until it grows further in the body. Is this a common thing? I cant find any information in regards to something like this. He requested I go to get a CT and chest x-ray, as well as follow up with an oncologist. What types of treatments are recommended for this type?
My tumor markers were:
Lactic Dehydrogenase- 170
HCG – 87
Alpha- Fetaprotein- 10.0.
It says in the labs that only the second 2 are considered “high”. From what I’ve read in other people’s stories, it seems normally all thee markers are generally higher?
My last question is more in regards to just how I’m feeling. My fiancé has stated that one all this is done, I will be a cancer survivor. I know and understand this is technically true, but I can’t help but feeling guilty saying it. I feel like reading about other cancers that I really haven’t had to go through much in comparison. I know there is probably more treatment to come, but I just can’t shake this feeling that I’m not a survivor. Maybe I’m just still in denial about even actually having it. I don’t know. I don't mean to downplay the disease in any way, as I know it is still serious, so I hope no one takes offence to these feelings. I'm just wondering if anyone else felt the same.
Sorry for the rambling, I wrote this at 3am this morning, but the site was down so I couldn't post. I appreciate any future input and please let me know if you need any other info to answer my questions. Thanks again.

[Changus]

Hey there - there's a lot of people here much more knowledgeable than me but I can give you my experience and take on things.

Bloodwork can sort of be all over the place when it comes to TC. My markers were very similar to yours. I had normal LDH levels as well. My AFP was higher than yours but my HCG was lower. Some TC types don't give any indication through blood at all and patients will maintain normal levels throughout. Someone here can correct me if I'm wrong, but I believe that generally, the higher the markers, the "worse off" you are. Again, some people don't see any raise in markers so it can be difficult to tell on occasion.

As for the psychological part, that I understand completely. I see some people with TC (or other cancers) really out there fighting, and here I am, a "survivor" but I haven't really felt bad at all, except for after my surgery, and the I/O was pretty easy for me. I ended up coming to terms with this because we ARE survivors. We were lucky enough to get this early on. But make no mistake, you had something in you that if left unchecked and ignored, may have eventually killed you. I likely have an RPLND coming up, and I am sure that afterwards, I will certainly feel like a survivor. If you have additional treatments, I think you will definitely feel like one as well!

[_steve]

Hey there,
It will take time to piece together different testis cancer cell types (there are many), their corresponding blood hormone marker, and the spectrum of treatment type, intensity, duration and all that.

You're on the right path. Hormone markers, CT scans, pathology results and chest x-rays are all used in the staging of the cancer. The staging process seems agonizingly slow.

Broadly put, once a few weeks go by and your steady state blood levels come into focus, and CT/X-ray scans are complete, you may end up in one of these cases:

1. no lymph node enlargement, blood markers return to normal.
Options: surveillance (do nothing). 20-50% chance of reoccurrence depending on a variety of factors. Or, some low number of chemo cycles as a preventative measure.

2. lymph node invasion. Sustained elevated markers.
Options: chemo, radiation, with or without RPLND. Duration and recipe all subject to doctors interpretation.



You don't need to suffer a great deal to be a 'cancer survivor'. 40 years ago this diagnosis was a death sentence. Through the great work of modern medicine and a few hero doctors, cure rates are very high.

[jpboucher]

Hey,

Are your tumor markers being done before or after the surgery ? If it was before, do you have post-orchiectomy values of your markers ?

About 30 % of "confined to testicle" tumors are in reality disseminated in lymph nodes principally.

Wish you all the best,

Jean-Philippe

[Davepet]

Now my urologist stated this was good news, as there is no proof it traveled through the spermatic cord, but said it is possible that a piece of the tumor could have “flaked off” and traveled up somewhere else in the body. And that it may not even show up on a CT scan until it grows further in the body. Is this a common thing? I cant find any information in regards to something like this. He requested I go to get a CT and chest x-ray, as well as follow up with an oncologist. What types of treatments are recommended for this type?

You say it was a mixed tumor, but you only mention one type of tumor. what other types are present?

You absolutely need to see an oncologist and get a CT scan, these are standard procedures for any case of TC.What your doc meant by "flaked off" is that it's possible the cancer metastasized but left no indication the pathologist could find. Virtually everyone who has a "recurrence" has had this happen, I wouldn't say it's common, but it happens. This is why if everything looks clear & you choose surveillance, you need to stick to the schedule without fail. Surveillance is not "doing nothing" some guys actually find it more difficult than getting chemo. Surveillance will catch any new growth in plenty of time to eradicate it safely.

As far as the mental part, you had cancer, you had surgery, you lost a part of your body for the rest of your life, even if your treatment ends with active surveillance, once you get an all clear, you *are* both a warrior and a survivor.

Dave

[Sdaniel]

Sounds like you found it early, good news. From here you get the choice we have all had and trust me, there is no right answer. Some get adjuvant treatment, others surveillance. Some relapse, some do not. Numbers are that... numbers... nobody can tell you which side you will be on and that sir is the scariest part of what we have all been through.

T cancer is treatable and you have done everything right. The mental part was my biggest struggle, I haven't always had an easy life and thought I was tough but man I really crumbled in the months following diagnosis., I spent 8 months fretting and letting myself fall apart post i/o... wasted a lot of time and my wife experienced our first pregnancy with a husband a shadow of himself ... I was finally healing mentally and getting my life together when I relapsed.... here I could have crumbled but I dug in... and feel much stronger now. I pride myself on that title *survivor* and use it whenever I discuss what happened to me. You will get there too, we all have a different time table for when we can mentally process *oh s*it... I have cancer* ...

Try not to dwell on it, take each day a step at a time, and live. Follow up with your docs and do everything they say and you will be just fine ....

[DriestBread]

Good afternoon everyone, I appreciate these answers that everyone gave. Sorry for the long leave, been a crazy few 5 months dealing with this and planning a wedding. So here's an update on where I am, what ive done and some questions on maybe whats next?

So my initial Tumor was 45% Embryonal Carcinoma, 45% Teratoma, and 10% Yolk Sac Tumor. After initial I/O, all my tumor markers normalize. CT scan came back as positive in the lymph nodes and B-HCG started to rise again. Direct from Radiology report---

"Index nodes are at the distal aorta near the bifurcation and measure up to 2.3cm transverse x2cm AP. An SI Aggregate measurement is 5cm. The cranial most node measures .7x1.5cm. There are also multiple mildly enlarged and borderline indeterminate right mesenteric.ileocolic and pericecal nodes index 1.4x.7..
3.7x2cm soft tissue implant versus asymmetric muscle slip projects posterior to the right hepatic lobe. "

This was done on 10/25. Started 3x BEP and finished last bleo on 01/10/17 (Of course couldn't finish on last years insurance out of pocket lol)

That bring us to this week. I've been feeling great, fatigue hasn't been a big problem and now have hair again! I had my first Follow up MRI or the Abd+Pelv with and w/o contract on 3/29/17. When I went to meet with the Dr on the 30th to get the results, he wasn't quite sure how to proceed. The tumor definitely looks like it shrunk compared to the first CT. The thing that has confused both him and the radiologist is that the area where the lymph node tumor is appears to "glow" on the MRI. They say it looks like either fat or scar tissue? Has anyone ever heard of this? As of now he said they are going to send it to the tumor board for recommendations on the 10th. Does anyone have an idea of what the next course of action may be? The oncologist is leaning towards a repeat scan in 3 months but wants the tumor boards opinion. The MRI reports lists the following for comparison:

Impression:
1. Interval decreased size of the dominant conglomerate of periaortic lymph
nodes at the level of the distal aorta. Other lymph nodes are similar to
mildly decreased in size as well. No specific MR evidence for new metastases
involving the abdomen and pelvis as discussed.
Comparison: Outside CT 10/18/2016.
FINDINGS: The previously described 2.3 cm conglomerate of periaortic lymph
nodes at the level of the distal aorta has decreased to approximately 1.6 cm
(series 10, image 39). This now predominantly demonstrates T2 hyperintensity
without associated enhancement suggesting cystic or necrotic components.
The previously described 0.7 x 1.5 cm lesion at the level of the SMA takeoff
is not significantly changed to perhaps 1 mm decrease in size (series 46,
image 50).
Likewise, the conglomerate of right mesenteric/ileocolic and pericecal lymph
nodes measuring up to 1.4 x 0.7 cm has decreased to 0.9 x 0.4 cm (series 46,
image 80). The previously queried soft tissue implant versus asymmetric muscle
slip posterior to the right hepatic lobe does not demonstrate restricted
diffusion and has more the appearance of an asymmetric muscle slip on MRI. No
new bulky enlarged symptoms within the abdomen and pelvis

Thanks Again to everyone for helping, even though I haven't been on replying, I have found comfort in these boards and the people over the past 6 months of my journey.

[DriestBread]

And to add in case it makes a difference on opinion, all of my tumor markers came back normal on 3/30/17

[jpboucher]

Have your medical team talked about an RPLND ? It's usually done when lymph nodes are still larger than 1 cm after induction chemotherapy.

Jean-Philippe

[jpboucher]

Have your medical team talked about an RPLND ? It's usually done when lymph nodes are still larger than 1 cm after induction chemotherapy if tumor markers are normal.

Jean-Philippe

[Davepet]

I hate to say this, but with 45% teratoma in the original tumor, it seems likely they will want to do an RPLND. Teratoma is unaffected by chemo, and while it is technically not cancer, it can transform into some nasty cancers that are not as treatable as TC.I'm pretty sure the only way they can really know what's going on at this point is the surgery.

Dave

[Trekga]

Glad your markers have normalized. Was 3/29 the first post chemo CT Scan? Will they order another CT Scan? As Dave mentioned having 45% Teratoma, might be leading you toward RNPLND.
Keep us updated.

[DriestBread]

Yes the 3/29 scan was my first one post chemo. I was originally referred to a different oncologist who, at the time, thought and rplnd might be my first option. He referred me to the Mayo Clinic in Arizona. The surgeon, dr castle, looked at everything and said chemo should be first. With the original being 45% teratoma I had been expecting rplnd to be the next step. But when the doctors weren't to sure I'm just left waiting again. Got a call from the oncologist today, he said the tumor board reccomends a repeat scan in may. Planning to marry in August, if rplnd is pretty much guaranteed to be needed I'd rather do it now and recover as opposed to closer to the wedding.

[Davepet]

Well, they are probably hoping it shrinks more & you can avoid the surgery. From a medical point of view, that's probably a good way to proceed.If you do indeed need the surgery, getting it done in May should still give you enough time to heal by August.I would discuss this with your doc & see if you can get on the surgical schedule shortly after the scan date, it can always be cancelled if it's not needed.

Dave

[DriestBread]

Thanks for the input Dave! My rescan is scheduled for May 15th. So hopefully all goes well and I can avoid the surgery all together!