Newly Diagnosed, about to start Chemo

[Pavan]

Hi,

I too have been reading the forums, and am grateful for all the info and experiences which have helped get me through the last few weeks. You are all amazing guys!
I apologise if these questions have all been answered before, I'm just still in shock at the moment.

Would greatly appreciate some advice. I was diagnosed about 8 weeks ago, then had my right I/O 6 weeks ago. 2 weeks ago oncologist said I had stage 1 seminoma. They also said after CT imaging that the had been no vascular / lymphatic invasion, although there was a large mass which need further imaging (they thought it was a haematoma) I was put on a schedule of surveillance.

Today I went for an ultrasound and blood tests, met with an oncologist whom I'd never met and thought was just checking up to see how i am. He gave me the unexpected news that the mass was evidently metastatic 8x8x8cm approx in size, and that they want to star 3 cycles of BEP chemo ASAP. I've asked to postpone till Monday to try and arrange sperm banking.

Right now I'm just still in shock, upset and confused, really I have no idea what to think.
Would really appreciate some advice on how to cope, what questions I need to be asking, what I need to do to prepare for Chemo.

I'm at Mount Vermon in the UK, if anyone has any experiences there, would also be very grateful to hear from you.

Pavan
--------------------------
13th June 12 - Ultrasound
29th June 12 - Right I/O
Markers: AFP: 5 HCG: 13 LDH: 658
CT Scan no lymphatic invasion, clear.
25th July 12 : Diagnosis Seminoma, Surveillance
7th August 12: Stage II / III metastasis
Markers: AFP: 6 HCG: 2 LDH: 740
Chemo 3 x BEP stay in hospital

[bryce-ord]

At this point there are not many questions to ask. You know the cell type and the treatment. The next 9 week is all about just making it through chemo. The side effects and potential complications are well documented on the internet and the literature they will give you. In reality most of the answers you could need are here on the forums.

There is not much you need to do to prepare for chemo. Just realize that you are going to be out of commission for about 10 weeks. So take care of any thing you think you will need to do before stating chemo (Vehicle oil change, move furniture, fix the leaking tap...). Each person reacts different to chemo so you don't know what you should keep on hand till after your first cycle.

As for coping. That is the hardest part for most of us. You just need to realize you are going to make it through this. I know it seems like the would is ending right now, but after a few months it will seem like it happened a lifetime ago. I suggest reading peoples old posts on the forums. There is comfort in seeing how others were in the same place you are right now, 5-10 years ago, and are still here giving advice.

As for the your Oncologist saying you need to start chemo ASAP, don't let that scare you. That is what mine said too.

Here is my story:
My testicle started to hurt on March 1st, but there was no lump. 2 Days later it still hurt and a lump had formed. I went to the doctor a few days later. I live in Canada so it takes time to get an ultrasound. I was officially diagnosed on march 21st. On March 23rd a lump formed on my neck (in a lymph node). I had my I/O on April 2nd, by then I had 3 lumps on my neck. I go to see my Oncologist for the first time on April 5th (Thursday before long weekend). By this time I had 4 lumps on my neck, the largest being the size of a golf ball. At my appointment my Oncologist did not discuses treatment options, only cell type and potential start dates for chemo. He told me I was an emergency case and would need to start chemo ASAP. I was then informed that the local cancer clinic would be closed over the long weekend so he was looking into flying me to the provincial cancer centre so I could start chemo tomorrow. After he talked to the head of the cancer agency of my province, they decided that I could start BEPx3 chemo next week but would need to start oral chemo (Etoposide) that night (to slow the growth over the next 4 days). 9 Weeks later my oncologist told me I was "all clear" and that there was a 90% chance I was cured.

I know it is a very scary time right now, but you will be over this in no time.

[Pavan]

Thank you very much for that advice.

I think most of it is shock, especially the way they told me. They still haven't been forthcoming with staging, ct scan reports etc. initially it was stage 1, now they say it stage 2-3. I've been pushing for more specific information from the doctors but I guess it's really not important now. I need to prepare for the next few months.

Thank you, again

Pavan

[dihmy]

hi Pavan,
my situation is exactly like you. before three months i was on stage1 seminoma, i chose surveillance.

yesterday i had my first surveillance ct scan result and it was big shock, i am on stage 2c or 3.
they arrange a chemo appointment for me next week.

now im hoping that the three cycle of chemo will take care of it.

so as you can see we are on the same boat, and as bryce-ord said it will be just a memory. lets be strong my friend.

[ColdCanadian]

I'm in a similar boat 13 months out from the IO, with pure seminoma and a node size of only 3cm. I'm awaiting further tests which come slow in Canada but know this can be beat. It's the process and the waiting that drive a person crazy. Please continue sharing.
Thanks
Greg

[Pavan]

Yep, I've been doing as much research as possible and trying to be as healthy as I can before.

In my case, they had given me a good diagnosis (CT Scans all clear, no lymph invasion) and the shock of this second one is hard to fathom. It's as if they had completely Mis-read or witheld info. The issue is that I have a mass about 8cm big. They are being cautious I guess. Yesterday they told me they want to do a biopsy. The theory being that if it's not metastatic then good, if it is then I'm getting chemo anyway so risk of spread wont matter too much.

Dihmy, sorry to hear that you are going through the same thing. I read one of your other posts about blood tests etc. it would good to hear about your recent diagnosis and experiences.

Pavan

[hbr777]

At this point there are not many questions to ask. You know the cell type and the treatment. The next 9 week is all about just making it through chemo. The side effects and potential complications are well documented on the internet and the literature they will give you. In reality most of the answers you could need are here on the forums.

There is not much you need to do to prepare for chemo. Just realize that you are going to be out of commission for about 10 weeks. So take care of any thing you think you will need to do before stating chemo (Vehicle oil change, move furniture, fix the leaking tap...). Each person reacts different to chemo so you don't know what you should keep on hand till after your first cycle.

As for coping. That is the hardest part for most of use. You just need to realize you are going to make it through this. I know it seems like the would is ending right now, but after a few months it will seem like it happened a lifetime ago. I suggest reading peoples old posts on the forums. There is comfort in seeing how others were in the same place you are right now, 5-10 years ago, and are still here giving advice.

This is an excellent summary - probably the best I have read on here. Chock full of advice.

Best to you, Pavan, as you begin your journey. Where is your mass located? My husband had a huge mass, too, and with seminoma, it is very responsive to chemo. Chemo will take care of that mass, and quickly.

[Pavan]

Hi Heidi!

Thank you, Bryce did give very good advice. I think there is a lot of info around and it can be very overwhelming trying to assimailate what is relevant compounded by an already emotionally as well as physically exhausted state.

Not entirely sure the area, I think it's in the lower abdomen on the right, about 2 inches above my I/O incision. The signs are, backache, abdomen ache, headaches, and extreme lethargy. the doctors really haven't been great at disseminating info, perhaps it's a good thing, but there are a few things they gloss over, and the NHS being what it is, it's really hard getting hold of someone to speak to.


It's actually reassuring to hear about your husband, a lot of it sounds very similar, good to know that he is recovering well and on surveillance.

Having some more tests done this week, and just taking it one step at a time. This weekend I'm determined not to let it worry me. I'm not going to think about it at all.


Pavan