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Ct scan results it's back. Advice please

jayqlds
Posts: 12
Joined: Dec 2016

Hi everyone am a regular here but not a contributor my knowledge is limited But learning everyday. my diagnosis oct 2013 chromophobe rcc. 10cm T2 nxm0 I have had ct scans with contrast all NED till my last one today. The report as follow enlarged node 2cm at axilla confirmed as metastasis. Low volume slightly enlarge nodes at medistinal and hillar area. All other area nothing to report .   i need advice surgery or else.  anyone had a surgery of the nodes above what was the surgery. Help please.  

stub1969's picture
stub1969
Posts: 888
Joined: Jul 2016

Welcome, Jay.  Question: When do you meet with your doctor about the results?  I'm curious as to what your doctor has to say about the results.  I'm hopeful that you are seeing a doctor that specializes in RCC.  I don't have a lot to offer for advice as my tumor was found this fall and I had a partial on the 26th of August.  Mine was chromophobe, also.  Take care and keep us updated.

Stub

Dutch1's picture
Dutch1
Posts: 152
Joined: Mar 2014

Agreed that your doc (oncologist, I presume) has to weigh in on the report.  I think I understand from your post that you've got a small spot that's suspicious.  My experience is that surgery isn't always the first response.  For me, it was a change in medication.  The small spot has been watched and, until it becomes larger, surgery or radiation isn't going to be considered.  You've got a real good chance that medication will control the new spot.

Best wishes to you.

 

Dutch

jayqlds
Posts: 12
Joined: Dec 2016

I haven't seen an oncologist yet it take time here in Australia but my surgeon who has been dealing with rcc for 20 years.  Read the report &  refered me to oncologist. one is 2cm & the other are 9mm.   It's definitely cancer. i just want it out of my body.  

Dutch1's picture
Dutch1
Posts: 152
Joined: Mar 2014

Jay, for a 2 cm spot, I can see your point about wanting to have it surgically removed.

Dutch

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Jay, I think it's not an easy decision to take it out. Although we all want them out of our body, doctors Ned to make sure that place of those nodes are accessible so they can reach them and take them out safely. Sometimes the best option is to put the patient on treatment or change in medication. I've seen some members whose Mets are gone after being on medication for a while and also those who've got them shrinkedor stabled.

Maybe a surgeon oncologist could help you to find best solution

Wish you best

jayqlds
Posts: 12
Joined: Dec 2016

am waiting for that oncologist appointment to come through so we can sit down plan but the choice I have are very limited since am chromophobe not a lot medicine for this type. So I think is to manage it by cutting it out if it can be done see what pops up if am lucky I'll get few years like  Donna. am finding it very hard to focus on anything but this i am in 30's with 3 year old  and dealing with this. It just suddens me a lot to think i won't be around to see him become an adult. Am sorry am saying a lot but here is where I let it out and get advice from people  who have on this path before me    forough 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

At first anyway. These days its more of a life changing rather than a life ending disease especially with a 2cm lump. Having said that I would want to have it removed asap.

I would happily put money on you seeing your son graduate from college

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Jay, my tumor was 10 cm, and I was 36 years old, 28 months ago. Since the very first day I couldn't spend a day not thinking about what if it comes back. To be honest I couldn't spend an hour not thinking about it. Days and nights. So I do honestly understand how devastating it feels once it really is back. All I'm saying it that there are other options although not as much and as promising as we wish for but there are still hope out there. I really hope they can take it out surgically but don't lose your hope if they suggest other options. I know it's easier said than done. But sometimes hope is our last chance and those people who fight with hope have a much better chance to win.

 

jayqlds
Posts: 12
Joined: Dec 2016

Thanks forough do appreciate your advise. We are same age. i was 36 when diagnosed  10/2013   Same size tumur as you but I hope & pray it doesn't come back for you.   It's hard though just waiting for that apointment.  

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Thanks for your good wish

Yes we have almost same stories,  you're in my thoughts and prayers, please keep us posted, we'll all here to help in every possible way if you want us. Let us know how the appointment went.

Allochka's picture
Allochka
Posts: 946
Joined: Nov 2014

Jay, please try not to think about not seeing your baby growing up. please try to repeat to yourself that you need, and you will be around for him! Strength of will and love work wonders!

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Jay, how frustrating and frightening for you. Having to wait so long for help - and not knowing what the game plan is has got to be the worst.

Hang in there and please keep us posted!

Hugs

Jojo

jayqlds
Posts: 12
Joined: Dec 2016

Finally I have a date with the concologist on 23 December.   i have started to be positive and am working on it. Thank you all  your words are much appreciated.   FOOTSTOMPER   i will take you on that bet

Jay 

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Finally! And not tooooo far away. Good luck!

Hugs

Jojo

jayqlds
Posts: 12
Joined: Dec 2016

Thanks Jojo.  I have just received a call from the receptionist  its on 21 December 

regards 

Jay 

Deanie0916
Posts: 390
Joined: Nov 2016

for you as you await another appointment and uncertainty. Hope it all is good news.

 

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Good for you, cancellations and getting you in quicker, even. 

All the best --

Jerzy

jayqlds
Posts: 12
Joined: Dec 2016

 

I had an appointment with an oncologist on the 23/December. He questioned the ct result as metastatic lymphnodes. He just said is unusual to have 3 lymphnodes in different areas and grew this quickly as a chromophobe rcc recurrence he suggested just to rule out anything ( lymphoma) else he will do a biopsy which was done on 4/Jan went in for result on the 11/Jan. It come back as cell looking normal and negative for cancer but positive for lymphnode tuberculosis ( TB). My blood test showed high level of inflammation. Biopsy that was done was ( core kneedle biopsy) specimen was 12 x 1mm. He sent me to an infection deasease specialist to begin treatment and also booked me in for open excision biopsy of the axillary lymphnode an outpatient surgery I think. To be done on the 20/Jan. Hoping for better news. Tb is cured with 4 antibiotics taken for a long period of time. Have me in your prays

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

That sounds like excellent news. Happy new year

jayqlds
Posts: 12
Joined: Dec 2016

Hi everyone. My second biopsy result are negative for cancer but positive for TB. I have been prescribed antibiotics medication daily ( 13 tablets ) for six months that's how they treat TB. Am glad its TB which is treatable. I thank everyone for helping me cope with the first diagnosis from a ct scan which thankfully isn't as bad as they thought. God is great. I wish you all good results.

Jay

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