Why Won't It Go Away?!

[otherhalf]

Well, the results are in from his last scan and "there are a few 'spots' remaining". While the rest of the family/friends believe this to be "good" news, I don't! We just did the tandem transplant and waited three months and there are STILL spots?! It COULD be scar tissue (we've heard that before). IF it is cancer the bone marrow specialist said they could do radiation; however, his oncologist seems to feel differently. So only "a few 'spots' remain" why not do a biopsy and see if it is cancer? I asked that question and was met with "uh...I dunno, maybe they can't get to it" (from a medical professional) and "and what would you do with that information" from an oncologist! I would look into other treatment if need be, else I would not feel this urgency to do SOMETHING! How can you be viewed as over re-acting when you've been through this on an on going basis for over a year! I've e-mailed Dr. Einhorn before and I'll be doing it again. He has been in on this case and we went to visit him in the past. I thought this was one of the most curable cancers? I thought he was "lucky" it was this type of cancer.
I think I'm ready for some sort of support group. I don't think I can continue in this state of the unknowing. Does anyone have any advice? Another Dr. perhaps? Good support group in my area??
Thanks for everything. I'm glad I found this site.

[Scott]

Have those spots changed size from previous scans?

[Hopeful]

I know exactly how you feel. It's hard to get news after the stem cell that there are still 'spots'.

Here's a question, had he had a BHCG yet? Or can they run a different test to verify the findings that is/isn't active tumors?

You can go to the american Cancer Society webpage to find local support groups. There are also online supports groups where you meet in a chat room for an hour each week. There are ones designed for caregivers. Unfortunately, I haven't seen anyone for caregivers of folks with testicular cancer (that would be a nice one.).

Patti

[otherhalf]

I apologize for the delay in responding...

The scan he had in March was the first one after the Tandem Transplant. They have decreased in size from before the treatment. My hope was that they would disappear, not just shrink. So now we wait until the end of June for the next scan and then we’ll go over the results in early July.
I guess I don’t understand why he is “not a candidate” for RPLND. If they can remove tumors from other places and he is down to only a “few spots”, why not just take them out before they spread again? Are these unreasonable questions? I also don’t understand why we had to wait THREE months for the next scan. If it is growing, imagine what three months could do.
I have been to a psychologist who diagnosed me as clinically depressed. He wrote me a prescription and suggested I see a counselor. I thought I was doing so well. I believe I did in the beginning, then the first shock of the cancer still being there and now the “few spots” that remain. The uncertainty of it all is driving me crazy. I just want him to get cured. He was diagnosed in January 2005 and has not had a clean scan YET!!
I work with a man who also had TC and was diagnosed after my husband. He did his 4XBEP and when he recovered he responded to one of my e-mails that he “just want to get on with my life”. I wanted to so badly to respond that I did too! But I didn’t, I don’t send him e-mails anymore.
I know how scary it is to hear “he has cancer” and I know what my husband has gone through. My heart goes out to each and everyone of you. For us, the cancer lingers on and on. Honestly, 17 months later and I just don’t see an end to this nightmare. It’s like I’ve been holding my breath and now I just want to BREATHE! I NEED to. I know I will not completely relax when he DOES have a clean scan but there will be a great feeling of relief to hear he has a good scan. At this point I don’t know if that is cancer in his body or not. If it is, is it growing?
What is a BHCG? I don’t think he’s had one. If it is his blood count you are referring to that is a negative. He was diagnosed with Pure Seminoma and nothing has ever showed up in his blood. They do blood tests now every two months just to check his blood counts (red blood cells and white blood cells). For some reason they wont stay up since his Tandem Transplant. I have asked for a biopsy to see if the cells are active, and I was told “you don’t want to go poking around in there”. So, I sit and I wait, trying to prepare myself for ANYTHING and EVERYTHING. Only I know I am only fooling myself, I don’t think I can EVER prepare myself to hear he still has cancer. He is VERY tired and has expressed his wishes to NOT have anymore Chemotherapy. Myself, I am confused as to whether he should or not. If it hasn’t helped this far, what would be the point? The last treatment nearly did him in. But, I can’t see me just giving up and not doing NE thing at all. Now I’m getting ahead of myself, which is where I stay a lot. I’m either there or beside myself or even at times behind myself.
The medication and the Counselor will hopefully help me get through this next month until we see the Dr. to go over the results. If it’s good news, I will rejoice in the relief, even if only for a moment, else I don’t think I could bear the alternative.
I try to be strong and hard shelled on the outside, only here do I pour my heart out to complete strangers who have opened their hearts to me and have been more than willing to help me through my darkest days. Thank you all for all of your words of encouragement and for sharing your incredible stories with me and continuing to give me hope.

Patti

[dadmo]

Patti:
I wish I could say something to make you fear easier to be bear. Often people will ask how it was possible to deal with our son being sick and I have no good answer. All I know is that we can only take it one day at a time. You made it through yesterday and you will get through today. Tomorrow will have to take care of itself. I think you’re doing the right thing talking to a counselor, this is far too much weight to carry alone. The days spent waiting for information are the hardest but see if you can’t find a way to fill the waiting time with special things that you and your husband enjoy. Don’t forget to treat yourself to something nice, you certainly deserve it.
Billy

[Fish]

Patti:

I'm very sorry to hear how difficult things have been. Please know my thoughts and prayers are with you and your husband. It's unfortunate that some of your doctors don't have a better "bedside manner. I've always thought that if doctors had to face a personal battle with a life threatening illness, they would be much more sympathetic to what their patients are going through. I feel very lucky with the doctors that have treated me.

I'm glad you've sought out a counselor. I think everyone here will agree, cancer affects the caregivers (and family) as much as it does the patient. All of you who are supporting us patients (my wife included) deserve medals. I know I wasn't always easy to deal with.

It's very stressful to wait for results and even 2.5 years after my second TC, I still get really paranoid when I have to go for my tests and then wait for the results. I have, however, discovered that I often accomplish a great many things at those times, because I find projects to keep me busy and therefore distracted from worrying.

Remember, we're all here for you.

I'll be hoping to hear good news from you in the near future.

Regards,
Jim

[Karen]

Patti,
Sorry to hear what your husband and you are dealing with and how difficult the "watch and wait" is. Lean on us ANYTIME you need to release emotions. I'm glad you are seeing a psychiatrist to help you take care of yourself mentally so you can best help your husband. My thoughts and prayers are with you both.

[amorgan74]

Patti: My husband's treatment has not been as lengthy as your's but I do understand about those spots and wishing they were just gone. I had such a hard time for at least the first six months after the doctor said let's watch and see what happens, I think it's scar tissue. I was like, You think, excuse me Mr. Dr., you (and I) need to know. 100% whether or not it's scar tissue. It look a huge leap of faith on my part and a lot of patience to get through this. I still want results from these scans the next day not the next week. The nurses have always been good about my calling to check on labs and results when we didn't have to see the doctor and just needed the tests every month. I truly understand where you're coming from and what you're going through. If it gives you any comfort please know that you are not alone by any means with feeling like this. I will say a prayer for peace for you because I know how much it takes out of you to try and deal with this after everything you've already been through. April

[kollerjones]

Patti,

My husband's battle has been going on for three years with spots that never disappear. He also had a tandem transplant and spots remain in his lungs. He is scheduled for lung surgery 5/26. There was disagreement between the oncologists and the thoracic surgeon on when to go in. Surgeon wanted to wait longer. Oncologists wanted it done right away. The wait and see approach is to give the spots time to dissolve or to continue shrinking if they are non cancerous and dying off. Going in right away is to remove anything that might still be cancerous but with the risk of taking out more healthy tissue than needed if its not. You can only remove so much lung tissue and his lungs have already been compromised by the bleo and a collapsed lung - so it was a hard call to make. If the spots were still cancerous the surgeon reasoned that at least he'd know for sure what he was dealing with.

I am like you in that I drive myself crazy waiting. I want to know now. Do something now. I've grown accustomed to screaming in pillows and eating large quantities of dark chocolate in between mad cleaning fits.

A second opinion would not hurt, but arm your self with every detail of his treatment and diagnosis to understand it well yourself to get a good second opinion. Request copies of all of his tests and reports. You have a right to them. Once you understand your situation, you can become informed enough to come to terms with where you are. This has at least been my approach. We are in that same limbo waiting or his next scan 5/24 to see if the spots have grown or not. My husband is known to have mixed germ cell tumors including teratoma. Non seminoma. He did have an RPLND by the way - about two years ago. Included a bypass as tumors had grown up the vena cava into his heart. (Rare - now in the text books)

Hope this helps. If not, at least you know you are not alone.

Kim