How long of a wait for treament from time of biopsy?

ACinNC said:

It's understable to be so

It's understable to be so frustrated at the delays but try not to fret that the cancer is growing while you wait.  It took  a long time to get to the point of being detected and the 2 to 3 additional weeks aren't going to make it unmanageable.  I'll add my experience.  I had a CT scan right after I found out by biopsy and didn't start radiation for about one month and the CT scan done then did not change. Also, later on I had a suspected lung met that they watched for about 6 to 8 months and it grew rather slowly.  It was another 2 or so months before I had it treated. The onc suspects the lung met was there at time of initial diagnosis and so having it there did not make it spread further. 

Did you have a PET scan done?  If not, I would insist on one before treatment.  If you did have one then to ease your mind you might ask for another CT scan.

Your doctor probably has little to do with the scheduling in the radiation dept.  If your radiation center is a busy one they have to have slots available to treat you and perhaps someone is finishing theirs in 2 to 3 weeks.  But if I were you I would get in touch with them directly and ask why they can't work you in sooner.

Waiting can be agony and worry will only add to your distress.  There are many ways that can help you cope.  You probably know ones that work for you. For me, I had a prescription for Ativan to eae the anxiety.  I'm not endorsing pill popping but if you get really anxious it's something to ask your doctor about. 

No, I did not have a cat scan.  Just a ct scan.  The radiologist has asked if I wanted one but said it was not necessary that he could work with the ct scan.  They also took another ct scan at radiology....something to do about lining me up?

I guess I'm being very impatient....like I'm the only one with a health issue.  This is just all so terrifying.  My husband has been very upset over it all also and worried for me.  

I'm taking oxycodone right now.  One pill a day.  At least it gives me about 6 hours of relief.  I've had pain in my butt since this all started which was another reason I was in a hurry to begin treatment hoping at least that pain would go away before all the other new ones began.

Thank you for your reply.

eihtak said:

PainInTheBum...

Ugh!!! Too bad, I'm so sorry that the date has been rescheduled for you to get started with treatment. That can be so very frustrating. I've learned a lot on my journey with cancer but one of the most valuable lessons has been one in patience. 

I was initially diagnosed at the end of January (2011) and between tests, labs, and other pre-treatment appointments did not begin until mid to late March of that year. In hind sight though, I had been having symptoms for probably a year prior but life was happening and I related them to other things until the pain and bleeding could no longer be ignored. 

I agree with ACinNC in calling to express your concerns and see if something regarding dates can change. While they may say no, you have nothing to lose in asking. Always keep in mind that no matter how your health care is paid for, whether out of pocket, insurance, or the state, your doctors work FOR you and you have every right to expect the best care possible from your "employees"...

Continue with your pain management and even ask for more if necessary, but as far as worry about this cancer growing over those couple of weeks, I would not. Many people go quite a long time with either a miss-diagnosis or getting treatment started. Obviously the sooner the better, but I would feel safe in assuming the outcome will not be changed by a couple of weeks.

Hang on...this craziness will one day be just a thing of the past and you will be the one sharing encouraging words to others in need.

katheryn

Thank you Katheryn.  I have a call in to my cancer doctor with a list of questions.  Maybe he can put some light on it for me.  You seemed to have had to wait some time so I guess this is not all that unusual.  One way I'm dreading starting treatment but in another I'm anxious to get it going so I can be done with it and start to recover.  I just turned 67 on the 28th and not getting any younger.  Want to enjoy life again instead of having this constantly on my mind (and my husband's).

Yes, I had symptoms for quite awhile before I did anything about them.  The bleeding was on and off for several years.  The discomfort though was maybe about since October.  By December I knew I had to see a doctor because it was becoming more constant than once in awhile and at the point I didn't want to go out anymore.  I had to put off making an appointment because in November my mother-in-law in another state had fell and was in the hospital.  She lived alone, 99 years old.  Up until this point she was walking, taking care of her herself and so proud of that fact.  We never could convince her to move by us.  She ended up passing away Feb 10th.  March 31st would have been her 100th birthday.  My husband and I drove 20 hours one way to go clean out her apartment and set her up with hospice.  My husband had to take 2 other trips there wihout me because I just couldn't handle the drive anymore.  40 hours with a painful butt was not fun.  I am glad though that I got to see her one last time and say goodbye.

eihtak said:

PainInTheBum...

Its smart to make a list as you think of questions and have it handy when you see or talk to your doctor...I hope you get answers to all of yours! You are correct, its not unusual to have to wait (for what feels like way too long) for treatment to actively start.

Kuddos to your mother-in-law on maintaining her independence for so long, and I am sorry for the fall she took. My dad had a bad fall at 86 and never quite recovered after that. He too passed away not long after.

That car ride must have been misery for you not only for the physical pain you were (are) in but the reason and emotional stress for the trip as well. During the year prior to my diagnosis my husband was being treated for a blood cancer (multiple myeloma) at a hospital 3 hours away and we made many trips back and forth during that time for his transplant. My pain grew increasingly worse on those trips and the 3-6 hours was nothing compared to yours! I can't imagine, you poor girl! Its funny what we can do, or just do, without thinking when we have to, and how nice that you did have that last visit with her.

I hope you hear back from your doctor soon, and please keep us posted as you continue...now go eat some ice cream, or some other delicious treat so this stress does not steal another ounce of you today!

katheryn

Got some good news today Katheryn!  After several phone calls to radiologist and cancer doctor's offices I now have an appointment tomorrow with cancer doctor and on Monday I start my first radiation treatment and also my first chemo!  Funny how just yesterday I went from 3-4 weeks wait for radiology to 3 days!  I have many mixed feelings but I know it's best starting as soon as possible.  The quicker it starts the sooner it will be over.  Keep me in your thoughts and prayers....I'm a BIG baby!

So sorry to hear about your husband.  Hope he is doing well now.  It does amaze me how much we can handle when we have no other choice.  

eihtak said:

PainInTheBum...

That is good news! I just know you'll feel better once actively doing something to treat this disease. There will be days of ups and downs and as I'm sure you've read, some of the days really suck. But...you'll make it, and by summer you'll be into recovery. You will surely be on my mind and in my prayers that all goes smoothly for you.

Thankyou for thinking about my husband..he has had a couple of set backs over the years and after the initial stem cell transplant went back for a full bone marrow transplant. A couple years ago he had a tumor grow out of the marrow on his spine that required surgery and radiation, but fortunately he is doing well today. Still monitored closely and in some mild pain, but overall doing good.

Enjoy your weekend, then ready...set...go!

katheryn

I'm glad to hear your husband is doing well now.  I worry about my husband's health all the time.  He is ok now but after a mini stroke scare last summer and having congestive heart failure and COPD I have always tried to take good care of him.  Now it's going to be his turn to help take care of me.  He has been my rock.  I try to be strong for him because when I'm not, I know it's hard on him.  When a person gets cancer he says it not only affects the person with the cancer but everyone who loves that person.  I am so thankful to have him to help me get through this and so sorry for others that are not that fortunate.  This August we will be married 49 years and since my diagnosis he has told me that he has never loved me more than he does now.  I guess that will be the only silver lining with this cancer.

mp327 said:

PainInTheBum

I'm glad you got the start of your treatment moved up.  I know you are not looking forward to it, but you will be done in 6 weeks.  Just take it one day at a time.  I wish you all the best and I hope you enjoyed the pizza!

Yes, enjoyed the pizza.  It's something we only do seldom since it's loaded with salt and bad for the heart.  3 more days!