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My Mom has been diagnosed with Lung cancer in both lungs.

christsj
Posts: 17
Joined: Jun 2009

She went into ER for pain in the stomach and they took an chest xray, stomach and intestine CT Scan. Then they told her three tumors, 1 on the right and two on the left. Her PCP sent her to a pulmonologist. He called for a PET Scan and breath test and a bronical biopsy. She takes blood thinners so she had to be off of those 7 days before they could do the biopsy. All that is done and we are told he needs to do a needle biopsy. That was a week ago. Haven't heard when the needle biopsy will be done and since he let her go back on blood thinners she will have to wait 7 days before they can do it. Is it me or is this not going right? I am sooooooooooooooooooooo worried!

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

The waiting is indeed the hardest part, to borrow from a Tom Petty song. I would say that you should devote your concerns to mom's well-being rather than to the wait. The wait, I am saying, is not so unusual.

It seems that cancer is quite popular, particularly, I think, as the general population is aging, relatively speaking (us so-called Baby Boomers), and so doctors and hospitals and specialists and specialty treatments (scans, MRIs, and so forth) are in huge demand. Thus, the need for a schedule that may sometimes seem unreasonable.

In my own experience (lobectomy in Jan of '08) the wait does not seem to impact the spread of cancer or the ability to treat it, not in any dramatic way (I would change my mind under certain cirumstances, for example a wait that lasted six months or a year).

I am assuming that your mom's doctors have her best interests in mind, are aware at least to the point of supposition, of the nature of the tumors and how fast they are likely to grow, and are considering already the potential treatment options.

In the meantime, it may be that the tumors are too small to biopsy, and so they are allowing them to grow (this was my experience with my single nodule, incidentally, and even when they did take it out, they could not determine whether it was metastasis or new cancer). It may be that they want to see if they DO grow, which is to say, tumors are not necessarily malignant and do not even, necessarily, grow.

As I understand it, they have performed a biopsy, but now want to perform a needle biopsy? This indicates they have some doubt about one or more of the tumors and this is, or may be, quite critical (is it cancer; if so what kind of cancer; one lung now or still both;)...all of these and more, these issues can be matters of life-saving treatment, frankly, versus palliative care.

If your mom trusts her doctors, then go with their decisions. Unless they are corrupt or incompetent, their aim is to provide the best possible care for your mom.

Conserve your energy: devote it to time with mom, to helping her to deal with the potential consequences and the current reality that you simply do not know precisely what is going on.

Very often, not knowing is the most frightening thing, as I think you are understanding yourself.

Best wishes to mom and her family.

Take care.

Joe

dawnamelia
Posts: 2
Joined: Jul 2009

Joe, you seem so know so much,
I'm sooooo new to this, tomorrow is my dad first treatment to chemo, I don't know what kind or anything, all I know is that he had what they call adenocarcinoma stage 4. I have never know anyone that had any kind of cancer of anything. My dad short term memory is getting bad, my mom is so upset and cries alot. I decided to start going to my dad's appointments to find out what is going on. When the dr. ask if we have any questions neither one of my parents say anything so it is up to me to ask questions and I don't know what to ask. Can you help me with maybe questions to ask.

I have been reading some of the post here and everyone seems to talk about different chemo's and different stages and I'm lost.

All I know is the Doctor told my dad he will be doing 3 different chemo treatments and then do another cat scan I think. I have been taking notes when I go in. My dad has lost 10 lbs in one week, he is not eating the same. He used to go walking a couple of hours a day, go to the fitness class at the local rec center, go to masons meeting and go to the flea market every week. Now he can't even go to the mailbox without resting. The doctor put him on oxygen now. I know his cancer is in both lungs all over. I seen his xray and to me it looked like popcorn all over and next thing I know the doctor is saying stage 4 and I'm thinking what happened to the first three stages????!!!

Sorry to bother you, but don't know where to go and just maybe talking to someone outside the family has a clear view point.

Thanks for any reply from anyone.

Dawn Tyler

dawnamelia
Posts: 2
Joined: Jul 2009

Joe, you seem so know so much,
I'm sooooo new to this, tomorrow is my dad first treatment to chemo, I don't know what kind or anything, all I know is that he had what they call adenocarcinoma stage 4. I have never know anyone that had any kind of cancer of anything. My dad short term memory is getting bad, my mom is so upset and cries alot. I decided to start going to my dad's appointments to find out what is going on. When the dr. ask if we have any questions neither one of my parents say anything so it is up to me to ask questions and I don't know what to ask. Can you help me with maybe questions to ask.

I have been reading some of the post here and everyone seems to talk about different chemo's and different stages and I'm lost.

All I know is the Doctor told my dad he will be doing 3 different chemo treatments and then do another cat scan I think. I have been taking notes when I go in. My dad has lost 10 lbs in one week, he is not eating the same. He used to go walking a couple of hours a day, go to the fitness class at the local rec center, go to masons meeting and go to the flea market every week. Now he can't even go to the mailbox without resting. The doctor put him on oxygen now. I know his cancer is in both lungs all over. I seen his xray and to me it looked like popcorn all over and next thing I know the doctor is saying stage 4 and I'm thinking what happened to the first three stages????!!!

Sorry to bother you, but don't know where to go and just maybe talking to someone outside the family has a clear view point.

Thanks for any reply from anyone.

Dawn Tyler

christsj
Posts: 17
Joined: Jun 2009

Thank you!!

PBJ Austin
Posts: 346
Joined: Mar 2009

Did they actually say with certainty she has cancer or did they just find tumors and recommend a biopsy? I also went to the ER with pain and after the CT scan the ER doctor told me with 90% certainty I had cancer. But after 2 biopsies they can't find cancer so I am now being treated for a lung infection. I'm not saying your mom does or does not have cancer, but until biopsy results are back you cannot be sure of anything.

No matter how quickly they get her in it will seem like it's taking too long. When they told me it would be 3 days before my first biopsy I cried, wondering why they couldn't do it that very day. I realized later that there are a lot of people in the same boat who are anxiously awaiting their results and they got me in as quickly as possible. In the meantime try to keep as busy as possible with constructive and positive activities. Whatever you do, do not surf the internet to try and figure it all out for yourself. I made that mistake and it only makes things worse. Much worse.

Good luck and please keep in touch with the results, we really do care.

gailwill
Posts: 1
Joined: Jul 2009

What is your mom's blood sodium level?

My mom was admitted to the ER when she was so weak. Blood tests showed her sodium level was 109 - they were surprised she wasn't in a coma. The low sodium levels relate to a 70% chance it's cancer somewhere in the body. A contrast CT scans showed she has 3 lesions, one in each lung and one in the middle. The hospital dr wanted to do a needle biopsy, but she was discharged before it was done (she is also on blood thinners). The hospital doctors only hinted that it could be cancer - it wasn't until we saw her PCP who told us he was 99.9% sure it was lung cancer.

He advised not to put her through a biopsy, just to keep her comfortable and to contact hospice. She is not really having symptoms (except for the low sodium). I have mixed feelings about more diagnostic tests. But I want a more definite answer and she does not (she is 82).

christsj
Posts: 17
Joined: Jun 2009

I don't know her sodium levels but will see if we have a copy of the blood test. They did a bronical type biopsy and no cancer. They now want to do a needle biopsy on the two places that lit up on the PET scan. The Pulmonologist said there is no doubt it's cancer they need the biopsy to find out what kind so they can treat it.

I just don't see why they are taking so long to get through this. I know it's bound to seem slow but it's been a month or more now. I hate this for her and for me!!! Thanks for being here guys!

PBJ Austin
Posts: 346
Joined: Mar 2009

christsj, was it a broncoscopy they did that showed no cancer? This scares me because I had both the needle biopsy and the broncoscopy and neither revealed cancer, but I did not have a PET scan. I discussed that with my pulmonologist and he said the PET scan sometimes gives false positives. That's not to say your mom got a false positive, I really don't know.

Good luck to you and your mom and please stay in touch, I'm anxious to hear how this goes.

christsj
Posts: 17
Joined: Jun 2009

Yes a Broncoscopy. It shows they didn't find cancer in the "trees" of the lung. Now they want a CT Scan and then a needle biopsy for the masses in the lung itself. In my opinion I see no need for a Cat Scan now, it should have been done right after the Xray showed something. It's like they missed a step and are doubling back. I know I'm not a doctor but it is so irritating!! She has had Xrays, Pet Scan, breathing test and Broncoscope biopsy. They saw it on the Xrays and Pet Scan, breathing test was 85% (not bad for 83) and nothing in the Bronoscope. The not knowing is agony for her and the family. I have decided for me that I will assume it is cancer and if it should turn out not to be I will celebrate but if it is maybe it won't be such a shock. I am her confidant I have to stay strong for her. Okay, now I rambling. Thanks again and I will keep ya all updated.

PBJ Austin
Posts: 346
Joined: Mar 2009

I do understand about the not knowing, it is awful. When my needle biopsy and broncoscopy came back negative they gave me antibiotics, thinking it's an infection. I was so hopeful the antibioitcs would work, but after 2 weeks on antibiotics there was no shrinkage in my 6 cm mass. After the broncoscopy they sent samples for infection and fungus testing but that takes 4 weeks and I won't have my results until next week. If I test negative for those, then they are recommending surgical removal of the mass which involves the loss of part of my lung, and of course they will biopsy the mass after removal.

In my case the doctor is now saying it's unlikely to be cancer but that is far from a sure thing until a diagnosis comes through. So like you, I've been on pins and needles for a month, awaiting some kind of results. I feel like my life is on hold and I hate this.

Thanks for letting me vent. You all are in my heart and in my prayers every day.

christsj
Posts: 17
Joined: Jun 2009

Still no one has called my Mom with an appointment for the Cat Scan or the needle biopsy...I just don't understand what the hold up is. Whenever they set it she will have to be off her blood thinners 5-7 days after that...I am so angry on the inside.

PBJ Austin
Posts: 346
Joined: Mar 2009

I would call today and demand that an appointment s/b set up ASAP. Sometimes you have to get b*tchy to get things moving. If they still drag their feet, perhaps you could look for another doctor? Good luck and please keep us posted.

christsj
Posts: 17
Joined: Jun 2009

The problem is I can't make the call. If they tell my Mom she would be very upset and right now she would look at it as though I didn't think she could do it herself. But at least they finally called and set it for August 11, 09. Thanks everyone.

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