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Kelly

Confused and new

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Hi everybody,

My name is Kelly and I am new here. Hope I'm posting in the right area. I'm from Canada and am 51 years old. I had a cold after Easter that lasted four weeks (so did everybody else, it was going around) and went to the doctor and found out that I have a mass or tumor in my right upper lobe.

Since that time of the chest x-ray, about three weeks ago, I have had a CAT scan, bone scan, brain scan (all ordered by a lung surgeon) and I am to meet with him on June 9.

How come he hasn't ordered a biopsy for me? Will he tell me about that when I meet with him?

Apparently the mass is large, the size of a golf ball. I've been a smoker on and off for most of my adult life, but the doctors keep asking me if I was exposed to asbestos or a toxin (I have no idea) .

Oh! Apparently my blood and urine work were excellent.

So, any ideas on why the surgeon hasn't ordered a biopsy for me, and what I can expect when I meet him on June 9th?

Thanks!

Kelly

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Hi, Kelly. I can't answer your questions, but I wanted to welcome you to the board. I'm sure others will be replying soon and might be able to shed some light for you.

It seems to me that each patient has a different experience in the early stages of diagnosis. My husband had a broncoscopy along with several scans. He was ultimately diagnosed with small cell lung cancer with extensive disease.

You've come to the right place for information and support. There are some really awesome folks on this board.

I'll be praying for you.

Lynn

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Thanks for your reply, Lynn! I'm sorry to read about your husband and will pray for him. It is a confusing time for me. I have read a ton of info on the Internet, know about the different types of biopsies and the two main lung cancers, but can't figure out why the lung surgeon cancelled the needle biopsy that my primary care doctor first ordered and why he hasn't scheduled another one. I know they did all those other tests to see if the cancer has spread and that that will determine the type of treatment I get, but don't they need to do a biopsy to find out which type of lung cancer I have first?

Guess I'll just have to wait to see.

I come from a large family and they are driving me crazy. I should never have told them until I knew exactly what was going on. Part of the problem is that I am single and am taking care of my mother, who has Alzheimer's. I am her sole caregiver. So, obviously they have lots of reasons to worry, but I just wish they would leave me alone until at least I meet with the lung surgeon.

Some of the older members of the family and their spouses had a meeting - without me at it - and the next day told me they were going to put Mom in an old age home, as obviously I can't take care of her anymore. Needless to say, right now I feel fine, just a little winded sometimes when I run up and down the stairs.

I think it was very rude of them to meet without me and then make all of these decisions without me. I know they have Mom's and my best interest at heart, but it still really upset me.

And then they've mapped out the rest of my life, in addition to Mom's, without even knowing what's going on with me.

Sometimes coming from a big family (six brothers, two sister, 17 neices and nephews, two aunts, countless cousins and their children) can be a royal pain. Even though I love them all.

Sorry for the rant.

Kelly

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Hi Kelly

I am from Canada as well and welcome to this site. The members here are great and can offer plenty of information. I am sure you will find out alot more information on your followup visit with your Doctor. As you get more information, please post it here in your profile and I am sure you will find other members with similar experiences that can help you through this journey.

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Kelly, rant away!! That's one really awesome aspect of this board. We understand. And it will help you to get things off your chest, too.

As far as your family, you may just have to tell them what you need from them (as opposed to what they think you need). Together, you all can probably come up with a workable plan. Good luck on the home front.

Lynn

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Hi Bruce!

Where are you from in Canada? I'm from Peterborough, Ontario. I've noticed you all have profiles, so I will figure out how to do that later today, as I haven't done one before or have been on a board like this. Just happy to be here, and will develop a profile later.

Cheers!

Kelly

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Goof morning Kelly. I am Canadian as well. You will see there are a number of us here because we find the people and this site very supportive and helpful. I have no idea why you are still waiting...and the waiting is SOOO hard. But hang in there and a treatment plan will be in place soon. Tell your family to hang in there and wait for that as well. I would be extremely disappointed if I thought "plans" were being made without me. Everyone will feel better once you know more and it will get better, I promise. Ask anything here and it will be answered. Hang in there

Sandra

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Hi, Kelly, welcome to the group! I see you've already met a couple of our other Canadian members. The head chemo nurse in my cancer clinic is originally from Canada, though she's lived in Hawaii for a number of years -- she's a jewel!

As to the question of why no biopsy yet, I can only guess that your tumor may be in a location that can't be reliably or safely accessed with a bronchoscopy or a needle biopsy, and the surgeon needs to plan another approach. That was my situation, and I was set up for a thoracoscopy, a scope procedure using a small incision between the ribs on the side. That's a minimally invasive procedure with a short hospital stay and generally quick recovery. Unfortunately, in my case the tissue samples taken via the scope procedure were inconclusive, so while I was still under anesthesia the surgeon transitioned to a thoracotomy, using the small incision as a starting point, and obtained positive tissue samples in that manner.

My hospital stay was four days instead of the planned five days, and I had no complications during the recovery, but I would not have been able to care for someone else for the better part of a month. The link in my profile will take you to a more detailed version of my medical history. Send me a PM if you'd like any more info, and let us know what the surgeon says on the 9th.

Aloha,

Ned

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Welcome and I'm sorry I can't answer your question but hopefully you will find out all the answers when you meet with your doctor, the waiting is the worst part of all of this it seems. Family...it is an interesting subject for all of us I think, but if ever my six brothers and sisters decided to plan my life or my mother's without including me...well those are fighting words I'm afraid! Be honest with them and just have them make no plans until you know what is going on, hard but the best plan for all I think.

There are really great people here to listen, answer or just be here!

Deb

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Hi Kelly - another fellow Canadian here. It seems that you have received a good deal of pre-testing and that is good. You should get information from all those tests at your meeting with the surgeon and from there a more definitive plan will be put in motion. Some advice for that meeting would be to take someone with you to jot down notes or take a tape recorder as trust me, you will forget 80% of what is said (I know I sure did). Also, I wrote down questions as they popped into my head before the appointment and asked him then. I remember all too well the anxiety of waiting for treatment to start and I am sorry you have to go through that.

As to your family - I don't know the entire situation, but I hope they were just trying to lighten your load emotionally while you are going through this. I am a total control freak so I totally understand you being upset about them going behind your back and making decisions without your input. Hopefully you can all discuss this and come to a decision that feels right for everyone. Having said all that - there is absolutely no reason that any decisions need to be made right this minute so perhaps they can ease off until you have more information about what your treatment plan will be.

Take care and keep us posted o.k.

Linda

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Hi Kelly:

I have had 2 bronchoscopies and 3 needle biopsies, all of which were inconclusive. The only way they found out what kind of cancer I had was to cut it out with a wedge resection, analyze it on the table and then cut out the rest of the affected lung tissue when it was apparent the mass was malignant. I have had two surgeries in which the upper left lobe was removed and then a year later, the lower lobe was removed. Maybe your surgeon wants to cut to the chase and just take out the mass and go from there. I would ask if a full body PET/CT scan could be done just to make sure there is no cancer in distant organs and lymph nodes. The cat scan, if it covers the chest and abdomen, would show any nodules in distant organs and large lymph nodes, but a PET scan would show whether any of the nodules light up or not. If they light up, they are growing fast and may be malignant. I think your surgeon is trying to make sure you have a localized cancer. If he is satisfied that it is local, he may talk to you at your next appointment about cutting it out with a wedge resection and then do further surgery on the spot if it is found to be malignant.

I think the chances are that is local since it is golf ball sized.

Don M

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Welcome Kelly. My experience was pretty similar to yours. I had a chest XRay preceeding minor o/p surgery and it showed suspicious "blob." My Primary Care doctor ordered a CT scan and sent me to a pulmonary specialist. He was pretty certain that it was cancer and offered a needle biopsy and a referral to a surgeon. The surgeon ordered a PET scan and the only spot that lit up was the one seen on the XRay and CT scan. He said I could have a needle biopsy if I chose, but he was willing to go ahead and determine the kind of cancer from a wedge resection. If the samples weren't malignant or surgery was inappropriate, he'd simply close. Well, it turned out to be NSCLC and I was glad I hadn't done the needle biopsy, too. As you'll see on these boards, often they are inconclusive and that's just one more thing to go through before you're able to start doing something about the problem.

Good luck with this and do let us know about your appt. with the surgeon.

I'm sorry about the family problems. As Ned mentioned (I think it was Ned), if you have surgery, you won't be able to care for your mother for 6 weeks or more - no matter how little care she required. Maybe she could temporarily go into a nursing home and then, when you are over the surgery, etc. come back home. Let us know how this moves along, too.

Muriel

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Hi Muriel, Don M., Linda, Deb, Ned, Sandra and Lynn and Bruce!

Thank you all very much for your replies. Forgive that I am feeling overwhelmed. I've just found out today that I should get a PET scan (have to pay for it myself) but was told by someone (an older friend with lung cancer in the US) that a PET scan is the best for diagnosing lung cancer. Anyway, it looks like I could get one done next week, but will call the surgeon on Monday to see what he thinks. It costs a lot of money, about $2,400. From what I have been frantically reading on the Internet it seems like the right thing to do, but what do you all think? It means I would have to travel to a city about two hours away (which is okay), but will it be worth the expense? Anyway, I'll call the surgeon's office on Monday morning and see what they think. I want to do it and have the money to do it, but am just so in the dark here.

I'd like to thank all of you (hope I didn't forget anybody) for all your insights and advice, and am sure there will be many more posts in the future. Forgive me for being too tired to reply individually tonight.

Thanks so much, again. I'm so happy to have found you all.

Also, how do you put all the info in small letters after your posts? Do you use the signature section and keep updating it?

Cheers! Hope everyone has a great weekend!

Kelly

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Hi Kelly, my sister who has LC is named Kelly also, and is one of 2 of my siblings who were born in Hamilton! I still have lots of family there and visit often.

I believe the Canada health care system is not as big on PET scans as the US system is. I would say you are misinformed that it is the "best way to diagnose lung cancer". The best way to diagnose any cancer is by looking at the cells from the tumor under a microscope. In general, a PET scan will light up anything in the body that has a high metabolic rate. This can be due to cancer, but also due to inflammaiton or infection, so it is not a perfect test by any means. Talk with your health care team and find out what they are planning and what they think. They would have to have a gameplan for obtaining cells to determine what is going on. As Ned said, it could be that due to the locatoin of the mass they are concerned about going at it by needle biopsy or bronchoscopy (two very common ways that drs obtain cells from a lung mass to analyze them to determine the type of cancer). One other way of doing that is if there is a distant site that is more easily accessible. They will know that from the other tests they ordered. Now many prayers for you that there are no other sites and then your team will have to decide how to go about getting cells from the lung mass. June 9th feels very far away, does it not? I remember that agony all too well. I'm a scientist and I work in the field, but the fact that there was so much "hurry up and wait" was something I hadn't any real idea about until the early stages of my sister's disease. Oh that part was just horrible!!!

Also, you may want to pop over to http://cancergrace.com where Dr. West and Dr. Laskin answer any and all lung cancer questions. Dr. Laskin is a practicing oncologist in Canada and I bet she can help you decide if it is truly worth it to pay out of pocket for a PET.

Good luck and I have plenty of room for another Kelly in my prayers. :)

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Thanks for the welcome! I love your picture! Just a quick update for everybody. It seems people think I won't be able to care for my mother for about six weeks, so will have to start organizing help and I also have her on a waiting list for a retirement resident in the event that I can never care for her again. All very sad, but life goes on.

In terms of the family, I've called for a peace truce until I meet with the surgeon and finally and really know what is going on.

It's tough trying to make plans for my Mother when I am in the dark about my own health.

See, the problem is actually my eldest sister, who is a retired judge who is an absolute control freak. She wants to micromanage every aspect of my life now and then when I object she gets upset. She's a brilliant lawyer, has a very sharp mind, considered one of the best in Canada, but since she has retired she turns her mind and her formidable powers to solving problems - like what's happening to me and Mom!

She was driving me crazy so I told her not to phone me until after my appointment with the surgeon on June 9. I know she means well, but I just couldn't take it anymore.

Oh! About the PET scan, after everything posted here about it and further reading, I've decided to wait until my meeting with the surgeon to ask his advice, if he thinks it would be worthwhile in my case.

Also, I am taking my younger sister with me to the meeting because she can take great notes, and also, I am a journalist and can do that too, but would rather listen and take brief notes of key points. She'll be able to get the details.

And, finally, someone suggested the great idea of writing down questions to ask the surgeon. I actually can't think of any now, just because I have no idea what he's going to tell me. I'm sure I'll have plenty at the meeting, though.

You cannot believe how all of you have lifted my spirits! I feel so relieved to have found all of you. And you are all very much in my prayers. What a relief to know that I can turn to such a knowledgeable group for support.

Kelly

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Sounds like an excellent plan in all respects, Kelly. I imagine your burden feels a little bit lighter now.

When you and your note-taking sister meet with the surgeon, be sure you get the correct spelling of any unfamiliar words and ask for clarification if need be. Sometimes that one word, new to us but routine to the surgeon, can convey more than a whole paragraph of descriptive text. My surgeon, in the initial consultation, grabbed paper towels out of the wall holder and drew diagrams, spelling out thoracoscopy and thoracotomy. I still have those!

Aloha,

Ned

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Oh my Kelly - we have an ex judge in the family too!! I can relate to some of the, shall we say personality differences, with someone usually so in charge. :) Luckily mine has gladly passed over to me any and all issues medical.

You sound like you have a good gameplan in place. Your sister taking the notes is helpful, as you will want to be engaged in the conversation while she can do the writing. And I think you will have questions for them after this meeting. I don't hesitate to call or FAX with more questions that arise after appointments. :)

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Oh my! Then you have an idea of what I'm talking about having a judge want to rule your life! But, things seem to have calmed down now, thank goodness, and I am glad she is handling the home care aspect for Mom. Sort of.

I do have two questions.

After surgery (assuming I have it), will I be able to walk upstairs to my bedroom? Are stairs hard? We do have a hospital bed downstairs that Mom very rarely uses, so I could sleep there if necessary, but would obviously prefer my own bed.

Also, I write a couple of columns a week for the local newspaper. Any ideas how soon after surgery I would be able to sit at a computer and type?

Thanks!

Kelly

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