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Husband has Stage 3a Lung Cancer (non-small cell)

Started by cyncan

27 Jun 2013, 9:42 AM

Hello - My name is Cynthia. My husband was diagnosed with stage 3 non-small-cell lung cancer around this time last year. At the same time he was diagnosed with Type II diabetes which I understand is quite common with cancer diagnoses. He was told the cancer was inoperable due to the location of the tumor which at the time was around 2 cm. The diabetes was treated with pills which he took until around July 2012 when his sugar count leveled out and remained normal at least through December 2012 (he stopped checking in December). My husband, Rob, spent hours researching various treatments and learning as much as he could about cancer. In June 2012, the doctor told him his chance of survival was 15% with radiation alone and 20% with chemotherapy (not great odds in our opinion and with 100% chance of being very ill during the process). In July 2012 - the doctor no longer wanted to discuss radiation alone and was pushing for combined chemo-radiation for one month. The same doctor (radiation specialist) said without treatment my husband would have about 6 months remaining. Our daughter was getting married in August 2012, so we opted to wait at least until September before deciding. The doctors (one for radiation and one for chemo) never called us back ... never bothered to check on my husband. My husband decided to try alternative treatments instead (Budwig protocol, Essiac, major change in diet, etc.). My husband remained symptom-free until around March 2013 at which time he began to lose a fairly significant amount of weight (25 lbs in just over a month). He was also getting weak and tired. He returned to the family doctor in early May 2013 and was sent for new blood work and a new chest x-ray. Results: (1) the diabetes was out of control and most likely the cause of the weight loss and fatigue; and (2) the tumor had increased from 2 cm to 4 cm. He was re-referred to the cancer clinic and had the first appointment with the radiation doctor in June (yes, the same one who never bothered to call us back). He had another bone scan on June 19 and CT scan of chest, abdomen and brain on July 2. He had all of these last year as well. We go back to the cancer clinic in Kingston on July 17 to discuss next steps. The doctor seems to believe "curative" treatment will no longer be an option. Rob still does not have symptoms (lungs clear, no pain, very little coughing) so not sure what can be offered if "curative" treatment off the table.
I joined a caregiver support group that is based out of the U.S. for caregivers of those with lung cancer and I have noticed a common thread. All of their husbands are highly irritable, demanding and emotional. My husband has always been that way to an extent but increasingly so in the past year. I am wondering if there is a connection ... if that is a "symptom." It really goes beyond the anxiety around the diagnosis - it is completely irrational and seems to be out of his control and he does not even realize he is escalating to the extent he is. Just a curiosity in case anyone has info on this.
Sorry to be so long-winded but thought you should know where we are at this time. I joined this group because I have absolutely no idea what to expect and I think Canadian experiences will be more relevant to me (the U.S. healthcare system is so very different). I thought it might help to hear other stories ... learn about symptoms at the various stages as well as learn how various treatments seem to work. I also believe I can offer encouragement and a willing ear to others. Thank you for your time.

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Reply by moderator | modératrice

27 Jun 2013, 5:59 PM

Dear Cyncan,

Welcome to Virtual Hospice. I'm glad that you found us. Getting support online from others crossing all country borders, which is great. In fact we have several American friends sharing on this forum. But I can also appreciate that sometimes one needs advice or tips that are specific to the healthcare system that one is using.

I'm sure you will feel comfortable sharing here whatever your needs are at the moment and as time goes on. Let me introduce you to a few people in our online community to get you started.

Meet Cablestray who is caring for his wife. He recently joined the community too and started this thread:

Fatigue from Meds,Tests and Nausea - Caring for my Wife

I'm sure you'll also appreciate meeting Pollyanna and Sickness. They too are recent members and are sharing together about caring for their husbands on these 2 threads:

hi..i'm new here - husband has colon cancer

My husband is dying

In each of these threads, you'll meet other members like Marstin, Tian, NatR, Brayden, JennJilks and so many more. So, you see - your words will always be heard. We offer big ears, a virtual shoulder and compassion.

If you post a message on any of the threads above, anyone who has posted previously will receive a notification that there is a new message and then they'll respond.

Waiting for July 17 must be difficult. How are you managing? Are you able to talk to your husband about his irritability and how it affects you? Or does this just make things worse?

Colleen

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Reply by cyncan

27 Jun 2013, 7:46 PM

Thank you for your reply, Colleen. Yes, the waiting is the hardest part through all of this. For the most part my work keeps my mind occupied a great deal of the time. I worry about my husband, though, since he does not have a job outside the home. He does try to keep busy with the farm chores and researching online.

I have mentioned to Rob that he seems to be more edgy than usual these days. He does not see it but also reminds me that if he is more irritable it would be for a good reason considering his condition. It is hard for both of us to accept he is sick since he is still symptom-free at this time. At least there are no obvious symptoms.

Thank you for the links - I will read their posts and start to get involved in the discussions if I feel I can contribute or if I have questions I believe they may be able to answer.

Cynthia

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Reply by Brayden

30 Jun 2013, 12:32 AM

Dear Cyncan,
I just read your postings and I can feel your frustrations setting in. Unfortunately, you may be starting on a lengthy journey that will only get more diffucult. Thank you so much for posting here and allowing us to journey with you. My experience over the years is that if someone has even slight irritability in their character, it only gets worse as time goes on. Rob is so fortunate at this point to have the ability to go out and do the chores and love the horses etc. However back-up plans should be made soon as you have enough thinghs to worry about. You will also hear consistantly from us that you have to guard your time closely and not burn out. Neither one of you can afford that. July 17th will feel like eternity, but hopefully you will get a more clear picture at that time. Please keep coming back to us and I know others will give you full support. We all care about you. Pease
Brayden

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Reply by cyncan

21 Jul 2013, 2:44 PM

We got the test results and all organs are clear except the lung. We did get conflicting reports from the two doctors we saw on July 17. The radiology oncologist told us the cancer had spread to other parts of the lung (center - but do not recall the name he used) and at least one lymph node in the other lung. The chemo oncologist told us there was virtually no change since last year other than the tumour had doubled in size. Since we saw her after the radiology doctor, we asked about the lymph node on the other side. Her reply was that it was there last year and there is no certainty it is cancer. hmmmm... last year they classified Rob as stage 3a because there was no evidence of lymph nodes affected on the other side. This is very confusing to us and the chemo doctor just did not seem to understand that we had been given a very different picture just minutes before seeing her. It makes us question the quality of care in Kingston.
My husband wants to be transferred to Princess Margaret in Toronto but the logistics would just be too complicated for us. We live an hour from Kingston and I do have an office there. We are approximately 2 hours or more from Princess Margaret in Toronto and we only have one vehicle right now. Our daughter lives in Toronto but Rob refuses to stay away from home - even for one night. Thus - we are stuck with the Kingston team. oh well.
Both doctors in Kingston told us there is a 15% chance for "cure" with a combination treatment - radiation for 33 sessions and chemo for 5. The radiation oncologist gave Rob until Friday, July 19 to make a decision. That doctor is very "edgy" and has absolutely ZERO bedside manners or tact. He is very demanding concerning his recommendation for treatment - his way or the highway basically. At the last hour on Friday (it was 4:00 when he finally made the call) Rob called and left a voice message stating he will do the treatments. I assume we will hear from the doctor on Monday to discuss the schedule and get things started.
We both have mixed feelings at this point but feel it is currently our only option. I, for one, do not like living in limbo ... I want to move forward with treatment and then see where we are at the end rather than continually putting it off and not knowing if the cancer is growing or at a standstill.
Thank you for allowing me to vent here. Sometimes it helps to just express my feelings to someone who is not emotionally vested in us.

Cyn

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Reply by NatR

21 Jul 2013, 6:13 PM

Dear Cyn,

reading your note today, I can get a feeling for all the many frustrations you are dealing with, not to mention the unknowns, which way to go, which hospital, how to handle your sick husband and support him while dealing personally with his changing health, moods, fears, and your own.

i used to live near Kingston, now farther north, but I have heard great things about the cancer centre there - I think you are making the best choice given your location, work, one vehicle etc.

sad to hear the doctor lacks a bedside manner, or at very least common courtesy in communications. That makes it challenging on you the caregiver.

rest assured many will respond here - allowing you to vent, giving you some interactions that are without irritation, judgement etc.

i know what it feels like to deal with medical professionals that have an edge. Sometimes you have to wonder what is causing their attitude. Often it could be from pressures, burnout, etc. not making excuses but lately I try to look at others (now that I am older) and try to figure out what makes people tick!

the 15% odds sounds scary, and I can only imagine the stress you are under along with your husband

please keep writing when you need to vent, I only wish it was possible to give you a real hug and remind you to take care of yourself as you travel this hard part of your life jour net.

my thoughts to you and your husband,
sincerely,
NatR ;)

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Reply by cyncan

21 Jul 2013, 8:09 PM

Thank you, Nat! It helps to hear from someone who has heard good things about the Kington cancer centre because we are relatively new to the area (3 years). Of course, this whole cancer thing is new to us as well. Neither of us have had to deal with caring for family members with cancer or even close friends.

Since my husband has no symptoms as yet - the scariest part for us now is facing the probability that the treatments will make him sicker than the cancer has at this point. I do understand, of course, that the illness from the treatments will be temporary whereas once the symptoms begin with the cancer ... it will most definitely be permanent and final.

I am sure your chosen profession has provided you much experience in these situations ... probably does not prepare you any more, though. I am finding that cancer is as complex as we all are as individuals. You just have to do all you can and hope for the best.

warm hugs,
Cyn

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Reply by Brayden

22 Jul 2013, 1:41 AM

Dear Cyncan,
Please keep venting here because you do it with such a positive attitude. You must be the best support your husband could wish for. Too bad that you are having such a bad experience with your oncologist. It makes you wonder if the short timeline given to you was so that you would not have time to seek another opinion. Who knows. We are here to support you whatever route you take. My thoughts are with you,
Brayden

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Reply by moderator | modératrice

18 Aug 2013, 11:55 AM

Hi Cyncan,

It has been a while since we've heard from you on this thread. How are you doing?

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Reply by cyncan

18 Aug 2013, 12:20 PM

Rob started treatment on Wednesday, August 14. I had to be out of town (Ottawa - which is 3.5 hours from us and 2.5 hours from Kingston where the treatments take place) on Wednesday and Thursday so the Cancer Society provided a ride those days. Wednesday was radiation only and it went well. Rob really likes one of the associate doctors. He then started chemo on Thursday. My meeting ended early so I was able to drive to Kingston and pick him up on the way home. He was in great spirits although very nervous about all the warnings they gave him on staying away from animals (we live on a farm and also have 3 dogs and 4 cats in the house) and taking his temperature three times a day, etc. Friday I was able to drop him off at the hospital and work from my Kingston office until he was done around 2:00. He had a second round of chemo and the third day of radiation. Again - he seemed to feel great and we went out to eat and did some shopping in Kingston before heading home. Yesterday - he felt a little "out of sorts" but not really sick. He went to bed in the late afternoon and slept for about 3 hours. His temperature has stayed normal but his blood sugar has been quite high (they warned him about that) so he is making sure to take his Glyburide twice a day.
Next week he has radiation every day and will meet with the chemo doctor on Wednesday to see if he is able to have chemo on Thursday. I guess so far everything is going quite smoothly. Hopefully - it stays relatively the same. He is following the doctors' instructions to a T which I believe is helping tremendously. He is also keeping a very positive attitude ... especially when he read that most chemo drugs are plant-based now (including at least one of the two he is taking). Still poison - but at least he seems to feel better that it is from a natural source. Whatever makes him feel more at ease is important.
I will keep you posted as we move through this new phase.

Cyn

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