Lump suddenly appeared. - 1248243

brigitte
Posts:49

Mom discovered a pea sized lump on Dads lower right back the evening before and by the next day this had increased in size to approximately 3x2cm. Its solid...not squishy.

We called the oncologist and will be seeing him on Tuesday. Its difficult sitting stressing until Tuesday so I would just like to ask whether something cancerous can appear so suddenly. Is there a possibility that it could just be a benign cyst? Dad said for the first time since his cancer diagnosis he is really afraid since finding this lump.

What could increase in size so rapidly?

Brigitte

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Reply # - September 21, 2012, 07:59 PM

JimC
Posts: 2753

Hi Brigitte,

That's pretty fast for cancer to grow, but of course anything is possible. As far as lumps in the skin as described by another GRACE member, Dr. West stated:

"I was presuming these are established as dermal (skin-based) metastases. A biopsy would prove that, but if they're new, hard, and tender in the setting of progressing cancer, it's a safe assumption that they're metastases." - http://cancergrace.org/forums/index.php?topic=10852.msg88249#msg88249

In the setting of metastatic cancer, in which there are already adrenal and spinal metastases, such a lump would probably only be a concern if it is causing symptoms or endangering a vital body structure, in which case it might be a target for radiation. It's certainly an issue to raise with his oncologist.

I hope that it is nothing significant.

JimC
Forum moderator

Reply # - September 21, 2012, 10:17 PM

Dr West
Posts: 4735

Jim identified a very relevant quote, and I don't have much to add. Growing overnight isn't what I'd expect to see, but I don't think that you'd expect to see that with a cyst or other benign finding either. My fear would be that a new and growing firm skin nodule in someone with a known cancer probably represents an enlarging lymph node or metastatic spread under the skin. I hope you'll tell us more as you get more information. Good luck.

-Dr. West

Reply # - September 22, 2012, 02:07 AM

brigitte
Posts: 49

Thank you Jim and Dr W. Its so scary and my Dad just recently said to me, that at night when he goes to sleep, he thinks "What is going to come tomorrow" as he says every day there seems to be another problem.

Dr West if I may ask.....Cancer diagnosed in April, Chemo 4 cycles and then a scan......on the scan the supraclavicular lymph nodes were no longer enlarged and mediastinum lymph nodes had decreased in size, but the possible primary in lung had increased in size.

Also new adrenal and kidney metastasis noted, then spinal metastasis and now this lump. If this in in fact another metastasis and all of this since the day of his 1st chemo which was just under 4 months ago is such a fast progression unusual. Does this mean things are not looking good?

Oncologist is waiting till about the 18th October for another scan. In this period only 10 rounds of radiotherapy. If there are all these new things appearing, should some sort of treatment not be started?

p.s. Asked my Mom about it again and she said maybe it was the position Dad was in when she saw the lump when it looked small. When he showed it to us the following day he was bending forward, so this could be the reason why it looked larger.

I am so scared.

Reply # - September 22, 2012, 07:50 AM

catdander
Posts:

Hi Brigitte, I'm so sorry your dad isn't responding well and I understand the fear you and the rest of your family must be going through. I can't imagine what it must be like for your dad.

Has he tried another chemo or tarceva or been tested for ALK? All should be not far from standard practice for a progressing adeno nsclc. If he has and egfr mutation or alk rearrangement the right drug could really change this course.

Radiation is given for control of problems such as pain or obstruction or compression. Has his compression fracture been addressed? I certainly hope he is getting adequate pain relief at least.

I hope your dad finds relief soon.
Janine

Just a note, if your signature has changed would you please update it so the doctors have the latest on your dad's treatment? Thanks...

Reply # - September 22, 2012, 08:05 AM

catdander
Posts:

Your dad most certainly has options past first line treatment. If his onc hasn't made in suggestions toward that perhaps and 2nd opinion is appropriate. There are more reasons for one than I understood until Dr. Weiss wrote this very good piece.

http://cancergrace.org/cancer-101/2011/11/13/an-insider’s-guide-to-the-second-opinion/

These are 2 blog/posts on the subject of 2nd line therapy. I hope it helps.

http://cancergrace.org/lung/tag/second-line-therapy/

http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o…

Reply # - September 22, 2012, 12:11 PM

brigitte
Posts: 49

Janine.....I had read Dr Weiss s post a while back. I asked the oncologist whether tests were done for mutations and he said the most likely ones were tested for and he mentioned that EGFR was negative, but he did say that he might still consider an oral tablet like Tarceva even though he tested negative. When I do not know. I think only after 18 th October scan will he decide where to go from here. Not sure what other mutations were tested for.

We see him on Tuesday 25th Sept for the lump on his back so will have to see what he says. I am just so fearful of waiting so long if the lump is in actual fact a metastasis, then the spread is happening so fast, if treatment is delayed am worried about how worse it could get.

After the 3 rd radiation treatment, Dad started having a bit less pain.....said it was better than prior to radiation. So at least he is not in as much pain as before. He also said yesterday that for the first time the Tramacert he was given actually worked for the pain.

Its a long weekend here so Dad will only be going for his 5th treatment next week Tuesday. He has also been given different meds to help with consitpation but as before this is not helping either. He says he is going to take pico-prep again today, but am also worried about this and he cannot keep taking this once a week for a bowel movement.

This has been going on for 5 weeks now. No bowel movement without pico prep. No other laxatives are working. The oncologist changes it when we mention the problem, but what do we do when this still does not work? Should we call him or wait till we see him?

Brigitte

Reply # - September 22, 2012, 12:50 PM

catdander
Posts:

I'm sorry but we can't say what you should do. Except to say call the oncs office. There should always be someone there to answer questions like that. Depending on treatment my husband's GI has maintained a constant combat with the rest of his body. If he's not taking senna plus for constipation he's looking toword imodium for diarrhea. And when lucky he's somewhere in between.

Reply # - September 22, 2012, 02:38 PM

Dr West
Posts: 4735

It does sound like his progression has been on the fast side, and I do understand your concern about him being off of therapy and just seemingly waiting for more progression. In patients who are demonstrating progression, I don't tend to favor a break of more than a few weeks unless the patient wants/needs it, since that progression can mount over the course of more than a couple of weeks.

-Dr. West

Reply # - September 27, 2012, 01:21 PM

brigitte
Posts: 49

Update on Dad.

Saw oncologist on Tuesday. Had a needle biopsy on the lump on back. Dad started on morphine and even though he says he is still having pain, he started getting miserable and swearing when we tried to find out how he is, so we have not been asking again, but his condition seems so much worse. He is so very weak and barely eating. Popped in to oncologist a day later to ask about the morphine and he had a few minutes to chat to me. I mentioned that my Mom and I are concerned about the fast spread and the oncologist agreed. He said that although the biopsy is not back yet, he suspects the lump is a metastasis and will do a scan a week after radiotherapy ends to see what is happening with the other mets.

He wanted to admit Dad to hospital, but Dad is refusing.

For the past two days, Dad sounds like he has laryngitis. The oncologist said it could be from the radiation, but the radiotherapist said that treatment is to the lung and spine and is nowhere near the neck, but to speak to the oncologist. His voice is so low that one has to strain to hear him.

Dr West have you come across this before in lung cancer patients?

Reply # - October 3, 2012, 08:28 AM

brigitte
Posts: 49

Biopsy results came back negative for cancer cells. My Dads oncologist is away so spoke to one of the other doctors telephonically and she says that even though it came back negative, she believes it is a metastasis. She said the needle biospy could have hit an area where there is a fat pocket or something else (cannot remember her exact words) so the results are not necessarily negative.

The lump has grown larger and Dad is not doing well at all.

Doctors in a case such as this, what else could be done to determine what this lump is? What would be the next step when the biopsy comes back negative, but it is believed to be a metastasis?

He will be having radiotherapy until Friday as the machine was broken today. Most probably a week or so from now he will be having a scan to see what has been happening to the other metastasis.

Brigitte

Reply # - October 3, 2012, 12:23 PM

catdander
Posts:

Brigitte,
I'm sorry your dad isn't doing any better. Maybe the radiation will start working soon, the timing on that is quite varied.

My husband has never had a positive core needle biopsy, out of 3, in 2 different tumors. His diagnostic biopsy was gotten from open surgery after 2 core needle and one VATS surgery. The biopsy they did during maintanence tarceva was in the other lung in a new tumor. It caused a lung callapse, 3 days in the hospital, and was non diagnostic (As opposed to negative). After that we, the doctors, D, and I decided it didn't matter because it was so probably cancer. He didn't try another biopsy, he was already diagnosed stage 4 and wouldn't change treatment. I think it depends on how it changes treatment whether or not how eager you want to get about obtaining cancer cells from the tumor.

What does his doctor say about it?
Janine

Reply # - October 3, 2012, 01:50 PM

brigitte
Posts: 49

Hi Janine,

I think my Dads was a fine needle aspiration biopsy. Now that you put it that way....." I think it depends on how it changes treatment whether or not how eager you want to get about obtaining cancer cells from the tumor."

I don't really know why I want to know what exactly it is, most probably because my Dad said out of everything so far the lump on his back really scares him as its the size of a ping pong ball.

I think I sort of understand how it can spread to the internal organs, bone or lymph nodes, but its just shocking to see this large lump on the back, when I think of lung cancer as more of an internal problem.

Of course its scary having things appear and not really knowing what it is, so a negative for cancer would give us some relief in the middle of all the bad news.

His doctor will only return next week, so we will see him after his return and then will find out what he thinks.

Dad has not had a bowel movement in over 2 weeks, is barely eating, very weak, has extreme fatigue, very confused (maybe from the morphine) so this is quite distressing. Also not knowing if the fatigue, not eating, will get better is terribly stressful......He has gone from a seemingly healthy looking, fit 70 yr old ( but looked 60 and had the strength and body of a 60yr old) to an old man of more like 80 in the 4 months since the start of chemo.

I do not know what to do anymore and it seems as all we are doing is getting treatment, but nothing is getting better.....everything is getting worse and I am no clearer on how my Dad really is. It seems to me that most other stage iv people go through quite a lot of treatment, but are coping and even if there is progression, it doesn't seem so rapid as like my Dads.

Reply # - October 3, 2012, 08:10 PM

Dr West
Posts: 4735

Brigitte,

I'm sorry for what your father is going through. In truth, there is a huge amount of variability in how individual stage IV patients do, and most of that has to do with the biology of their cancer: sometimes they are very responsive to treatments, and patients do very, very well for a long time, but other times the cancer is aggressive and resistant to all of our good treatments.

You're more likely to hear about the people doing well because they are online for months and years considering the options, while the patients who are in a tailspin may not be well enough to spend much time online and are more frantically focusing on the acute needs of the day instead. But in the cancer clinic, we see everything, including the very humbling cases like your father's, where it's very debatable whether treatment (at least more and more ongoing treatment) is doing anything other than causing treatment-related side effects on top of the cancer-related symptoms.

A fine needle aspirate may just not get enough tissue to provide a diagnosis, so it's not rare to get a "non-diagnostic biopsy" or a "false negative". In this case, getting a bigger biopsy, such as a core biopsy (bigger needle) or even an incision or excision biopsy (small surgery to remove a piece or a whole lump or lymph node) may provide a much better chance of giving the answer. In all cases, however, it's fair to step back and ask whether there is a clear need for the biopsy. Specifically, will the results change management? Is the result already so clearly presumable that it isn't needed?

-Dr. West

Reply # - October 4, 2012, 12:35 AM

brigitte
Posts: 49

Dr West,

Your reply has made things clearer for me. I was under the impression than most were doing quite well and at least buying some extra time and coping well.

Your explanation puts things in perspective for me. Not knowing that there are others who are also not doing well, but as you said, these people do not have the time to be online so I was in the dark about this and thinking....."Why is my Dad doing so badly"

To be honest the way things are going I regret my Dad ever having chemo. I know without it might have progressed even faster and there is no way of knowing this as he could have been one of the lucky ones who respond well. Its easy to say this with hindsight, but now the problem is what to do from now on.

When his oncologist comes back and after the scan, he will most probably tell us our options.

I just wish my Dad could have some "normal" time. :-(

Thank you Dr West, I needed to know the above and appreciate your candidness.

Reply # - October 4, 2012, 11:45 AM

catdander
Posts:

I still worry about the fact your dad hasn't had a bowel movement in 2 weeks. I realize there is possibly a good reason that I don't know about.

Reply # - October 4, 2012, 12:49 PM

brigitte
Posts: 49

Janine,

Its actually more than 2 weeks now. Saw another doctor today. Dad had x rays taken of his bowel and it is distended and both bowel and rectum impacted with faeces.

After Dads last radiation treatment tomorrow he is going to be admitted for a few days to get his bowel cleaned out and also pain medications adjusted. Hopefully with IV fluids and bowel sorted out he may feel a bit better.

Brigitte

Reply # - October 4, 2012, 01:20 PM

catdander
Posts:

Thank goodness. From what I understand that could be a big portion of his discomfort.

I've already asked a doctor to comment on this so expect some good input on going forward from here.

Reply # - October 5, 2012, 06:54 AM

Dr West
Posts: 4735

I don't think an oncologist will have much to add. Severe constipation may be caused by minimal oral intake, opioids, bowel obstruction, or many other things, and if very severe, it needs to be worked up by a general medicine doctor or gastroenterologist. That workup is really not something that a lung cancer specialist has any particular insight or expertise about.

-Dr. West

Reply # - October 5, 2012, 10:45 PM

Dr Harman
Posts: 12

Brigitte,

Constipation can cause a lot of problems, and when it's been as long as two weeks, it usually takes more than just a laxative or two, unfortunately. Constipation can make people feel nauseous, feel delirious, cause pain and certainly contribute to how poorly he is feeling. Because of the enlarging lump you have mentioned, his constipation is unlikely the only reason for his decline, but I hope admitting him will get him feeling better. There are multiple strategies to help with his constipation; see this old post: http://cancergrace.org/cancer-treatments/2009/06/02/cancer-related-cons…

-Dr. Harman

Reply # - October 6, 2012, 12:26 AM

brigitte
Posts: 49

Thanks Dr Harman,

A very informative article. Dad has been on senna and dulcolax for weeks. It never helped. He ended up having to take Picoprep (its the solution you drink to clear the bowel before a colonoscopy) However even this did not work in the past 3 weeks.

With his hospitilisation and treatment for the constipation etc. I hope he can recover somewhat and maybe just get a bit of a boost. The doctor did mention after clearing everything out that we will start from square one again and hopefully get his bowel moving.

I am so relieved that he is in hospital for a few days.

Hoping for the best.

Thanks to all the doctors here for their input. It is much appreciated. :-)

Brigitte

Reply # - October 9, 2012, 08:54 AM

brigitte
Posts: 49

Dad was admitted on Friday 5th October. Had an enema and stomach worked. They were keeping him in for a few days to make sure he does not have the same problem and for pain control.

His stomach still has not worked again since the enema. He had ultrasound after drinking barium and there is no blockage etc. He has been given fresubin and hydration and his skin colour looked much better today.

Had a scan yesterday and new throat metastasis....neck also. Adrenal gland metastasis much larger. Possibly starting tarceva in 2 weeks time. I don't want Dad to suffer through treatments if its not going to help but just make him feel worse. Oncologist said we can try and see. I asked him if tarceva did not work what would happen. He said no third line chemo. I asked if that was the case how long would Dad have. He said maybe months.

I am devastated. This is what I did not want to happen.....Dad having treatments which made him really ill....and then he dies without having any decent quality of life and time to enjoy whatever time he had left.

Was I wrong to encourage Dad to just finish his 4 rounds of chemo when he was so ill after the first, then second and third chemo?

Would he have possibly have stayed well for longer if he did not have the chemo? Before it began, he was ok......had lost weight, but stabilised at goal weight and although he did not have much appetite, he was still eating albeit much much less.

He was wallking many kilometers a few times a week and enjoyed going out. Now he is housebound and cannot do what he wants.

Is there any way he can recover enough to just have some quality of life .....even for a month or two?

I know its a stupid question and common sense tells me there is no hope of this, but I cannot bear to think that it went from good to bad so quickly and I encouraged him to fight and try treatments that seemed to do just as much harm as the cancer would have.

Dr W I do understand from your post that for him it was just not meant to b

Reply # - October 9, 2012, 09:54 AM

catdander
Posts:

Poor dear Brigitte. The one thing you mustn't do is blame yourself for an outcome from your dad's cancer. It's a horrible disease that deserves every bit of its reputation. You can not guess what may have happened if he'd done treatment another way. There is all but no one who would have done it differently. It's the damn cancer.
I'm so sorry his cancer isn't leaving your dad better time with his home and family.
Don't blame! anyone for what this disease is doing.

I hope tomorrow is a better day for your dad.

Reply # - October 9, 2012, 12:28 PM

brigitte
Posts: 49

Thank you Janine.....In my heart I know that......in my head its all the what ifs. Was just a tough day and I hate feeling so helpless and powerless to do something.

I think if I had not read Dr Wests earlier post about some people just not doing as well, it would have been even more of a shock than it was. Its one thing sort of feeling that things are not going so well, but having it confirmed by his oncologist just made it so more real.

Then Dads reaction........and all I have ever wanted since the beginning of this terrible journey was that he have some quality time........the really fast progression is just such a shock.

I must thank all the doctors and moderators (yourself included) on this forum for making me feel a little less alone and helpless dealing with this.

Brigitte

p.s. Sorry for the earlier rant. I guess I just needed to let it out somewhere. Sorry.

Reply # - October 9, 2012, 01:45 PM

double trouble
Posts: 573

Dear Brigitte,

I am so sorry hearing your story. It sounds so much like when my mother was battling lung cancer. I hope the time in hospital gives him some relief. My mother had a similar met on her back, though I didn't figure out that that's what it was until I got cancer and started learning about it. Looking back, I wish I had rolled her up onto her side during her last days, because I know the "lump" was causing her pain, and even though she was on morphine, I think about how I just didn't remember it was there on her back, and get her off of it. I just feel so guilty about that. So, I'm just saying that if he gets to a point where he's not communicating well, maybe you can remember my story and be mindful that he probably is more comfortable when not lying directly on the "lump."

As for constipation, once he is back home there is a tea called "Smooth Move" by Traditional Medicinals that is mostly senna, and tastes better (to me) sweetened a little, but it really works well for me. I take stool softeners every day, but if things look like they're slowing down I have a cup of the tea. I don't know if it will work as well for your Dad, or if he will like the taste, but it's something to try. It's not with the regular tea in my store, it's with the health foods.

I second what Janine said, don't blame yourself for anything cancer does. It is a terrible disease and every patient is different, and there is no way to know ahead of time who will respond and who won't. You are doing a wonderful job of educating yourself and you are there every minute for your Dad, even when he gets a little grumpy, and that is worth more than any therapy in the world. Don't forget that he is not the only one who is negatively impacted by this disease, you need support too, so go to your friends and family and take time for yourself too, as you care for him. You're a good daughter.

Debra

Reply # - October 9, 2012, 06:21 PM

Dr West
Posts: 4735

I don't know what's possible, but you need to focus on moving forward. There is no point in beating yourself up about past decisions.

At this point, make managing his symptoms and optimizing his quality of life a high priority, and he'll do as well as he possibly can.

Good luck. We'll be happy to try to help with answering questions you may have.

-Dr. West

Reply # - October 10, 2012, 08:43 AM

brigitte
Posts: 49

Debra thanks for your input. Will definitely keep your suggestions in mind in the time ahead.

Thank you Dr West......I am sure I might have additional questions in the day, weeks or months ahead. Till then I will try and focus on what you suggested I now need to do. I know its no use moping about......it wont help him.

Brigitte

Reply # - October 10, 2012, 09:10 AM

luke
Posts: 101

Brigette, I am truly sorry to hear what your dad is going through. My thoughts are with you and your family. I wish there was advice I could give to make things better.

Reply # - October 10, 2012, 01:41 PM

laya d.
Posts: 714

brigitte:

I'm so sorry to hear of all that your Dad and the rest of you are going through and have been through. This disease is just maddening. And, please don't fill your mind with regret over what should or should not have been done in the past. I have come to learn that there are no absolutes with this disease and the treatment options that are out there. You were smart enough to get yourself (and your Dad) as much information as possible (by reading and by asking) before the treatment options were made. You and your family made the best decisions you could given the information you were provided and the outcomes you were hoping for at thie time. It's a mistake to now look back and regret the decisions - - given that hindsight is 20/20. How would you have known if treatment was going to be helpful unless you tried?

You are a fabulous daughter and a great champion for your Dad. I hope that Tarceva helps him greatly and stabilizes his disease for a long time. In the meantime, I wish him comfort and "moving bowels". . .

xoxo,
Laya

Reply # - October 16, 2012, 09:49 AM

brigitte
Posts: 49

I am not sure if I must start a new thread of if I can continue with my questions as they come up in this one.

Dad is still in hospital. Still has consipation. A few days ago mass was pushing trachea to the left so he was vomiting and aspirating for 2 days. Had a speech therapist come in to give him tips how to eat. This helped, but for the past 2 days not eating again. Sleeping all the time....wakes for a minute or so at a time and goes back to sleep.

Oncologist told us today that Dad has elevated calcium levels and this could be the reason for him sleeping so much and being out of it.

Read up on hypercalcemia when I returned home. Dad was given an infusion of some meds for his bones today. Oncologist said that possibily in 2-3 days it should kick in and Dad might be more alert.

My question is.......I would like to know what the elevated calcium levels mean in the long run. Is it a very bad sign and could it impact on his prognosis?

Also he wont eat and I asked the oncologist about this and he said its ok not to try and force him as it will just cause more stress for him.

If he does not eat much anymore ....say a little soup only daily, would he deteriorate much faster and how long could a human survive when they do not eat?

The oncologist said they would not start tarceva unless Dad is a bit stronger. I asked him what Dads prognosis could be if the Tarceva did not work. He said maybe months.

This is worrying me.

Brigitte

Reply # - October 16, 2012, 01:02 PM

marisa93
Posts: 215

Brigitte,

I am very sorry to hear of your dad's condition. I hope your dad's infusion helps some and he can be more comfortable and alert. Sending best wishes to you and your family as I know what a tough time it must be.

Lisa

Reply # - October 16, 2012, 03:14 PM

catdander
Posts:

Brigette, I know this is a very scary time for you. I hope you can come to some understanding of how your dad's disease might progress. His doc did say to give the meds a few days. Please let us know how he does. A person can live without food for quite a long while, weeks (?) I thinks if they are hydrated and especially if he is taking high protein, easily digestible soup.

Dr. West stated in another thread that zometa can help with lowering calcium levels so that's likely the bone med infusions your dad has gotten. He says, "Lowering elevated serum calcium levels is pretty important, and zometa is among the more effective ways of doing this, along with potentially fluids and sometimes addition of a diuretic like lasix (furosemide), as well as the calcitonin Dr. Ramchandran mentioned. High serum calcium levels can lead to several symptoms and other metabolic issues." http://cancergrace.org/forums/index.php?topic=8864.0

And here, "Both the high calcium level and the pneumonia are potentially quite reversible problems, so unless he’s on a morphine drip and really fading or unresponsive now, I do think it’s possible for things to turn around. It’s also important to get input from the docs actually treating him, since they have far more information about the situation. If they are saying things can improve, that would be reassuring. If they say that his condition is beyond the point of no return, I would suspect that’s an appropriate realistic assessment based on what they’re seeing but we can’t." http://cancergrace.org/lung/topic/stage-4-lung-cancer-high-calcium-and-…

Reply # - October 16, 2012, 07:52 PM

brigitte
Posts: 49

thanks Lisa.

Janine as always thanks for your input. I guess sometimes google isn't your friend. Reading about worst case scenario in ppl with elevated calcium levels just made me over react and think the worst. I realise now that the sleepiness and not being very alert is more than likely due to hypercalcemia but seeing him like this all of a sudden made me so scared he was leaving us.......

I did tell the oncologist that his condition scared me as I sat with him 3 days ago thinking he was dying. His breathing was all weird and he would only wake for seconds at a time.

Hopefully the infusion lowers blood calcium levels and as Dr West said which is reassuring to hear is that elevated calcium levels are reversible.

I have asked the oncologist whether "anything" was going to happen soon as he looked so bad. He said in oncology anything is possible, but usually you would notice the decline over a period of time. I asked him please to let me know if my father reaches a point where things seems to be heading in that direciton and he assured me he will.

I just feel I need to know exactly what is happening medically with my Dad but of course I cannot take up the oncologists time wanting more and more details. He does explain and let us know how Dad is. I just feel unstable not having more facts. I feel like things are going on I do not understand and this worries me.

My expectations are starting to get lower and lower day by day.

Anyhow thats my problem. I will definitely keep you all updated on Dad. I am still hoping he has some good time before anything bad happens. I feel a little more reassured that the bone meds infusion will help.

Thank you again for responding. Sometimes I feel that its just the cancer forums and members and docs that keep me on a slightly more even keel......I am just on autopilot daily and constantly exhausted even though I sleep 8 hours a night usually. Tonight though woke up at 4 am and could not sleep.

Brigitte

Reply # - October 16, 2012, 09:03 PM

Dr West
Posts: 4735

Brigitte,

I am reluctant to intervene here, but I'm concerned because the whole picture sounds to me like your father is very ill, based on the whole combination of issues happening here. There is no substitute for actually seeing a patient directly, but based on what you're describing, I am concerned that his prognosis sounds like it could be very limited, and that an estimate of months might really be an overly optimistic assessment. I would definitely say that these issues are possibly reversible, but when you're trying to prepare for the various possibilities, I feel like it wouldn't be honest for me to ignore the warning signs I'm hearing that the whole picture sounds like one in which many patients don't turn around significantly. We often say "hope for the best, but prepare for the worst" and that's the way I'd view his situation. I wouldn't want to say that there's no hope for a reversal of his many issues, but I fear it would be disingenuous just to offer platitudes that everything will turn around.

As I say, I don't have the details, so please take my thoughts with some skepticism, as I would prefer to be wrong and be misinterpreting how challenging things are there.

-Dr. West

Reply # - October 17, 2012, 12:45 AM

brigitte
Posts: 49

Dr West I really appreciate you sharing your thoughts. Seeing his decline, what you are saying is exactly what I have been thinking myself, but I think his oncologist does not want to say too much. I have told him that I would like to know if things are bad. My shock on visiting daily and seeing the change I think you can imagine. I would rather be told the worst and then hope that things turn around. If not I think I wont be prepared for what might happen and this would be more difficult for me to cope with. Not to mention helping my mother through this.

It just seems to be going downhill so fast.

Obviously I still hope that things can turn around and hope for small miracles.

We haven't even had a chance to talk or catch out breath. Its been from treatment to treatment to this.

As usual I appreciate your candour.

Brigitte

Reply # - October 23, 2012, 04:37 PM

brigitte
Posts: 49

24 October 1.36 am Cape Town South Africa

Dr West and everyone else.......too exhausted too think straight right now and will return at a later stage to express my thanks again but thought it only right to let everyone know.

My Dad passed away at 6.20pm last night....the 23rd October. We are devastated.

Will return when I can to post a proper message.

Dr West, you were so very right :-(

Reply # - October 23, 2012, 05:42 PM

marisa93
Posts: 215

brigette,

I am very sorry to hear of your dad's passing. I will keep your family in my thoughts. We are here whenever needed. Take care of yourself.

Lisa

Reply # - October 23, 2012, 05:43 PM

double trouble
Posts: 573

Brigitte, I'm so sorry. Please know that the sadness you feel now will diminish with time, and it will become easier to revisit the fond memories I know you hold in your heart. Again, I am so very sorry.
Debra

Reply # - October 23, 2012, 06:08 PM

JimC
Posts: 2753

Brigitte,

I'm sorry to hear of your dad's passing. Your concern for him was so evident from your posts, as you sought to understand this awful disease. You will be in my thoughts for comfort and peace.

JimC
Forum moderator

Reply # - October 23, 2012, 08:03 PM

catdander
Posts:

Brigette, I'm so very sorry you've lost your dad. I can imagine the grief you and your family are experiencing. You are in my heart.

Reply # - October 25, 2012, 10:04 AM

laya d.
Posts: 714

I'm so very sorry, brigitte. . .This is plain awful. I wish you and the rest of your Dad's loved ones peace.

With an incredibly heavy heart,
Laya

Reply # - October 25, 2012, 02:20 PM

mikem
Posts: 69

Brigitte, I am so sorry to hear of his passing. I know you had hoped for more time. I am very sorry you had to go through this. --mikem

Reply # - October 25, 2012, 11:57 PM

brigitte
Posts: 49

Thank you everyone. I cannot get over what happened.

I have a few questions I would like to ask Dr West, but will do so another day when I can manage to sit focus as there are things I just cannot understand.
His wish was to be cremated as soon as possible. He hated the thought of being in a cold place, so we managed to get it scheduled for today at 3pm

Grandpa

Grandpa was diagnosed with cancer
it made us really sad

We knew he was unwell
but didn't think it would suddenly get this bad

God saw you getting tired and a cure was not to be
So He put His arms around you and whispered "come to me"

With tearful eyes we watched you and saw you pass away
Although we loved you dearly we could not make you stay

A golden heart stopped beating, hardworking hands at rest. Grandpa we love you, you were the very best

We love you

Reply # - November 15, 2012, 12:09 AM

brigitte
Posts: 49

Thanks to the doctors and members for your support. I still am shocked and not dealing well with my Dads passing and still end up on cancer forums reading everyones posts. I don't know why, maybe still looking for answers.

I have a few questions but will just add a bit more info on Dads last days.

We spent most of the 20th October with Dad. We had just returned home when the hospital called and said that Dad did not seem to be doing well and that we should return to the hospital.

We did so and his oncologist called and came to see him late that night....he was not on duty that evening and the other oncologist had called him to say Dad did not look very good.

Prior to hospitilisation Dad was on mist morphine 7.5ml every 4 hours. Once hospitilised he was given a morphine patch and then mist morphine 5ml every 4 hours. When his oncologist arrived I discussed my Dads situation with him and asked whether his morphine could be reduced as my Dad never took meds and I felt that the morphine contributed to my Dad being so confused and out of it the previous week. Also lying with his mouth open and breathing heavily and snoring. I felt that the dosage was maybe a bit high.

The oncologist said he would check his calcium levels the following day and if good would give him a drug that is used on people who have overdosed on morphine. The only problem with this is that he might have severe pain but morphine would not help, but that they could give him something else if needed.

He also agreed to stop oral morphine immediately and see how he was in the morning.

We arrived early the following morning and Dad was much more alert.....seemed better and was not sleeping and breathing so weirdly anymore.

He was having diahrea and by this time he was in diapers, but kept on wanting to go to the loo and not use the diapers. He was compos mentis and knew exactly what he wanted. He spoke to my Mom and I and the 2 children and seemed much more alert and himself. I gave him water and

Reply # - November 15, 2012, 12:20 AM

brigitte
Posts: 49

sorry...will continue here.
fresubin and he asked why I keep on giving him this "crap" to drink. He asked for sprite which I bought and gave him mouthfuls with a syringe. He seemed to be doing better. When the children left he did not want them to go and when we left late that evening he became upset and wanted us to stay but eventually agreed we could come back in the morning and I promised to arrange for him to come home. The following morning since I arrived he carried on and on about going home and wanted the sides of the bed dropped so he could get up and get dressed to leave. Eventually got everything organised and he returned home late afternoon.Had diahrea all night....was caught walking to toilet himself and would not stay in bed.
I came back the morning and spoke with him. He still had diahrea but was talking and making sense. He asked for orange juice but was told to avoid that because of diahrea. He spoke to me.....and held my hand and stroked my hair and asked me to forgive him.....he was a very strict Dad. He also had not updated his will which he wanted to do and asked about this. I told him he should wait until he is stronger and we could do this at that time. He seemed very worried about this. I told him I needed to pick up meds for him but would return soon. He said it was ok and I left to do his shopping.
He passed away in that hour or so I was away. I arrived home 5 minutes too late.
My questions still are .....
1. How could he die so suddenly and yet have been alert and making sense a hour or so before?
2. Could he have felt something was wrong and that is why he was so worried about his will?
3. Does this often happen that even the oncologists are taken by suprise?
4. The oncologist said it must have been something unexpected like a pulmonary embolism......could it have been avoided if he stayed in hospital?
5. Dr West felt on16th without even seeing my Dad that things were not looking good. Why did Dads oncologist not see this and warn me?

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