I have a question about what to expect as this cancer progresses.

I have been a "lurker" on this forum for some time. Here is a history -
My sister (to be 40 this January) was diagnosed with SCC on her tongue late Jan. 2004. She had partial tongue glossectomy with flap reconstruction, and right neck disection surgery in Feb 2004, followed by radiation and chemo starting early April. She completed all the radiation and chemo. Mid August, what was originally thought to be an abcess in her neck, was biopsied and cultivated and the reports showed a reocurrence. Sept 1, she had the neck mass removed and interoperative radiation. She had a consultation visit with Sloan Kettering after this last surgery where they told her they agreed with all advice and procedures she had been given thus far. She began sessions of chemo (taxotear) 3 weeks on, one off for 12 weeks. After completing 7 weeks, again her cancer has reocurred, this time in the neck again, and has broken through her skin, on the underside of her chin. Her Dr's have told her, that there are no further options, and hospice/palliative care should be considered.

My question is for caregivers that have been through this. What should we expect? How does this type of cancer progress from this point? In what kind of time frame? We are in the process of arranging a home visit from the Hospice center.

As I said, I've been a "lurker" on this forum for some time now, and have found the forum very valuable in the past. I haven't seen this question addressed before. If it's not appropriate please send me a private message.

Thank you.

Mike, I sent you a private message.

Christine

This is an appropriate topic, though one most of us do not wish to think about. Christine seems to have a good idea, and that is to discuss with you her personal experience with this situation through emails. I know there are others here who will likely also email you directly with their experiences. We never censor anything that is put on the board, but my guidance here is that there are many people currently in treatment who are having a great deal of anxiety about their situation. We should think about them as we ask and answer some of these delicate questions. They need to be addressed, but I believe Christine has taken the right approach. This allows those that need or want to know details which may be disturbing to some, to still be able to get the information from those willing to share it.

I urge people that have questions, no matter how delicate or possibly disturbing, to ask them. You will certainly have people respond to you privately, as this is a group that has people with a broad range of experiences. In spite of the pain some here have suffered, they are a giving and caring group that will email you the answers that you need.

I agree with Brian and Christine. However, I would like to get some information myself.

I have researched this subject to the highest degree but information seems to fall short when it comes to recurrance. I would like to know things like symtoms, disease progression, treatment options, etc.

While the small amount of data that I can find is a little disturbing in terms of survival etc, I would like to know just the same. Anyone that has such information should post links etc or e-mail me.

Thanks,
Robert

Mike-
Although I don't have the answers for you my heart and prayers go out to you, your sister who is fighting for her life and your families. This disease sucks, that's for sure. God give us the strength, faith and love to deal with it.

All of us dealing with cancer are walking a fence with one foot on the "what if it doesn't go away" side and the other foot in the "don't need to know cause I'm cured" side. But we still wonder in our dark moments and we should provide our caregivers with answers somewhere. I think having an area on this site that answers your questions would be a good idea. We wouldn't have to go there if we weren't ready to deal with the reality of reocurrance. But knowing that our caregivers can find answers in the dark hours when they can't sleep (why does it always hit at 3 am?) it sure would be meeting a need.
God's peace to you Mike during this hard time. She is a lucky person to have a caring brother like you - Kris

Hi
Not sure about this being on the site, I'm a carer for my husband who's blind, got cardiac problems and currently is in remmision from advanced prostate cancer, Yes there is always at the back of my mind what will happen, either to him or to me in the future, KNOWING that no two cases are ever the same. WOULD specific details help me prepare, I'm really not sure we are ready for this other than by private message..
Sunshine.. love and hugs
Helen

I agree with Brian that this is an entirely appropriate topic. Many has passed since I have been on the forum. Their caregivers need this information to be able to prepare for death and also to prepare the dying.

The mystery of it is the most disturbing aspect and that's what the hospice people do so well is to take the mystery out of it by educating the caregivers on what to look for and how to cope. They have untold experience with this sort of thing -probably better than any other source - sadly, including your doctor.

The actual process has been shared, in different forms, numerous times and can be pieced together with a little research in the archives.

Certainly this topic is not for everyone. Some here have enough fear dealing with the day to day realities of cancer as it is but this is a valid caregiver topic.

Before my father passed I had to prepare him for his death. What did that look like? It was a multidimensional thing. Obviously spiritual preparation but so were many other things, sharing feelings, clearing up misconceptions, last wishes, sharing memories, family history, etc.

My personal philosphy is to always be prepared for my death.

Please type the word recurrence into the main sites search engine. This will take you to a variety of places where it is discussed. I would also do the same thing in the message board search engine since it is a different section of the site, and the main search engine does not search postings. The statistics are there for people to look at, but please do not read too much into numbers. They do not necessarily apply to you, something that many here have echoed again and again. That does not make the fear/concern of a recurrence go away, it is a normal part of survivorship.

I also agree with Gary on the hospice advice. These individuals are remarkable in their ability to candidly discuss death and the process, in all its mystery many are able to help people understand the process and get to the place of acceptance without fear. But if anyone wishes to know about the details of the "physical" process, I would be happy to discuss them with you. Needless to say it is not an attractive process. As to the emotional and spiritual aspects, I am not an unbiased source of information, and I will stay away from that part of the discussion, though I have been with many in the process, both cancer patients and comrades in Vietnam.

I have gained much information from reading postings & have only posted myself a few times. I just want to say how very impressed I am with the way everyone handled Mike's question. He has the information he needs & tact & respect was used to protect other members. Very thoughtfully done. I continue to be amazed by the human-ness & compassion of this group. If I ever have to face my dear husband's death, I will decide how much information I want/need. Right now, when he has just finished treatment & is currently "cancer free" is not the time for me to focus on death from this horrible disease. Thank you all for your maturity & caring.

Mike,

I am truly sorry for your sister, you and your family. My heart, my thoughts and my prayers go out to all of you during this rough period.

I am sure you will receive many emails and/or private messages. I would be glad to relate my personal experience with my mother who passed away from ovarian cancer. My perspective will be more of the (definitely biased) incredible things that occured towards the end that eased my burdens. You can email me or private message me if you like.

Ed