Doc says malignant
Got my results in, and doc says it is cancer. He has scheduled me for surgery to remove my tonsils on 8/8/11. He said we need to also see if its spread. If it hasnt spread he can either do surgery to remove the lymph node which, with how large it is and where its located right now, would probably cause nerve damage and affect the appearance of the right side of my mouth, and possibly my speach, or he can do radiation to treat it. He recommended the radiation, saying cutting me open to remove the node could also cause the cancer to spread. I know I was reeling when he told me the news, so I may not have understood everything correctly, but this is what I heard. I did have my husband with me, but I think we were both floored at the time and we are both very confused, scared, angry and everything else you can think of right now. I did ask what we do if it has spread and I dont recall what the answer was, I was more going through the motions. I hadnt heard of anyone else here mentioning surgery to remove the lymph node so if anyone has any insight on that, please share. Im really trying to weigh my options right now with what little information I remember. I cant call to ask as hes now out of the office for the next week until my surgery date. Any help would be appreciated as I know Ive dropped the ball, didnt write anything down, and now that Im waking up from this nightmare 2 days later, im scared todeath.
Thank you for listening.
Jennifer
Comments
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Scared
My husband, Buzz, had tonsil cancer almost 10 years ago and he had a tonsillectomy followed by a right neck dissection. The surgeon removed 28 lympth nodes. Two of them were positive for cancer. He then had 6 weeks of radiation to his right neck. I believe that is standard procedure but your situation may be different. It looks like you have three beautiful children and I pray that your family can support you through the difficult months ahead. We are all here for you. Karen0 -
Thank you Karen.buzz99 said:Scared
My husband, Buzz, had tonsil cancer almost 10 years ago and he had a tonsillectomy followed by a right neck dissection. The surgeon removed 28 lympth nodes. Two of them were positive for cancer. He then had 6 weeks of radiation to his right neck. I believe that is standard procedure but your situation may be different. It looks like you have three beautiful children and I pray that your family can support you through the difficult months ahead. We are all here for you. Karen
He had
Thank you Karen.
He had the lymph nodes removed AND had to do radiation too? Was there chemo involved as well? My doctor didnt mention chemo but hes the ENT. Doesnt a different doctor set up treatment? I wish I would have taken notes or a list of questions but I really thought I was going to get good news...not this...0 -
Other way around for usbuzz99 said:Scared
My husband, Buzz, had tonsil cancer almost 10 years ago and he had a tonsillectomy followed by a right neck dissection. The surgeon removed 28 lympth nodes. Two of them were positive for cancer. He then had 6 weeks of radiation to his right neck. I believe that is standard procedure but your situation may be different. It looks like you have three beautiful children and I pray that your family can support you through the difficult months ahead. We are all here for you. Karen
Doug had tonsil cancer which had spread to at least one lymph node in his neck (how he first noticed it). The ENT took out the tonsil but decided not to do the neck dissection at that point, as he felt he got the tonsil tumor with a clear margin (lab work confirmed that). We then did radiation and chemo. The tumor did not disappear entirely, so they did the partial neck dissection (he might have done that anyway - he did still want to check all of the lymph nodes in the tonsil drainage field). The dissection showed that the tumor was totally dead and they found no cancer cells (alive or dead) in the other lymph nodes.
My understanding is there are arguments for both approaches - radiation first means it's harder to heal from the surgery; surgery first means a longer wait for radiation (and a chance to spread if any of the cells escaped the knife) plus you don't get to watch the lymph node shrink with treatment (one way they can evaluate the effectiveness of the treatment).
Some of the ENT's decision was based on the scans - only the affected lymph node (and the tonsil) lit up, plus one "maybe". I think this made him lean toward radiation first - he argued that it would mean he could do less surgery (indeed, he did not have to cut any muscles, nerves or major veins, as he was targeting just the few lymph nodes and no surrounding tissue).
I'd suggest you not go into any treatment you are not clear on. Our ENT was good about explaining everything to both of us several times - can you go back for a consult? Maybe have a third person come along? It's tough to hear right when you are scared - I know it took a couple of times for me on some things.0 -
I will certainly get anotherDrMary said:Other way around for us
Doug had tonsil cancer which had spread to at least one lymph node in his neck (how he first noticed it). The ENT took out the tonsil but decided not to do the neck dissection at that point, as he felt he got the tonsil tumor with a clear margin (lab work confirmed that). We then did radiation and chemo. The tumor did not disappear entirely, so they did the partial neck dissection (he might have done that anyway - he did still want to check all of the lymph nodes in the tonsil drainage field). The dissection showed that the tumor was totally dead and they found no cancer cells (alive or dead) in the other lymph nodes.
My understanding is there are arguments for both approaches - radiation first means it's harder to heal from the surgery; surgery first means a longer wait for radiation (and a chance to spread if any of the cells escaped the knife) plus you don't get to watch the lymph node shrink with treatment (one way they can evaluate the effectiveness of the treatment).
Some of the ENT's decision was based on the scans - only the affected lymph node (and the tonsil) lit up, plus one "maybe". I think this made him lean toward radiation first - he argued that it would mean he could do less surgery (indeed, he did not have to cut any muscles, nerves or major veins, as he was targeting just the few lymph nodes and no surrounding tissue).
I'd suggest you not go into any treatment you are not clear on. Our ENT was good about explaining everything to both of us several times - can you go back for a consult? Maybe have a third person come along? It's tough to hear right when you are scared - I know it took a couple of times for me on some things.
I will certainly get another consult once the tonsils are out and we do whatever we need to do to see if its spread. I think its called a pet scan? Not sure. Anyway, He said he will not do anything that I am unclear of and could see i was getting pretty overwhelmed during our visit so suggested we start with removing the tonsils and get that step done, then we can sit down and talk about our next step and options. I am really just kicking myself for not being prepared for the worst at the visit. I was feeling so spectacular the week before my appointment with him, that i was sooo sure he was going to tell me it was negative and i was fine.0 -
Deep breath
Hi Jennifer,
Take a deep breath and you will get through this! Try to write everything down (get a notebook) and ASK questions if you don't know something. You are in control. Everyone is different and but for the most part, treatment is similar although not exactly the same. Ask about a PET scan (can't remember if you had one). This is a great way for them to see if it's any place else.
There is always a risk that cancer can spread during surgery HOWEVER that is why it's important to have a doctor experienced in this type of cancer/surgery. As you can tell from all the wonderful members on CSN, you can get through this but stay engaged and take control and get informed.
Listen/read experiences of others.
Here is a brief summary of our story (Mike is my partner)
He noticed a lump on his neck and they tried to get cells from a fine needle aspirate but couldn't after a suspicious CT Scan. Had a PET scan which showed "hot spots" in the tonsil and neck area where his lymph node was swollen.
On 19Mar-he had a neck dissection-removed 42 lymph nodes and did a tonsillectomy. The cancer was in his left tonsil and 2 lymph nodes on his neck (that were swollen).
He had 3 cycles of Chemo (Cisplatin) and 8 weeks of radiation.He finished his treatment on 17Jun2010. He is 13 months post treatment and just had his 3rd clean PET scan.
Our doctor explained that chemo therapy was like a "mop" to clean up any cells that got loose during surgery or were floating around. The radiation was used to zap the area to kill any residual cells.
To us, radiation and chemo were like throwing extra life jackets, take them!!!
With the help of your physicians, the support of your family and friends (on here too), you will make the best decision. All our thoughts and prayers are with you.....it's going to be ok!!
Chris and Mike0 -
Jennifer,Chris & Mike,CLRRN said:Deep breath
Hi Jennifer,
Take a deep breath and you will get through this! Try to write everything down (get a notebook) and ASK questions if you don't know something. You are in control. Everyone is different and but for the most part, treatment is similar although not exactly the same. Ask about a PET scan (can't remember if you had one). This is a great way for them to see if it's any place else.
There is always a risk that cancer can spread during surgery HOWEVER that is why it's important to have a doctor experienced in this type of cancer/surgery. As you can tell from all the wonderful members on CSN, you can get through this but stay engaged and take control and get informed.
Listen/read experiences of others.
Here is a brief summary of our story (Mike is my partner)
He noticed a lump on his neck and they tried to get cells from a fine needle aspirate but couldn't after a suspicious CT Scan. Had a PET scan which showed "hot spots" in the tonsil and neck area where his lymph node was swollen.
On 19Mar-he had a neck dissection-removed 42 lymph nodes and did a tonsillectomy. The cancer was in his left tonsil and 2 lymph nodes on his neck (that were swollen).
He had 3 cycles of Chemo (Cisplatin) and 8 weeks of radiation.He finished his treatment on 17Jun2010. He is 13 months post treatment and just had his 3rd clean PET scan.
Our doctor explained that chemo therapy was like a "mop" to clean up any cells that got loose during surgery or were floating around. The radiation was used to zap the area to kill any residual cells.
To us, radiation and chemo were like throwing extra life jackets, take them!!!
With the help of your physicians, the support of your family and friends (on here too), you will make the best decision. All our thoughts and prayers are with you.....it's going to be ok!!
Chris and Mike
My
Jennifer,Chris & Mike,
My issue sounds very similar, I found a small lump in the right side of neck April 2011. Had a cat scan, my internist referred me to my ENT, who said my right tonsil was enlarged. He did a needle aspiration , May 2011, inconclusive, was going to scope my throat and voice box, sent me for a PET scan May 2011, results led him to remove the tonsil, June 27,2011.Gave me results July 2011, said rt tonsil was the source, and then there is the lump in neck,but scan didn't show cancer anywhere else. Saw the onco July 18, had a chemo port placed last week, PET scan this Wed, going back to see onco on Aug 1st, to go over results of recent PET. She has already told me I will start w/ 3 infusions over a 9 week period, then chemo /radiation...all of it is mind boggling some days. But, I know that it's going to be a day at a time..and the only thing to do is put one foot in front of the other.
Blessings & Light
Linda0 -
scared
I know you are scared....it is scary. don't read people's blogs, stay on this site. I read horrific stories before my treatments....
do take a friend with you and have her or him take notes. I took a good friend, but not my best friend and to this day she remembers things I have no clue anyone said to me.
I turned down surgery. I had stage 4 tongue with three nodes in my neck. I was to have extensive surgery followed by 35 radiations and 7 chemos or the radiation and chemo. I opted for the latter as the long term effects of the surgery were more than I could wrap my brain around. All my other docs (other than the surgeon) said I made the right choice. Who is to know?! I have been done with treatment since the week before Xmas and so far so good. I feel great and other than alot of weight lost (from 134 to 98 pounds and I am 5' tall) I feel wonderful.
Radiation is not for sissies but you have alot to live for.
Be brave, make a plan and remember to live in the moment. Don't worry about tomorrow and at this point in your life it is all about you! slow down and give yourself the time to get well and heal.
we will all be here for you if you need anything. I wish I had gotten on this site when I was going thru treatment. The people here are wonderful.
Peace
Nancy aka toughcookie0 -
pet scan before tonsillectomy?osmotar said:Jennifer,Chris & Mike,
My
Jennifer,Chris & Mike,
My issue sounds very similar, I found a small lump in the right side of neck April 2011. Had a cat scan, my internist referred me to my ENT, who said my right tonsil was enlarged. He did a needle aspiration , May 2011, inconclusive, was going to scope my throat and voice box, sent me for a PET scan May 2011, results led him to remove the tonsil, June 27,2011.Gave me results July 2011, said rt tonsil was the source, and then there is the lump in neck,but scan didn't show cancer anywhere else. Saw the onco July 18, had a chemo port placed last week, PET scan this Wed, going back to see onco on Aug 1st, to go over results of recent PET. She has already told me I will start w/ 3 infusions over a 9 week period, then chemo /radiation...all of it is mind boggling some days. But, I know that it's going to be a day at a time..and the only thing to do is put one foot in front of the other.
Blessings & Light
Linda
Do I get the pet scan before or after the tonsils are removed? He told me hes going to remove the tonsils first and then go from there. Does that sound right? Would kind of make sense to do it that way so we can see if anything spread during removal right?0 -
So similar....osmotar said:Jennifer,Chris & Mike,
My
Jennifer,Chris & Mike,
My issue sounds very similar, I found a small lump in the right side of neck April 2011. Had a cat scan, my internist referred me to my ENT, who said my right tonsil was enlarged. He did a needle aspiration , May 2011, inconclusive, was going to scope my throat and voice box, sent me for a PET scan May 2011, results led him to remove the tonsil, June 27,2011.Gave me results July 2011, said rt tonsil was the source, and then there is the lump in neck,but scan didn't show cancer anywhere else. Saw the onco July 18, had a chemo port placed last week, PET scan this Wed, going back to see onco on Aug 1st, to go over results of recent PET. She has already told me I will start w/ 3 infusions over a 9 week period, then chemo /radiation...all of it is mind boggling some days. But, I know that it's going to be a day at a time..and the only thing to do is put one foot in front of the other.
Blessings & Light
Linda
Hi Linda,
The similarities with everyone is frightening. I know it's a whirlwind but you can see from all the people on here (currently being treated, survivors and caregivers) that you can get through it!! This is your cheering section.
"One day at a time" is a perfect way to look at it.
God Bless....
Chris0 -
PETHeavenleah said:pet scan before tonsillectomy?
Do I get the pet scan before or after the tonsils are removed? He told me hes going to remove the tonsils first and then go from there. Does that sound right? Would kind of make sense to do it that way so we can see if anything spread during removal right?
Hi Jennifer,
Yes they will mostly request the PET before the surgery. This will be a baseline test that they can use to compare to others after treatment. Yes it sounds right-they will remove the tonsils and go from there-usually they do one big surgery (tonsillectomy and neck dissection). They aren't able to see if "anything spreads" during surgery because the cells are so small but that's what Radiation and Chemo are for...clean up!!0 -
No Dissection Up Front For Me
My cancer was discovered thanks to a huge lymph node on my right side. After a fine needle aspiration biopsy, docs recommended open biopies to check for spread and primary, and our agreement was that they could take my tonsil if need be. Tonsil was clean (but still taken) and base of tongue primary located, but not removed. I was told that surgery up front to remove the three spots at issue (base of tongue, and two lymph nodes) would not be an option for me. The plan was to hit the cancer with chemotherapy and radiation, and hope for the best. Another hope was that if the chemo and rads didn't eradicatethe cancer, they'd at least shrink the tumors and make the follow up surgery less intrusive. I understood that if the treatment wasn't complete, I could then have salvage surgery on my tongue base and/or a neck dissection to remove the nodes. The treatment wiped out two of the three spots, and I had a modified radical neck dissection nine months after chemo rads finished to remove all remaining lymph nodes on my right side (turned out to be five - only one cancerous).
And you CAN call to ask questions, even if your doc is out of town. Another doc should be helping to take care of your doc's patients. Even if your doc is the only one at the practice, you can ask a nurse or medical assistant your questions, and he/she can let your doc know your concerns.
It's very easy to get overwhelmed - especially during the early days of treatment. On my two "big" consulting days, I took two people with me, and I took notes. I still missed some things.
And yes, I've heard that the dissection is harder on you if you've had radiation - I'm thinking it may be six of one, half dozen of another - if I'd had the dissection up front, the surgeons would have been dealing with a very large lymph node that was wrapping itself around something else - that would have meant much more damage to me, I'm sure. I did have to have some muscle and nerve cut, but I continue to make progress.
I was sorry to see that you do have to deal with having cancer. You know that you have a large, helpul group of folks here who want you to do well.0 -
PET
For me the PET was after the tonsils came out, but before treatment began....
Also, I had a lump that had popped up as a secondary to the tonsils (primary). Due to the location, they decided to wait and see what effect the chemo and concurrent chemo/rads would have....
Nine weeks of chemo in three week cycles (Cisplatin, Taxotere and 5FU), the 5FU via a pump for 4 days each cycle.. For me the lump actually dissolved completely away after the nine weeks of chemo. I then had seven weeks of concurrent weekly chemo (Carboplatin) and 35 daily rads sessions.
I didn't have a dissection or any surgery other than the tonsils coming out.
It is a rough initiation and know all too well of your scare and shock. I was diagnosed on a Friday, sent home for the week-end and tonsils out that next Monday...
That entire week-end, I couldn't eat (although later I sure wished I would have..LOL)...
You'll get through it and more than likely it won't be as bad as you currently are thinking or imagining...
Don't get me wrong, it's tough and you are in a battle for your life. Life as you have known will forever be changed. And not all of that is bad....if you are like myself and others, it can be a small blessing in disquise. You'll more than likely learn to get back to basics and find an appreciation for small simple things that you have lost along the way.
But being that we are all different, some get through with minimally severe side effects, others have a very difficult time...you just don't know until you go through it.
Thoughts and Prayers,
John0 -
I can already tell this siteCLRRN said:So similar....
Hi Linda,
The similarities with everyone is frightening. I know it's a whirlwind but you can see from all the people on here (currently being treated, survivors and caregivers) that you can get through it!! This is your cheering section.
"One day at a time" is a perfect way to look at it.
God Bless....
Chris
I can already tell this site is a wealth of knowledge and support.
What shocks me the most is when I asked my ENT what the root cause was/is he said if I was a smoker or drinker he would say that , but I don't do either.0 -
HPVosmotar said:I can already tell this site
I can already tell this site is a wealth of knowledge and support.
What shocks me the most is when I asked my ENT what the root cause was/is he said if I was a smoker or drinker he would say that , but I don't do either.
Has he had the tissues biopsied for HPV....not being a smoker or drinker, there is a very real chance that HPV is/was the culprit... It doesn't matter in reality.
But HPV is actually on the way to becoming more of a factor in the very near future of H&N derived Cancer than tobacco derived.
JG0 -
I had a PET Scan, then sincePam M said:No Dissection Up Front For Me
My cancer was discovered thanks to a huge lymph node on my right side. After a fine needle aspiration biopsy, docs recommended open biopies to check for spread and primary, and our agreement was that they could take my tonsil if need be. Tonsil was clean (but still taken) and base of tongue primary located, but not removed. I was told that surgery up front to remove the three spots at issue (base of tongue, and two lymph nodes) would not be an option for me. The plan was to hit the cancer with chemotherapy and radiation, and hope for the best. Another hope was that if the chemo and rads didn't eradicatethe cancer, they'd at least shrink the tumors and make the follow up surgery less intrusive. I understood that if the treatment wasn't complete, I could then have salvage surgery on my tongue base and/or a neck dissection to remove the nodes. The treatment wiped out two of the three spots, and I had a modified radical neck dissection nine months after chemo rads finished to remove all remaining lymph nodes on my right side (turned out to be five - only one cancerous).
And you CAN call to ask questions, even if your doc is out of town. Another doc should be helping to take care of your doc's patients. Even if your doc is the only one at the practice, you can ask a nurse or medical assistant your questions, and he/she can let your doc know your concerns.
It's very easy to get overwhelmed - especially during the early days of treatment. On my two "big" consulting days, I took two people with me, and I took notes. I still missed some things.
And yes, I've heard that the dissection is harder on you if you've had radiation - I'm thinking it may be six of one, half dozen of another - if I'd had the dissection up front, the surgeons would have been dealing with a very large lymph node that was wrapping itself around something else - that would have meant much more damage to me, I'm sure. I did have to have some muscle and nerve cut, but I continue to make progress.
I was sorry to see that you do have to deal with having cancer. You know that you have a large, helpul group of folks here who want you to do well.
I had a PET Scan, then since that didn't show any primary, I had an exploratory. After they poked around lungs, throat, etc and didn't find anything, they had me stay, and my neck dissection was scheduled for the next day. I had 23 lymph nodes and my left salivary gland removed. Then had radiation. Erbitux was also recommended, but I chose not to do it.
You may either ask someone to come along with you that isn't as close to you as your husband is, to take notes. It's hard if you are reeling from the info that you are getting, to take notes as well. A few people have asked and been allowed to take a tape recorder in. Honestly, if I went by myself, that would be what I would have to do.0 -
My options
I had rt tonsil cancer. My options then (1996) were:
1) surgery - would probably get the cancer but would affect speech
2) chemo or radiation
3) Chemo and radiation. This treatment for this cancer, according to my doctor had a 90% cure rate so that is the route I took. I guess it worked cause I'm still here.
I too was in total shock, single parent with two teen aged boys and didn't know about these boards.
Hang tough and we'll be here with you.
Denny0 -
Thank you all for yourGreend said:My options
I had rt tonsil cancer. My options then (1996) were:
1) surgery - would probably get the cancer but would affect speech
2) chemo or radiation
3) Chemo and radiation. This treatment for this cancer, according to my doctor had a 90% cure rate so that is the route I took. I guess it worked cause I'm still here.
I too was in total shock, single parent with two teen aged boys and didn't know about these boards.
Hang tough and we'll be here with you.
Denny
Thank you all for your stories and journeys. I really appreciate all of the information. I know there is stuff being said for caregivers and such. I am 36 and my husband is 22. Hes downright terrified but sticking in there. I have 4 children, One already gone and 3 younger ones. I have no other support here in the town im in aside from my husband, whos shaking in his boots. Would it be recommended by you all to relocate where we have more help and support or is the 1 caregiver enough? His family is really pushing for us to move to Arkansas to be near them, so they can help with the kids, and be there if Nick gets overwhelmed. Am I really going to be that much of a burden that my husband wont be able to handle it all?0 -
Jennifer, My wife ConnieHeavenleah said:Thank you all for your
Thank you all for your stories and journeys. I really appreciate all of the information. I know there is stuff being said for caregivers and such. I am 36 and my husband is 22. Hes downright terrified but sticking in there. I have 4 children, One already gone and 3 younger ones. I have no other support here in the town im in aside from my husband, whos shaking in his boots. Would it be recommended by you all to relocate where we have more help and support or is the 1 caregiver enough? His family is really pushing for us to move to Arkansas to be near them, so they can help with the kids, and be there if Nick gets overwhelmed. Am I really going to be that much of a burden that my husband wont be able to handle it all?
Jennifer, My wife Connie found out she had stage IV tongue cancer because she had 2 lymph nodes in her neck swell up. She went to a ENT doctor and he sent her for a needle biopsy which came back positive. We wanted Connie to have surgery right away to remove the infected lymph nodes but when we seen her doctor at MD Anderson treatment center, she recommended induction chemotherapy for 9 weeks followed by radiation/chemo for 7 weeks. We were devastated by this news but to our surprise after her first chemo treatment Connie's lymph nodes returned to normal size within a week and the doctors said she had a dramatic response to the chemo. If you do not smoke or drink, their's a good chance you are HPV positive which reacts better to cancer treatment. You should have your tonsils removed if that is the primary location of your cancer but chemotherapy worked well for Connie. She followed up with radiation to make sure all the cancer cells were eradicated. You should check out the cancer treatment centers in Arkansas if you decide to go there because you will need the best doctors you can get and the truth is with 3 children at home you can use the help from family. You are very young and this should work to your advantage so stay strong and keep a positive attitude and you can and will beat this. I am a caregiver and I took Connie to all of her chemo and radiation treatments and I wished I had family around to help as it can be overwhelming at times. Your friends, Homer & Connie0 -
As others have said, it is very hard to predict how much you will be able to do for yourself and at what point, if ever, you will require more help than your husband can provide.Heavenleah said:Thank you all for your
Thank you all for your stories and journeys. I really appreciate all of the information. I know there is stuff being said for caregivers and such. I am 36 and my husband is 22. Hes downright terrified but sticking in there. I have 4 children, One already gone and 3 younger ones. I have no other support here in the town im in aside from my husband, whos shaking in his boots. Would it be recommended by you all to relocate where we have more help and support or is the 1 caregiver enough? His family is really pushing for us to move to Arkansas to be near them, so they can help with the kids, and be there if Nick gets overwhelmed. Am I really going to be that much of a burden that my husband wont be able to handle it all?
Things to consider:
- The benefits of keeping the kids in a location they are used to vs moving them to be with family. How well do they know your husband's family? How long have they lived in your current neighborhood? I know that my kids have always been more comfortable in their own home during crises (we've had a few besides cancer).
- Your in-laws: more people helping is not necessarily the same as the right people helping. There have been a few stories on this board (and, you or your husband should check out the Caregivers board, as there are some lulu's) about in-laws that were clueless at best and toxic at worst. I'm not saying that describes your in-laws - only you know can make that call. One thing that immediately comes to mind for me: if they are going to help take care of the children, is their parenting style compatible with yours? No judgements, but I have a few family members that I don't see eye-to-eye with regarding disciplining kids.
- Must you relocate for the in-laws to help? Are there a couple who could come stay with you during likely times, such as chemo weeks or the last 2 weeks of treatment? It could be even just a long weekend here and there.
- Your possibly overwhelmed husband: Again, encourage him to check out Caregivers. Everyone feels overwhelmed at times and we try to support each other - I am constantly amazed and humbled to hear what some of those folks have been through and emerged stronger. Talk to the ACS - my lovely sister-in-law who works for the ACS sent me the entire caregiver package: organizational guides, cookbooks, lists of resources. Your hospital might also provide caregiver support.
- Someone else mentioned access to your care. What would be available to you if you moved? It sounds like you have a supportive ENT currently - if your local hospital has a strong cancer program, can you be certain you would match it if you moved?
- Odds and ends. Finances, jobs, health insurance - how would these all be affected by a move?
This is a lot to think about, and it's hard to make a decision when you don't know what's coming down the road. I strongly recommend checking out the resources in your area, even discussing this with the social worker at your hospital, before making a final decision.0 -
I agree with DrMary, be sure to think about all the consequences. Jim and I relocated but out of necesity. The cancer centers in the area we lived did not accept our insurance. Luckly there was one within an hour of where we were buying our retirement home and that home was 30 minutes from family. Close enough to help but far enough not to interfere. As a caretaker I can say that I do feel lonely sometimes and overwhelmed. There have been times when I wished I was closer to my mother and family but then I come to my senses. LOLDrMary said:As others have said, it is very hard to predict how much you will be able to do for yourself and at what point, if ever, you will require more help than your husband can provide.
Things to consider:
- The benefits of keeping the kids in a location they are used to vs moving them to be with family. How well do they know your husband's family? How long have they lived in your current neighborhood? I know that my kids have always been more comfortable in their own home during crises (we've had a few besides cancer).
- Your in-laws: more people helping is not necessarily the same as the right people helping. There have been a few stories on this board (and, you or your husband should check out the Caregivers board, as there are some lulu's) about in-laws that were clueless at best and toxic at worst. I'm not saying that describes your in-laws - only you know can make that call. One thing that immediately comes to mind for me: if they are going to help take care of the children, is their parenting style compatible with yours? No judgements, but I have a few family members that I don't see eye-to-eye with regarding disciplining kids.
- Must you relocate for the in-laws to help? Are there a couple who could come stay with you during likely times, such as chemo weeks or the last 2 weeks of treatment? It could be even just a long weekend here and there.
- Your possibly overwhelmed husband: Again, encourage him to check out Caregivers. Everyone feels overwhelmed at times and we try to support each other - I am constantly amazed and humbled to hear what some of those folks have been through and emerged stronger. Talk to the ACS - my lovely sister-in-law who works for the ACS sent me the entire caregiver package: organizational guides, cookbooks, lists of resources. Your hospital might also provide caregiver support.
- Someone else mentioned access to your care. What would be available to you if you moved? It sounds like you have a supportive ENT currently - if your local hospital has a strong cancer program, can you be certain you would match it if you moved?
- Odds and ends. Finances, jobs, health insurance - how would these all be affected by a move?
This is a lot to think about, and it's hard to make a decision when you don't know what's coming down the road. I strongly recommend checking out the resources in your area, even discussing this with the social worker at your hospital, before making a final decision.
I try to do everything for my husband, not because he is unable to but because I want hyim to use every ounce of strength to fight this demon cancer. This website is a God send for me. I just this morning told Jim that this site was like having a church family that prayed and supported you.
As we always say, everyone is different, I like being alone sometimes but others can't be alone, only you know what is best for you and your family so do not let anyone pressure you. Consider all the positives and negatives. I am a pastor and was living in the church owned parsonage and had the insurance problem so that decided for me. Wish I could have weighed the opptions because the church family would have helped a lot if I could have stayed.
Praying God will give you clear insight as to what is best for you and your family.
Blessings
Debbie0
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