My mom (70) was just diagnosed with stage 4 throat cancer. She's talking to a couple of doctors about treatment options - one in Arizona (where she spends the winter) and another in Boston (where I live, near my sibling and other extended family members), where I would be the primary care giver. She's coming to Boston for a consult this week, so we will know more then.
I'd like to get feedback from others about their experiences during treatment, so that we (she) can decide which location might be best. Arizona is familiar to her; she has a pool, a gym, and other regular places that she visits. She has friends there, although many will be leaving during April. She has a companion who can provide care. He is dependable, although not the most empathetic or flexible person. I'm concerned that she won't get the quality daily care that she needs there.
In Boston, she would be living with me, and we will have an extra bedroom where her friends can stay if they want to visit. We can definitely create a comfortable home for her, but other than extended family, she has no friends here, no gym, pool, etc, although I'm sure that can all be arranged. I'm nervous about being the primary care giver. Our relationship is sometimes a challenge, to say the least, but doing this feels right to me.
Any thoughts or suggestions for us as we review the options? Thanks in advance.
Welcome to OCF! Glad you have found this resource to help get your family thru everything. OCF is full of correct info and support.
The very best treatment centers in the US are called comprehensive care centers (CCC). Here is a list which can help you to decide where your mother will be treated.
Cancer Centers Right now try to encourage your mother to eat all she can. Its important to get all her favorites now as her sense of taste will change for a while.
Best wishes!
Hi Christine, thanks. I'm hopeful that she'll agree to treatment at Dana Farber here in Boston. She's worried that it will be too big and less personal than the doctor/facility that she saw in Arizona (who's not on that list).
There have been studies that proven the best outcomes will be with patients who are treated at a top cancer center. Its where they attract the brightest doctors and are up to date with all the newest technology and treatment protocols.
As far as a doctor who has the personal touch, that can be found anywhere. Nice doesnt mean they will cure the cancer.
Choose very carefully, but dont take too much time in making that decision. Getting rid of the cancer needs to be done as soon as possible. Oral cancer can be a very aggressive, fast moving cancer. By treating it quickly, hopefully it will be at a lower stage so its easier to treat.
Your mother will need a caregiver for at least 3 months depending upon the treatment plan. This type of cancer isnt a walk in the park like some other more commonly known cancers. I dont mean to scare you but it can be a pretty rough go for some, then you have others who will sail right thru. She may not feel up to a pool or the gym for a while, plus her blood count numbers could be low which means she needs to avoid public places. That is very common with cancer patients. At the very least, round someone up to check on her daily and who will provide her transportation. If she is planning on driving herself, that will probably need to be changed so its best to be prepared. By planning for the worst, when its not so bad that can be a nice surprise. Im positive being a caregiver for a parent can be challenging at times but she will need someone who is with her or I am 100% sure she will have a difficult time of it.
Where You Are Treated Best wishes!
Sorry you and your mom have to come on the roller-coaster ride, nevertheless, a hearty welcome to this unique group. During treatment you mom will need someone who can manage her day for her, including when and how much she has to eat and drink, giving her her meds, monitoring her reaction(s) to the treatment and talking to the doctors and the nurses at the hospital. Fatigue is the main side effect of radiation treatment and can continue for months or even years afterwards. For this reason, she probably won't want to use the gym or the pool until she is sometime into the recovery phase. For these reasons, I would think that being closer to you and other family members will be easier for her.
You will also need a break from time to time when caring for your mother. So, having other family members around will be a big help for you.
Your mother is indeed very lucky to have a caring and loving child in you. All the very best.
Another option is to have a consultation at a CCC, like Dana Farber, and have them set up the treatment plan..type chemo, radiation fields, etc. and then do the treatment locally, with both their approval. Good luck with everything.
everyone, thanks for the advice. Last night, she seemed more willing to do the treatment here. Glad about that. Still nervous and overwhelmed by all the unknowns. Aargh. Not sleeping well either.
LB, in my opinion, since Dana Farber is one of the very best places in the country that puts it in the lead. Add to that the fact that you will be there, and that the Boston winter is behind you and it seems a clear choice to me. Treatment for this cancer is tough but doable. Your mother will be very tired. We all know the challenges inherent in adult parent-child relationships, but she's going to need a lot of help and you're the best person to provide it. Bu it's not going to be easy for you either. Your comment about not sleeping well, already at this point, is very telling. I'm sure that the hospital has resources to help you deal with it all as well and I urge you to take advantage of them.
You're now part of our family so please come here for questions, rants and anything else. We're here to help.
I would have her come to be around your family truthfully she'll need a lot support
and Dana farber does cancer all the time every day she's better of in a place that does extensive treatment and has a lot of experience with this type of cancer. Personal doesn't matter outcome does. Hugs. -and sorry about your mom...
Treatment will definitely be at Dana Farber. It seemed like a no brainer to me, but it's her body, her choice, as the saying goes.
Last week we saw the three doctors - radiation, chemo, and surgeon and the PET scan was done, which showed the 2 tumors we knew about plus a third one. The tumor board meets on April 4. We've heard that surgery might be possible, but it probably won't eliminate the need for chemo and radiation. Not sure when or how the tumor board results will be communicated to us - via phone call or in person. We don't have an appointment set up for that, although we do have others next week.
Before the tumor board meets, she will see the dentist and the surgeon again. An appointment has already been made for radiation mapping on Thursday. If treatment is "just" radiation and chemo, radiation will start on April 22, with a dry run on April 18.
I have many, many questions! What do I need to know to best advocate for my mom? She wants to focus on the best case scenario. I want to plan for the worst and hope for the best. What questions should I be asking and services should I be seeking? How best can I communicate appointments, etc. with the multiple family members who need to know?
For people who've done chemo and 35 weeks of radiation, how many needle sticks did you have? She doesn't want a port, but she has limited vein access. I would like to give her accurate information so that she can make an informed decision. She's concerned about scarring and cleaning the port (although I believe the doctors said that would happen at the treatment center).
Thanks in advance!
Good to hear she's at farber where are the tumors? Tongue and neck? Scarring is nothing when your Life is on the line... If the tumor is on the oral tongue and they offer surgery it's a good idea to Take it as oral tongue cancer is usually treated with this first then follow up treatment with rads an chemo. With three tumors rads is almost definite.
Write everything own including questions a bring your notebook when you go to appointments.
Our hospital has a system whereby they have a Card with your number and all appointments are computerized so they print out a List of all upcoming appointments each time you in - ask if h Mre something similar. Best of luck
Hi LB
Good girl!! wish we had had one of you. That you are so on top of everything and treatment hasn't even started yet, puts you well ahead of the game.
My thoughts re the needles is to get the port. One thinks "ah yes, it will just be a couple of IVs on chemo days - not so bad" turns into "what, you need another blood test?". Alex and I did it both ways after his PICC (same as a port) failed after chemotherapy and he elected to go without for the rest of the treatment which was all the chemoradiation. We spent the entire 7 weeks telling each other that it was "just one more" and every week there was another reason to stick him with a needle. If your Mum's veins aren't that crash hot in the first place, this might be even more reason to do it. It also cuts treatment time down a bit as you don't have to wait for a nurse to insert the IV, you won't stuff around with the inevitable day when the nurse can't find a vein or the vein she DID find collapses. In my opinion, it is just one less stress that your mum needs to deal with.
The questions often come just AFTER you have walked out of the doctors rooms, so I would suggest you carry a book, or some other device to record your thinking. This way, whatever you thought of can be immediately written down and asked either via email or at the following appointment. My book was small enough to live in my handbag and had a little pocket to stick the inevitable loose notes that are collected.
I had a couple of sections: One to write down what the doctor said at the appointment and sometimes for them to draw pictures if I didn't understand; one to write down questions as I thought of them and one for appointments and things ToDo.
I also had a big piece of paper with the names of all the drugs and the doses broken into squares for morning, lunch, evening and before bed and Alex would put his drugs on top of the paper to make sure he had them all before he took them. Alex got very confused during his chemo and I was not always around to supervise.
I also found that writing a sort of journal helped as it kept my head straight and when I needed to tell the doctor which pain killer Alex had last week, I was able to name it AND tell the doctor my interpretation of why it was prescribed.
It also came in handy when I went into battle with the hospital but I'm sure this won't happen to you
Regarding informing family and friends: elect someone you trust to tell, and then let them organise the logistics of how to get the information out to those who need to know. I told 4 people what was going on - my boss who shared with those who needed to know at work; Alex's mother who shared with family and friends in New Zealand; my mother who shared with friends and family in Newcastle and one of Alex's scaly mates from the pub who put the word out around the local traps. I also wrote very long emails to a friend in Melbourne, but that was more to vent than share information
Now that I am a facebooker (:)) I would probably recommend that updates be put on a private group there too.
Cheryl and klo, thanks for the feedback. You're great! If it were me (or my sister) with cancer, treatment at Dana Farber and getting the PEG and the port would NEVER even be questions. But my mom is concerned about all these things, so my sister and I are trying to provide her with all the pluses and minuses so she can feel comfortable with her decisions.
Will respond to your other comments and questions later today, when I'm sitting down and reviewing everything.
HI Littlebird,
I'm a male, nearly 74, and I've been dealing with Oropharyngeal cancer since August, '09. I've actually had it much longer, but didn't get diagnosed until I was stage IV.
I immediately picked up the fact that your mother likes to keep in shape. You've no idea how important that can be to a cancer patient, believe me, it''s HUGE!!!
So let me start with advice that is counter to what everyone else will tell you. That is, do whatever you can so that your mother can continue to exercise while going through this process. It can be done and other than the first time I was treated, I haven't missed a workout due to chemo. When I get too tired to do any more, I quit and go home.
I've had a lot of chemo (Carboplatin and Taxol; carbo & Taxetere; and finally Xeloda (a pill form of 5FU.) I have felt fine 99% of the time - other than tired - and utterly no nausea (other than the Cisplatin). Once one has experienced Cisplatin, one will understand the benefit of that "no nausea." Read my intro (dated today) for more on this.
I'll bet that the first Chemo agent they use will be Cisplatin. Obviously, if I had the hindsight to do so, I would have refused the port and gone to the gym. As it is, the port has a tube that goes directly into the Jugular Vein - you don't want to pull it out and bleed to death internally, so you are restricted to lifting less than 10 lbs while you have a port. She could continue to swim if she didn't have the port.
Without working out, nausea will be a real problem. I lost 38 lbs because I simply could not keep anything down beyond a single bottle of Ensure plus (350 calories). The port is nice, but being able to work out is nicer.
My cancer came back after 17 months. That time, I refused a port and got an IV once a week for three weeks in each cycle, and I had 5 cycles that time and worked out. That time I got the Carbo/Taxol/Taxetere cocktails. I advised a woman in MI at the time, who was undergoing the exact same cocktail; she spent the first 5 days after each infusion in the fetal position. She did not work out.
After the end of my second cycle of that cocktail, I had a conference with my MO who asked me how I was tolerating the current chemo. I mentioned that I had noticed a bit more hearing loss, but more concerning to me was the fact that I was starting to get exhausted mid-way through my weight-lifting workouts.
He nearly fell on the floor laughing. When he stopped, I asked what was so funny? He explained that in over 20 years, he'd never had a patient use "Chemo" and "workout" in the same paragraph! Draw your own conclussions.
This brings up another point, the importance of proper nutrition during the survival process, and survival is the name of this exercise. Surviving any life-threatening event is an energy-intensive activity, and the need always comes when one is least able to acquire the needed energy. This forces the body to consume muscle and weakens it overall. Ensure (or equivalent) is a good solution. Jevity (the product that is fed through a PEG) is another.
klo gave excellent advice about being Pro-Active. Take nothing for granted and question everything. Doctors do good work and having saved my life on a number of occasions, I won't condemn them here, but do pay attention and follow up on every promise. Don't assume that because a doctor says something will happen, that it will. You will have to follow up and hold their feet to the fire to make things happen as they say they will.
Finally, to you and the world at large, medical grade cannabis is a life-saver. While I was taking Cisplatin, I would not even have been able to keep a single bottle of ensure down, so severe was my nausea. My doc tried three very expensive anti-nausea drugs but each seemed to make things worse. Finally, I got some cannabis indica and that gave me immediate relief and made it easy to sleep. Avoid the synthetic crap that can be obtained legally, it does nothing for me.
I don't think working out has anything to do with how you react to chemo, in that case, I should never had a problem. I ran, biked, swam, boxed, and lifted weights, since I was 15, amongst several martial arts programs in between, and all my jobs required me to be physicaly fit, and be a deterrent, sometimes physically. I started chemo at 245 lbs, and after a severe reaction to the same chemo, Taxotere, Cisplatin. 5-FU, near death, I was 130lbs in less than a month. The side effects are too numerous to list. I think of it similar to an allergic reaction, some have no problems to certain foods, and some do. Can't do much to change that, just change the food, limit amount of exposure, duration, in this case toxin, if you can, and sometimes all it takes is once, and that's why they give you all the other meds to lessen the toxicities and side effects.
[quote=PaulB]I don't think working out has anything to do with how you react to chemo, in that case, I should never had a problem. I ran, biked, swam, boxed, and lifted weights, since I was 15, amongst several martial arts programs in between, and all my jobs required me to be physicaly fit, and be a deterrent, sometimes physically. I started chemo at 245 lbs, and after a severe reaction to the same chemo, Taxotere, Cisplatin. 5-FU, near death, I was 130lbs in less than a month. The side effects are too numerous to list. I think of it similar to an allergic reaction, some have no problems to certain foods, and some do. Can't do much to change that, just change the food. In this case toxin, if you can, and sometimes all it takes is once, and that's why they give you all the other meds to lessen the toxicities and side effects. [/quote]
Hi Paul, you make a good case; and I'm sure that that is very likely the case with you. But I am not convinced that this (allergy analogue) is the case in all, or even most cases; the reason being the dramatically different reactions in my case, between not working out during the chemo and doing so during the chemo.
May I ask if you continued to work out while you were being treated?
My MO and I have discussed this at length, and he is convinced to the point that he has started advising his patients to give it a try.
But you do make another good point, that being that no protocol is a "one size fits all." What works well for one patient may not work at all, and may even prove counter-productive for others. But working out can not hurt (cause further harm) if one can do it; but it can help.
I offer this in the hope that it does. It definitely helped me enormously.
Please, lets not get too off track with this thread. Lets focus on the original poster's (littlebird) questions and concerns. Any side discussions can always be put on a new thread and discussed there or taken to private messages (PM's).
Thanks, guys. You've made me laugh! A good work out for my mom is doing yoga, walking with one pounds weights, or swimming. I'm not worried about her getting exhausted during any weight training sessions. ;-) I do worry about nutrition because she is at the bottom of the healthy weight range for her height. I don't think that she can afford to lose even 8 pounds (and clearly the rad oncologist thought so too at the visit on Thursday), and I worry about the blood sticks not because of a fear of needles, but because she has lymphadema in one arm and limited access in the other. She's afraid of reduced vein access.
She's been resistant to both the PEG and the port, but I think she now accepts (as of this morning) that both will be necessary tools during treatment. Or at the very least, lesser evils than dehydration or high anxiety during blood draws or IVs. It's a huge weight off my shoulders. She was extremely angry/stressed/unhappy when the IV took 3 attempts last week.
On Monday, she has exploratory surgery - endoscopy to look at vocal cords, etc., plus a biopsy in the tumor to test for HPV. I'm off the get groceries including ice cream, popsicles and soft foods for the week. Is there anything that I should bring for the car ride back home (which will take about 2 hours due to the red sox season opener)? Or anything that I should have here in the house?
Hi again, Littlebird,
Your mom works out smart! Congratulations!
I'd add some ensure plus (350 cal/bottle). Easy to take, even just as a weight gain supplement. You might also stop into a shop that sells supplements to bodybuilders for weight gain, and run the nutritional information by your MO to ensure that there is no problem with taking it.
Bananas are good for weight gain, but again, check with your MO.
lb, so sorry u need to be here but glad u found it before trmnt. one very important thing for your mom to remember is to eat as much as she can while she is able. also, stay hydrated. both of those are extremely important. I can't really add any other info b/c my cancer was different but the rad will make it hard for her to eat. it will also make food taste bad or not at all. I wish you the very best as you go down this road and pray for you, your mom, and your family. it is a rough road but it is doable. I will keep you all in my prayers.
debbiejeanne
Met with the surgeon and the chemo oncologist this morning for the treatment recommendation (tumor board met on Wednesday). They've given us a choice of surgery followed by weekly cisplatin + 30 radiation treatments OR no surgery, only weekly ciplatin +35 radiation treatments.
The surgeon felt that the tumor could be removed without impacting the tongue muscles, as the tumor above the tongue at the left tonsil. Lymph nodes on the left side of the neck would also be removed.
I need to check with the rad oncologist to see what how surgery might change the radiation treatment. Less radiation would be desirable, I think.
Any thoughts or opinions? We need to make a decision very soon. Thank you.
I was originally told surgery, plus 30 rad plus chemo. The surgery was so successful, no rads or chemo were done (I was given the choice to still do radiation as I was in the middle of whether they would recommend or not).
The consequences of radiation are so severe, that I declined the rad option, so my view would be the least rad, the better.
Tina, thanks for the feedback. We were told that she would still need rad and chemo after surgery. I'll ask the doctors the following:
-with surgery, is there a chance that rad and/or chemo will not be necessary?
-what makes it more or less likely after surgery?
I agree with your view about radiation and chemo. I'm not a surgery person myself, and I've avoided it when it was an option, but I personally lean towards it in this case. But it's not my choice, thank goodness.
Its not easy for any of us to weigh in on what would be best for your mothers situation. One of the most important things is to be treated at a comprehensive cancer center (CCC). These facilities have an entire team of specialists who will discuss your mothers case and make a treatment plan individually just for her. If she is already at a CCC then a second opinion at another CCC would be a good idea. Believe it or not, being treated at a CCC really does make a difference.
Best wishes!
PS... I have seen many patients in their 70s go thru radiation and go on to lead good healthy lives after treatments. Not everyone who has radiation (any age patient) will encounter problems, some sail right thru. Of course radiation can have its side effects, some long lasting. When it comes to treating oral cancer only surgery or radiation with or without chemo (or a combo of both surgery and rads) are the only ways to get rid of the cancer.
Most head and neck cancers are diagnosed in the 6th and 7th decade of life, ungil rcrntly, and most studies, I believe, we're done in this age group. I also read that this age group does well receiving treatment, just as a younger person, but I think any commorbities, underlying medical conditions, in any any age group, may have an effect. If the doctors recommended this treatment, they would not do so if they thought otherwise. Good luck with decision making.
[quote]Believe it or not, being treated at a CCC really does make a difference.[/quote]Hi Christine,
I know you are really pro CCC and I agree that these centers likely offer the smoothest workflows, most integrated inter-department procedures and computer systems, more focused and specialized, and in general just plain easier to go to a "one stop" solution.
However, I believe strongly that equal care can be had and possibly even better via point solution providers. I think there are HNC specialists in each key area: ENT, surgeon, MO, RO that exist outside the formal NCCN CCCs. You would likely have to do more research and also have a fair amount of luck to build your own team but I think it is realistic.
That said, given the way a cancer diagnosis is hurled at nearly all of us, leaving little time to do such planning and research then I agree going to a known NCCN CCC is a very good option.
So, why am I carping about this. Because I feel just plain fortunate to have a team that is combined from a couple different yet partnered medical systems that I trust totally with my life and care. I did not choose this option and it more or less fell into my lap but I have full confidence and trust in them all. The tumor board that assembles each week is from at least two different care systems so I feel this is even better than tumor boards composed of all members of the same organization. To me I get broader and more balanced and less biased recommendations as all are not under a single central authority which likely has some dictums and strong opinions on standard of care that they need to sing off the same song sheet.
Also, there are the logistical complications of traveling and getting all service from a CCC that might be hundreds of miles away, making it very hard for some folks to temporarily relocate due to family and job duties and such.
I'm just offering a different perspective that if you do not make it to a CCC, you can still have great odds and not feel like you are receiving second class care or a death sentence by seeking alternate provider options.
don
True, in some sense, Don, and also for better outcome in CCC. There is only one NCCN hospital in NYC, Memorial Sloan Kettering, out of hundreds, and doubt few are better than some here in NYC, that are also top in the U.S. and internationally. Just a few off my mind are Mount Sinai, Columbian Presbyterian, NYU, Montifiore. I don't know what the NCCN inclusion entails, and maybe these do not want to belong, and are not just cancer centers, but top in many other specialties, which matters to me too. There are other listings like U.S. News Reports Best Hospitals, NCI designated cancer hospitks, Chase Connely's Best Doctors, New York Magazine's Best Doctors, and Hospitals to name a few.
I was treated at Mount Sinai, and now at Beth Israel, both CCC. The other thing is top hospitals pick you, you don't pick them. Memorial Sloan Kettering did not even want to see me for a consultation, and said I was in good hands when hearing where I was treated, and seeking another consultation. Also, many of the high profile doctors in CCC, are probably further away, may have a limited schedule, are often away, may spend less time with you, and or have an assistant see you. I go for having a local doctor for certain care, and top CCC for my major care, like surgery, testing, which I do. Trust and gut feeling, also factor in.
Several reasons I did not go to MSK initially, is Mount Sinai had an office locally, where my ENT had office hours once a week, and was recommended by another ENT. They also rated higher rate for ENT thsn MSK. and I had a mental block for a hospital for only cancer patients, thinking these were for sick people only lol, and I underestimated this cancer, and also did not belong to an support groups or similar. and did not ask any opinions, which I still rarely do.
My current Radiation Oncologist wrote the book on Multidisciplinary Care, and sort of chastised me for having doctors all over NYC lol. He said I have to be treated at one place, which was my initial plan in 2009, but after my severe debility from chemo, I did not want to see anyone my local oncologist didn't suggest, but did keep my ENT, and formed my own team later on. She visited me every day while I was hospitalized for several months, oversaw my care, and saved my life , but last July, I did have to go elsewhere after a recurrence, which few could treat, but I still see her for the anemia, other issues, and at least would go to our local hospital in event I'm admitted here.
Of course a patient can find qualified medical care anywhere. There are good doctors all over just like there are bad ones. We all need to find a team where we trust them, after all this is a battle for our lives.
A CCC is where they attract the brightest and most talented physicians and specialists. These facilities will normally have the best of everything including equipment. At a CCC a team based approach is used where all the specialists meet weekly to discuss each individual case. They will all be on the same page making a treatment plan with all the specialists weighing in as what is best for the patient.
Regular hospitals do not normally use a team based approach, nor do they always follow the NCCN guidelines. Too often the radiation oncologist advises the patient they need radiation, the chemo doc says use chemo and the surgeon says lets operate. Ive seen many instances where these places are not familiar with treating oral cancer patients so they are inexperienced which has a major negative impact on the patient.
It is not only my opinion that a cancer center is better, this is a proven fact. There have been studies done supporting why cancer centers are better equipped to deal with oral cancer patients. Of course a patient can have a successful outcome at other locations as well. Some patients will have only one shot at this and if given just one chance at eliminating the cancer then they will want to go to a CCC. This is also important in complicated and recurrence cases to give them the best chance of survival. Why not go to where they treat hundreds of cases a year and are the most experienced to increase your odds of successful treatment. Treatment and getting rid of the cancer is the most important thing, everything else including finances arent as urgent.
Where you are Treated Matters article
Hi Littlebird,
My case is different, but it seems that I have a body that was built by the Timex folks, it takes a lickin' and keeps on tickin;.
I had 8 weeks of max radiation, and it didn't bother me. I had but three (massive) doses of Cisplatin, three weeks apart; and it flat kicked by butt! I lost 38 lbs in 90 days because I simply could not keep more than a single bottle of Ensure Plus in my stomach, and that only after smoking some illegal substance (cannabis).
But in the short time I've been here, I've seen that there is a wide response spectrum to the various treatments (Rad, chemo and surgery). My point is that you should choose the therapy that offers the best chance of success, and ignore the potential consequences.
You know what the consequences of not surviving are. I can't advise what the best treatment in your (mom's) case might be, but I'd put the question to my MO and go with his/her recommendation. Consequences can be dealt with, death takes care of itself.
I hope goes without saying, but I'll say it anyway; with al my heart, I wish your mom and you the very best possible outcome
Thanks for the feedback. Some answers:
-she is being treated at a CCC - Dana Farber in Boston.
-We are waiting results for HPV. The doctors tell us that the results will not change their treatment recommendations.
-The team (after the tumor board review) has given us the two options and say that the end result will be the same. This gives me great comfort that we cannot make a wrong decision. It's up to us to make the choice. Needless to say, the surgeon is pro surgery, and the chemo onc. prefers the non-surgical option!
-The options:
-surgical option: surgery+chemo+rad
-non-surgical: chemo+rad, with a 33% chance of need surgery post-treatment.
Of course, we feel a lot of pressure to make a decision very soon. If she goes the non-surgical route, then we have the rad dry run on Thursday and chemo the following Monday.
I know every case is different, but for what it's worth, my husband was a chemo, then chemo/radiation patient, with surgery left on the table as a possibilty, if needed. He's one of the lucky ones, the chemo/rad's worked very well (2 clear scans, knock on wood). It's our understanding that what really works to kill this cancer is not the chemo (only shrinks), but the radiation.
Have the explained the risks to you of going both ways? My husband had the same 2 options, although from 2 different institutions, and the chances of survival were the same either way. My thoughts are if you're at a really good CCC, let them try to get it with the chemo/rad, then use surgery as a salvage treatment, hopefully avoiding the further insult of surgery.
Hi little bird, the difference that HPV and non HPV status makes is this. HPV cancers respond well to rads and chemo, and non HPV cancers are often best dealt with by using surgery, then rads and chemo - just because non HPV cancers can be more aggressive.
Take care.
I actually found that the surgery was a piece of cake compared to the rads and chemo, but mine was negative for HPV.
I was also HPV negative. The reason why they gave me the rad option was that the tumor was entirely removed with clear margins in the tongue and all of the nodes removed through the neck dissection came back negative for cancer.
My surgeon never anticipated that rads would not be necessary as my PET was positive on both sides of my neck for lymph node involvement (turns out a false positive).
At the end of the day, your mom will have to weigh the pros and cons of each option, but I feel very fortunate to not have had to go through radiation.
Good luck!
Ditto what Tina said... surgery is a much easier recovery than rads and chemo, and the long lasting effects of rads and chemo are way more difficult than the tightness, and arm weakness from surgery. Both of which will change over time with therapy. Take care.
I really doubt it will be HPV+ and if that's the case I would treat this as aggressively as possible.
Ditto.... If it's not HPV... surgery then rads and chemo is best.
Hi LB
I personally hate it when doctors who are supposed to be experts give you options like this - as if you have any chance of making an informed decision. I have no problem with the doctors stating the options provided they THEN tell you what they, the experts think.
My suggestion is if your mother doesn't have a very strong preference and you are all unsure, that you ask the doctor what he would recommend if it was his mother sitting in the chair.