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Newbie. Don't really want to join your club, but you all seem so nice.

HelenBack
Posts: 62
Joined: Jan 2013

Hello all,

I've been lurking for some time and have already learned so much from many of you. 

My husband was diagnosed a month ago, and we were headed down the path of the standard chemoradiation, then went to a tumor review board who instead suggested TORS surgery and neck dissection. When they recommended surgery it was very exciting! The docs said they thought we had a 50/50 chance of not needing radiation and if so, it would likely be a lesser amount (60 grays instead of 70). Wow! 

For the record, they seemed to think this was caught early, yet it seems that one 1.2cm lymph node might be involved, from looking at the pet scan.

But now I'm wondering if we haven't made a bad decision --  to put my husband through surgery, which is hard enough, only to have him go through rads afterward. I see so few people on this board who have had this order of treatment.

So, If anyone out there has any insights about this I'd love to hear from you. Were you given this option and decided against it? If so, why? Has anyone done the TORS first and regretted it?  

How about anyone who is soooo glad they did it?

I'm also very concerned that if the pathology finds a lot of negative features, and he needs radiation, that this surgery has postponed the start of radiation, thus giving the opportunity for the cancer to spread.  

This is all too much for me to understand, but I will keep trying.

 

Thanks,

Helen

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

I am no where near qualified to answer your question due to my own experience was not what your husbands is / will be.  But I did want to inject the comment that "if you say they believe they caught it early" and you also used the sentence "tumor board" ...well then it sounds like you are possibly at a comprehensive cancer center which is very positive and they usually do a great job.

 

I was never really explained to or given any options, in looking back I realize I was trying to figure out how to take care of my stay-at-home wife and five young children and get to my treatment center 100 miles south of our little town...so suffice to say I was not very good at asking questions, I just went with what they said...

I as stage III base of tongue HPV+ and it was suggested I have radiation and Erbitux treatments.  I got the full dose of rads and I received weekly Erbitux treatments (Erbitux is like a chemo drug but more of an EFR- it enhances the affects of the radiation on the cancer cells and helps keep the cancer from mutating / spreading)

I never had surgery, my base of tongue tumore was under 2cm and my one lymph node was cancerous (left side) and was just under 3cm (no sugery so we don't know this for certain but due to the size of the lymph node NOT being larger than 3cm they believe it was most likely still encapsulated (meaning it held the cancer in the lymph node)...

Bottom line it's very treatable / beatable but no punches held when I say it's tough thru treatments. NOt all agree with me on this, but if rads are done, be sure and look into a "peg" tube for feeding thru the stomach BEFORE treatments begin...at least ask about it.  Eating during treatments can, for some, not all, be quite tough...and your husband will need the nutrition.

Sorry too you have to join our club...but what a great bunch ...tell your husband I whispered a prayer things go as best they can for you and him ....

Best,

Tim

CivilMatt's picture
CivilMatt
Posts: 2920
Joined: May 2012

Hi Helen,

 

Welcome to the H&N forum, I am sorry you find yourself  (and husband) qualify.

 

Briefly, I was Stage IVa, SCC, BOT, HPV+ & one lymph node.  I had base of tongue surgery along with a jugular Vein dissection to remove and entangled cancerous lymph node (3.1 cm).  I had 35 rad treatments and 8 doses of Erbitux.

 

The ENT gave me the options of surgery and no rads or chemo, but even though he did a fine job of removing all visible signs of cancer there might be some residual cells and rads and chemo would be required later.  He also mentioned he had good luck with surgery followed by rads and chemo and from what he saw it was best to remove all the cancer he saw up front.

 

I asked the chemo onc why she chose Erbitux and she said she had good luck with my presentation of cancer being treated successfully.

 

As noted I chose to go with aggressive treatment in an attempt to eradicate this beast from my body for good.  If I had chosen to wait on the rads and chemo I might be ok or I might be starting rads and chemo now. I do not know.

 

Am I glad I did it?  So far I am satisfied I did it.  All tests and scans to date say it is gone.  I know it would not be gone if I had done nothing.  Besides, I finally found a group of people which understand my questions and situations (LOL).

 

Your team is still formulating your plan and I can just about guarantee it will be tailored to rid your husband of the cancer for ever.

 

Stop back by, ask anything you want.

 

Best,

 

Matt

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Helen,

I can only share my experience thus far and hopefully it helps. 

I was diagnosed Nov. 30th 2012 Tx N2b, MO Stage 4 SCC H&N. I had a tonsillectomy and biopsies done on Dec. 21st 2012. The biopsies were negative so we we were looking at an unknown primary. Initially I was going the same route as your husband. Rads and chemo, wait and see how we do and then surgery if needed. I sought a 2nd opinion at Johns Hopkins. At the consultation with the Team, they felt it best to do surgery first which would consist of a selective neck dissection to remove the tumors and TORS to do further biopsies as they saw something suspect in the back of my tongue area. A laryngoscopy would be done as well.

The reasoning behind the surgery first was to remove as much of the cancer as possible if not all of it. Also, by doing so, it can be determined if the tumors were encapsulated. If they were, it would eliminate the need for chemo. Also, by doing so, the radiation treatment would involve a lower dosage thus lessening the side effects. 

I had the surgery on Feb 7th and I'm not going to sugar coat it, it was very rough. Recovery (including some complications from post operative bleeeding due to heart medications) has been challenging to say the least. They ended up doing a bi-lateral lingual tonsillectomy using the DaVinci robot. The results gave the Team and myself a clearer picture of the extent of my cancer and game plan. The result is that they were successful in removing the cancer. Two 4+cm tumors as well as 24 additional lymph nodes were taken. The results of the biopsies were still negative so I have a true unknown primary. While that means a broader area of radiation, we're still looking at a lesser dose of rads. The tumors had broken through so chemo will be necessary, but again, a lesser dose. The best news was that they determined that the cancer is HPV related. I was a smoker but the fact that HPV is involved makes the response to treatment much better.  

Concerning TORS itself? My reaction was similar. The technology is incredible to say the least. Since I had so much done at the same time, I can't tell you if it was any less painful (as they say) but I know the precision of the robot far surpasses standard surgery and in the case of removing BOT tumors, it leaves no external scar.  

Personally, I'm glad I made the decision to go this route. For me, confidence in my Team makes all the difference. I go Monday to be fitted with the mask and get the game plan. Treatment will start in the next week or so. Since I changed course concerning treatment, it postponed things by about a month. Being that I've had cancer since at least August of 2012 (when I noticed the lump in my neck) and most likely a lot longer than that, a few weeks isn't going to make a difference. 

The bottom line is to be confident in your Team. If you're not sure, you can always seek out a 2nd opinion but from the sound of it, you're already at a comprehensive cancer center. 

Welcome to the boards and best wishes on your husband's treatment regardless of the direction you decide to go. 

"T"

 

HelenBack
Posts: 62
Joined: Jan 2013

I'm interested in what was called 4+ cm tumors. Were they really tumors since they came back negative? Benign? Or was that just the amount of tissue they chose to take? Lingual tonsls? both sides? Ouchie. And the tumors that "broke through'? Are they the lymph nodes, not encapsulated? I think I get it. And don't feel you need to aswer, I know you have more important business.

It seems I've become very curious and nosey these days (oh wait, I've always been this way, just more so, I guess)

Good Luck today with the mask. I'm sure it will be a piece of cake after what you've already endured.

Take Care,

Helen

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Helen,

The tumors were cancer ridden lymph nodes. I found out today at my appointment just how involved and aggressive they were. Several lymph nodes all grown together on the left side of my neck. They had grown right through their capsule. They were removed as well as 24 additional lymph nodes. 

I had the palatine tonsils removed Dec. 21st 2012. The PET scan showed a slight uptake on the right tonsil. I had the lingual tonsils removed on Feb. 7th along with the 24 other lymph nodes and had BOT and nasophaynx biopsies done both times as well as laryngoscopies. The two large (4+cm) tumors were cancerous but all the other samples were negative. It's an unknown primary.

I went today and had the mask made. CAT scans and an MRI were done so they can formulate the radiation treatments. I have appointments with the medical oncologist to formulate the chemo which will most likely be 6-7 infusions of cisplatin. The rads will be of varing intensity depending on location....more on the left side, less on the right side etc. 

"T"

HelenBack
Posts: 62
Joined: Jan 2013

That is one pesky primary. Well, it's about to get anhiliated. Buh-bye primary, wherever you are. (or aren't, if that's an option)

It sure sounds like you are in very capable hands.

Thanks for all the info and good luck, 

Helen

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

The cancerous lymph nodes were not the primary. Your lymph nodes are essentially the sewer trap for the cancer. So, my cancer started somewhere... BOT, throat, nasopharynx etc. Then the cancer cells spread from the primary site to the lymph nodes, thus the swelling. In my case, they haven't been able to determine where it actually started. All the biopsies of the likely places came up negative. The PET scan didn't show it anywhere else in my body. The doctor's best guess is that my body eradicated the initial primary site and what was left was the cancer cells growing in the lymph nodes on the left side of my neck. 

My surgeon seems to think he got all the cancer so the radiation and chemo are insurance policies to make sure we get any stray cancer cells that may have escpaed from the tumors. He was very confident I would be NED at the end of 7 weeks. 

"T"

 

HelenBack
Posts: 62
Joined: Jan 2013

I swear I'm catching on. Yes, you did clarify something I didn't know. I thought if no primary was found it was lurking somewhere and would be destroyed by the Chemo/Radiation. It is Waaay more awesome to think that your body fought it off already. 

Nice Work!

Helen

Duggie88's picture
Duggie88
Posts: 535
Joined: Feb 2010

 

Hi Helen

 

 

It’s been three years since I started my journey in beating stage IV throat cancer. I had a neck dissection to remove my epiglottis, part of the base of my tongue, lymph nodes, and my uvula.  All along my sugeaon made it sound like I had choices but knowing his reputation I always asked what he would do. Looking at my situation I wanted the cancer cut out ASAP and had it done 5 days before Christmas in 2009. I didn’t realize then but I do now, that was the best Christmas ever. After the surgery my surgeon told me he was sure he removed all the cancer but wanted me to do 6 weeks of radiation just as a precaution.  I drove 74 miles one way to Philadelphia everyday but it was worth every minute and mile. It won’t be a walk in the park but if I went through it trust me, anybody can do it. Certainly we all react differently to everything we have to go through to combat cancer. Just as important as the treatment is how we get ourselves through it all. A positive attitude, a support group, and having things to look forward to helped me tremendously.  Trust me the fight is well worth it. I have always stated throughout my life I am never late for anything not even the dentist for root canal and the only thing I will be late for is my funeral.  I have now lived up to that statement.

 

 

The start of a great support group is right here. I have only come to realize that after my ordeal.

 

Enjoy the day…………..I do…………every one of them

 

      Jeff

 

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Helen,

Sorry that you and your husband are about to embark on this journey, but there is the otherside of it, the done side, and very soon hopefully you will find yourselves telling others what helped you to get through it.

As far as surgery, we had those conversations... surgery, vs rads/chemo. And our doctor explained it very simply. He said that he felt that Dan's odds were higher with surgery first, because if we chose to do rads/chemo first, they would have to wait at least three months to do surgery, and even then it isn't always easy to do. He said if we did surgery first, in 3-4 weeks he could start treatment. Dan was T2N2bM2 stage 4a Tonsil. He had a small tumor in his tonsil and his neck he had 3 involved lymph nodes.

What ever you two choose, I am sure it will be the right decision. Your doctors should be able to tell you specifically why they want to do surgery first, and explain the advantanges and disadvantages to both methods.

Meanwhile, ask questions here... it helps. And don't forget along the way to take care of yourself. Prepare as much as possible, and you'll do great. It doesn't seem like it now, but you have a big job ahead of you.

Dan's 5 and 1/2 weeks post tx, and it seems like yesterday I was sitting in your shoes -- this too shall pass, and quickly!

Welcome,

Kari

lorig01
Posts: 68
Joined: Jul 2012

Hi. I was stage iii tonsil cancer. 1.5 cm with lymph node on left side.   In one surgery I had all of my teeth removed,  neck dissection and the TORS surgery to remove left tonsil.   I was in the hospital for 5 days for the recovery. I am 52 and was in pretty good shape.  The recovery was not bad, (i did take all pain medication and insisted that I would not take medication by mouth until I was home).  I was eating soft/liquid food about 3 or 4 days out.   My surgeon thought I could get away without radiation but the tumor board recommended radiation just in case. So, I did the 30 day 60 grays radiation.

I am 6 months out and I have been back to work for 2 months and am doing pretty good. I rode my bike 10 miles yesterday and I am golfing today.  So, I don't think that the surgery combo with the rads are a very difficult combo. Like everyone says everyone is different but after reading some of the chemo side effects I think it is an easier combo then chemo/radiation. 

My only complaint is that, (like many others), eating is difficult.  I am low on saliva and I have temporary teeth that I cannot use to eat. Things are getting better but I never really understood how much eating "enhances" your life.  I have been fighting depression because of the eating problems.

So I guess what I would leave you with is that the surgery/radiaion is a good combo for recovery. If you look at the MD Anderson protocol,, (the algorithm is on the web),  if your tumor is small and limited to 1 lymph node then tors and low radiaion is the treatment. Chemo will be needed if more lymph nodes involved or if the tumor is > 3cms.   So this is the latest protocol so you are not making a bad decision.

 

HelenBack
Posts: 62
Joined: Jan 2013

Your words are very reassuring. I hope you are getting the help you need for depression. I am pretty certain that may become an issue over here as well.

I don't know whee you live but many people do better when the season moves into spring. The birds, the flowers, being able to get outside more...

Good Luck,

Helen

MarineE5
Posts: 748
Joined: Dec 2005

Helen,

I can echo the sound advice given by those in the above posts. Like the others, I chose Surgery 1st and I'll explain why. I had Base of Tongue Cancer. As per my Surgeon, he offered 3 choices, 1st- Chemo and Radiation with no Surgery. 2nd- Laposcopic Surgery followed by Radaition and possible Chemo. 3rd- Neck Disection, tumor removal on base of tongue, followed by Radiation and possible Chemo.  I chose option 2 as I, like the others above, wanted the beast out of me. The laposcopic Surgery didn't work as the Surgeon told me after I woke up that once he tried to get to the tumor at the base of my tongue the instruments would not allow him to reach the tumor.

We spoke the following week and I said I wanted option 3. He removed part of my tongue and I also had a Radical Neck disection with the removal of 30 plus Lymphnodes, 2 lymphnodes involved. I was told that I had the chance of needing to feed myself thru a Peg Tube for the rest of my life and that I would have trouble speaking. At the time, he did my surgery by hand and started using the Robotic Surgery a year later.

Now, why I chose the Surgery first. My Surgeon explained it this way to me. He said that the Radiation changes the DNA in the tissue radiated and that he would have to wait a period of time after the Radiation to allow me to heal from it. Then when he were to operate, my tissue would be like working on wet toilet paper verses stronger dryer toilet paper. Those that I have talked with that had the Radiation first, then surgery mentioned that their incisions seemed to take a long time to heal., not everyone, but several. I am happy that I had the Surgery first and it gave the Radiaton team time to plan my angles of attack of the remaining areas that might be affected. I had no Chemo as the cancer didn't spread further then the 2 lymphnodes involved. The cancer Team stated that they wanted the Chemo as a safety net.

This was just over 8 years ago. Although I have some issues eating some foods, I am able to eat without the PEG tube which was removed roughly 1 1/2 months after my final Radiation treatment. I do stumble over some words, but all the people that knew me before cancer state I still sound the same. I just choose some words over others now.

My Best to Both of You and Everyone Here  

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

I think you'll find that you'll like being pulled into the loving fold of the great people here, now that you're talking rather than lurking....Everyone has given you great advice....much to think about.  My cancer was inoperatable, but I knew that many people here had surgery first, then rads and chemo.....

I also picked up on the key words "Tumor Board", so felt that you must be in a big cancer center.....a place where you can most likely trust your team....that is SO important.  There comes a time in our lives where we must trust someone else to care for us.....it sure wasn't easy for me, but I didn't know anything, so I simply had to do it and relax with that decision. 

p

Grandmax4's picture
Grandmax4
Posts: 583
Joined: Dec 2011

I went to an ent here in the nearest hometown because it felt like something was stuck in my throat...it proved to be a mass, tumor on my epiglottis..I had no idea what that even was and what it's funtion was, believe me, I learned. My ent did not feel comforable treating such a rare ( he called it) cancer so he referred me to a friend of his that is a surgeon at The James Cancer Center in Columbus,Ohio. I felt such a connection to the surgeon he recommended and complete trust..he advised I could have surgery using the de vinci robot, or radiation and chemo. I knew if the cancer had spread to my lympthnodes I faced chemo and radiation after the surgery. I opted for the surgery,November 2,2011, and was blessed, so blessed that the cancer had not spread and no radiation or chemo was needed.

I had a feeding tube down my nose for a couple months while I was taking speech and swallowing therepy...after it was removed, I was able to swallow a little...months of therepy and faithfully doing the exercises, I was able to be on a soft food diet...don't care if I ever eat mashed potatoes and gravy again :).

One full year later, I'm happy to say I can eat anything, my voice is back strong and clear..and except for an annoying feeling of mucus in my throat, I'm back to normal.

Trust your husband's team, they won't lead you wrong...ask the surgeon, if this was your brother or Dad what would you do

Treatment is brutal, but can be done..the survivors on this board and the caregivers are exceptional people, knowledgabe and willing to hold your hand as you begin this journey..peace

 

 

HelenBack
Posts: 62
Joined: Jan 2013

Thanks for all the replies. During my countless hours of lurking, I have seen you all support each other so much. It is really beautiful. What a hard road and you all have endured, so gracefully. It gives me much comfort to know everyone is here and is willing to give advice to complete strangers.

I hope, during this complicated journey, I can help others as I lean more.

As a few of you mentioned, it's true that we are lucky to have access some top medical facilities, I.e. Stanford, UCSF so, it would probably be wise of me to just trust the doctors and free up all the time I spend second-guessing them. But that's just not my nature. Our earlier doctors kinda fumbled at this a bit and and now I just don't really trust that doctors are getting the whole picture.

So I search, and wonder, and second-guess. 

These two weeks leading up to the surgery are creeping by sooooo slowly. Such an odd experience to be desperate to get to do something so terrible. Usually, I think time is moving slowly before something like a trip to Disnyland. Or Hawaii. But Surgery? Well, this is really different. 

Again, thank you 

phrannie51's picture
phrannie51
Posts: 3679
Joined: Mar 2012

diagnose your husband....but for most of us it was weeks or months between originally seeking medical advice for a lump in our necks (or some other symptom), and actually getting a diagnosis...then many more weeks of waiting to get our treatment plans in order so we could begin.  I can't think of one person who didn't think this hurry up and wait thing wasn't excrutiating....we were all chomping at the bit, to get this show on the road.  I can feel your anxiety mounting as it gets closer in such a slow way. 

If you are at a big cancer center (you mentioned Stanford and UCFS), then yes....it's time to put your faith in the Dr.'s....it's not like one Dr. is making all the calls....they team up, and throw all the knowledge they'd gained together, to come up with the best possible scenerio....they've seen thousands of cases of throat cancer....another BIG plus...The plan that they collectively put together will be the best plan.  You take care of yourself and your man....and let the treatment worries fall on the guys who know the most.  You'll have plenty on your plate as it is.

p

Laralyn's picture
Laralyn
Posts: 440
Joined: Apr 2012

I was going to recommend you get a second opinion, and I still recommend that so you feel totally comfortable with the choices you make. It never hurts to hear you're doing the right thing.

But if you're in San Francisco, I'd recommend my radiation oncologist except I don't think he's practicing right now. His name is Dr. Deepak Khuntia and he is really great. He's a recognized expert in H&N cancer, and he recommended Dr. Le at Stanford as the best in the bay area. If you haven't already been to Stanford, it might be a good place for your second opinion. I got my second opinion from Dr. Le and also saw her once for follow-up (after Dr. Khuntia left the hospital where I was treated), and she seems great.

It makes sense when you think about it: H&N cancers are not the most common cancers in the country, and mapping the radiation requires specific expertise to avoid important structures like salivary glands. If you'd like, I can ping Dr. Khuntia and see if he is practicing again anywhere in the bay area.

HelenBack
Posts: 62
Joined: Jan 2013

Hey Laralyn,

Actually, our first opinion was to go to radiation oncologist in the east bay, where we live and we were all set to start radiation, meet with a chemo guy, peg tube guy and just get rollin'. BUT someone suggested we get a second opionion at either Stanford or UCSF. Stanford called us back first and so we met with their tumor board. They suggested the TORS and neck dissection. We were so blown away by how different their plan was from the first that we also went to UCSF and they concurred with Stanford, but not as emphatically. 

Anyhoo, we decided to go with Stanford, get the surgeries first. It's more of a trek for us so we're not sure if we'd do radiation there or at our local hospital, Alta Bates Summit. I'd be interested to know how much of a difference the operator of the machine makes for cure, side effects etc. Because we'd certainly make the daily trek if it's that important. I'll look Dr Le up now, thanks.

 

You live in the area? 

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Hi Helen,

There are only a few centers in the country using the DaVinci Robot. My surgeon, Dr Jeremy Richmon, originally practiced on the West Coast (as did several members of my Team) and now he's at Johns Hopkins in Baltimore.  I experienced he same thing concerning the initial meetings and treatment plan and sought a 2nd opinion which was drastically different from the first. We're getting radiation and chemo in Baltimore and will be staying there at the Cancer Society's Hope Lodge 5 days a week, coming home on the weekends. I don't have confidence in having anything done locally after my experience. Initially I was concerned with continuing to work but from what I've learned, the chances of me being able to do so after 3-4 weeks are slim anyway. I've resigned myself to the fact that I'll be out for at least three months. So, if it's a matter of having to drive a little more, I'd recommend doing so to have your Team supervise the treatment. 

Obviously, the surgeon/operator of the robot makes a difference but there are relatively few that are trained and experienced on it but that in itself is an advantage. The surgeons operating robotics are the pioneers in the field as the technology is so new. The advantages are many. It's less invasive, more precise, there's typcally less colatoral damage etc, Again, I can't speak for the pain as I had several procedures done at the same time. There are several videos of it in action on YouTube. Concerning your doctors. After my initial experience with a local hospital, I checked out the members of my team at Johns Hopkins thoroughly. They were easily found through Google and I found several sites, reviews, both medical and patient, of each member of the team. I'm very confident after researching them. 

Again, confidence in your Team and the facility is vital to your attitude which is vital to beating the beast. 

"T" 

 

Laralyn's picture
Laralyn
Posts: 440
Joined: Apr 2012

We lived in the bay area until a couple months ago. We weren't there long, unfortuntately--we relocated for my work, and just recently relocated again to LA (again for work).

Here's the Stanford page on Dr. Le: http://med.stanford.edu/profiles/Quynh-Thu_Le/

Since you saw the tumor board at Stanford, she was probably a part of it since she is head of the radiation oncology department (I think). It would definitely be worth asking her about the differences between having radiation at Stanford versus your local hospital. There may even be a difference in technology. I read that tomotherapy can be even better than IMRT so you may want to see if either facility offers it. Dr. Le seemed like a good doctor so if there is no real difference in where you get the radiation therapy, she will probably tell you.

HobbsDoggy
Posts: 165
Joined: Feb 2013

 I had stage IV unknown primary. The doctors were sure one node was involved, but tests were not totally clear. They recommended a neck dissection to remove any nodes involved, radiation and chemo to get anything left and any microscopic hanging around. They felt since it was caught fairly eartly, was hpv positive that odds were (are) good to get it. They said treatment would be rough, but that most people came out fairly whole after time passed.

I went with what they said, the idea in their opinion was to go for a cure not just trying stuff and seeing what happened. I have yet to get my first cat scan out of treatment. Treatment and the after effects were and are stuff rough. I would do it again as I want to have the best possible chance of beating the beast. If it had spread all over body or something else like that not sure what I would do but I had trust and still do that the docs would have a really good shot at getting it and getting me to my 5 year free mark. We shall see, but fight on!

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

Hi and Welcome to the best organization you never wanted to be a part of.....I was treated at John Muir for radiation IMRT was the machine.  That was 3 years ago and they did a wonderful job.  Dr. Massullo was the radiologist and he was very good and also had a good bed side manner too.  The point is i trusted him and then went full force with the treatment.  Go with whoever you feel is right for you, then give it 110%.  I am now NED and have been for over 2.5 years, so I am very grateful to John Muir staff.  Contra Costa Oncology was my chemo provider.  They too are temendous.  I was lucky to have gotten such good care.  You will too, just do the research and then go for it.  Everything will work out fine.  As my Oncologist said" It's not a bad cancer, it's just in a bad spot." 

good luck,

Steve

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Or at least everyone tries to be helpful. I am so very sick that I can barelly respond. So I won't give advice sicnce the advice would be clouded with my brain fog. But we are all pulling together for the best ppossible result each of us can achieve. Rick.

HelenBack
Posts: 62
Joined: Jan 2013

Rick, I've read many of your posts and sorry to hear you're having a rough go of it. I'm sending warm tight hugs. 

FWIW, I wouldn't get up and move if you sat next to me on the bus. :)

Hang in there, 

Helen

Skiffin16's picture
Skiffin16
Posts: 8069
Joined: Sep 2009

All that any of us can do is trust in our MD's and their decisions for us if reasonable.

Hindsight would always be awesome, unfortunately we rarely have any "do overs"... And there is always different ways of looking at things, my MD's took the appraoch to hit it as hard as they could upfront, hopefully killing it all off without killing me in the process..., LOL.

Some take a lesser approach trying to hit it hard enough to kill the cancer, without sacrificing some collateral damage in the process.

Anyways....

Welcome to our group of survivors...

John

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