Previous Thread
Next Thread
Print Thread
Page 1 of 3 1 2 3
Joined: Feb 2005
Posts: 2,019
Nelie Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
Hi, I posted an introduction a while back in the introduction section. My name is Nelie. I was diagnosed with SCC of the left tongue in January, (1/19) had a selective neck dissection and partial glossectomy to remove the tumor (2.5 cm)on Feb 9. They removed about 1/3 of my tongue and 22 nodes from my neck, all of which were clean, making me T2NOMO. Two days after my tongue cancer diagnosis I went for a regularly scheduled mammogram and was told I had a suspicious looking mass that needed a stereotactic biopsy ( I think that was one of the worst weeks of my life frown ). I had that biopsy feb. 7th and found out 2 days after my tongue and neck surgery that I also had breast cancer.

The breast mass was small (1 cm) and so I chose to have a lumpectomy, sentianl node removal and radiation as treatment.

The benefits of being treated at a small hospital with one tumor board: there were not clear margins on one part of my tongue from the Feb 9th surgery but the two surgeons (ENT and breast) cooperated so I had one long day on Feb. 25 of sentinal node indentification/lumpectomy and sentinal node removal/tongue surgery instead of having to have two separate surgeries requiring general anesthesia. From this second surgery the margins for the tongue were cancer free (also my breast sentinal lymph nodes were clean making the breast cancer a nonaggressive stage I).

I was (am) being treated locally by a local ENT with experience in doing cancer surgery and at a brand new radiation medicine extension of Roswell Park cancer institiute in Buffalo that is located at our local hospital. This brand new extension had a radiation oncologist, who has since left (rumor has it was fired) who said he didn't think I needed radiation after my surgery. He apparently formed this opinion after consultation with the other radiation oncologists at Roswell Park but may not have presented all the info. in my pathology report.

Anyway, my ENT surgeon expressed some concern about this and at his urging I decided to request a second opinion. I chose Dana Farber in Boston because I am originally from that area. I went there for the second opinion on March 9th, which should have allowed enough time for the breast surgery to heal. However, the breast incision became infected almost right after surgery and, a week and 1/2 after surgery (and the day before I was heading to Boston) had to be drained. It is now being cleaned and packed daily and will probably not be healed all the way over for another three weeks or so. So the trip to Dana Farber was right after all this (tiring) and we drove through a nor'easter to get there (thank God my husband is a steady driver)!

Anyway, to make a long story short(er), the folks at Dana Farber pointed out I had certain risk factors for recuurence depsite being stage II including perineural invasion, a fairly thick tumor (1.5 cm), and something else which honestly I am forgetting right now, which indicated I should have radiation. Our new facilty has IMRT and they said with IMRT I should be able to have my parotid glands spared somewhat IF the programmer knew how to do that. They said it would really require an expert programmer to do it. They said I would need both sides of my neck radiated. They also suggested concurrent chemo but acknowledged this is not the standard for Stage II although they believed it would have definite benefits in terms of reducing reccurence.

When I came back here I met with a rad. oncologist from Roswell Park who has replaced the guy they let go, who said (after talking to dana Farber) they had re-evaluated my case at Roswell Park and agreed I needed radiation and that they could use the IMRT radiation to spare my right parotid gland. However, they are saying I don't need the right side of my neck (the right lymph nodes) radiated since no cancer was found on the left, it is very unlikely there would be cancer on the right side. They are radiating both sides of the mouth.

Also, he disagreed about the chemo recommendation. I posted about this elsewhere but the issue is that of the two phase 3 experiments testing the benefits of combined chamo and radiation versus radiation alone, only one (the one done in Europe) included people like me--high risk Stage II--the other used only Stage II and IV (they gave me copies of this research to read at Dana Farber. The articles are in the May 204 New England Journal of Medicine if anyone is interested). Anyway, the one that did use people like me didn't break out the results by stage (the trained statistician in me suspects this is because they simply lacked the statistical power to state that the effect was statistically significant even if it looked like it was there if they did comparisons for each subgroup by Stage but who knows). Apparently right now chemo with radiation is standard for high risk stage II in Europe, bsaed on this research, but is not recognized as the standard in the States according to my radiation onc. here.

Anyway, for me it may be a moot point because with a deep open incision that is slowly healing from infection, I cannot have chemo until it is healed. And it probably won't be healed by the time I start radiation (which I hope will be April 4th--I have to have two teeth pulled Tuesday and then that needs at least a week and 1/2 to heal). I am more concerend about the fact that at D-F they said I definitely need both sides of my neck radiated and they disagree about that at Roswell Park. These are both National Cancer Centers! I don't know how much of an issue I should make of this--I want to keep my parotid functioning (which they say not radiating the right side will help accomplish, though the folks at D-F clearly said there were other ways of sparing the parotid) but I don't want to go through all the trials of radiation and then find out it didn't protect me from a recurrence because they should have radiated a spot they missed.

I am also just exhausted from fighting the breast infection, the grueling drive to Boston and back, getting the breast dressing chnaged every day, and trying to get things set up for radiation (seeing the dentist, finding people to be with me when my husband has to be at work, etc.) I also will be being treated at a facility where I will be the first oral radiation patient, even though the radiation folks who are there from Roswell Park are not new to this, and they are cehcking all the calulations etc. for the radiation, there will be no nurses with handy tips about what has worked for other people.

Please --any help telling me the day to day things I might need to knwo to get through this will be of great value--anything will be of help!

Also I'd welcome anyone's thoughts on what I should do about the differing opinions (from two highly rated cancer care centers) about whether my right neck needs radiation.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Aug 2003
Posts: 1,627
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Aug 2003
Posts: 1,627
Hi Nelie,
Just bringing this to the top for other posters with information for you.
Take care,
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
Joined: Feb 2005
Posts: 2,019
Nelie Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
Thank you Minnie! I know it was a pretty long post so I'll wait hopefully for others who have the time and patience to read it.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Apr 2004
Posts: 482
"Above & Beyond" Member (300+ posts)
Offline
"Above & Beyond" Member (300+ posts)

Joined: Apr 2004
Posts: 482
Nelie, I'll try to be brief. Re: Radiating one or both sides of the neck. I would pursue both sides as this disease is very aggressive and there is often only one chance to kill it. I prefer to use every possible means to get it the first time and not leave any chance that the disease you already know about comes back because you didn't do everything possible to kill it and get it out of your body.

On the subject of day-to-day stuff, there are many tidbits of information available on this forum. Doing searches for specific questions or issues can help to answer a lot of questions. Of course, you can always ask here and someone will have an answer. Generally, radiation is cumulative in its effect and is easy in the beginning but gets more difficult as you proceed. I found the chemo to be very easy to tolerate. I had a feeding tube and unconditionally recommend it to all patients. In fact, I think it should be mandatory. However, there are a lot of patients here on this forum who didn't have a peg and made it through without one. Hydration and nutrition is critical to recovery and the peg helps that considerably. I lost my voice and the ability to swallow my own saliva due to the rad treatment. I also had oozing sores on my neck for weeks from the rad. There are some on the forum, though, that didn't have either issue. We are all different and react to the treatment differently. Try to bulk up with eating before rad/chemo as I lost 25% of my body weight (50 pounds) even with a peg.

Hopefully, this will help a little. Suggest you take it one day at a time. You can get through this. Many have and look back on the experience with a certain amount of laughter. A positive attitude is one of the best things you can bring to the party. Good luck and you will be in my thoughts.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
Joined: Feb 2005
Posts: 2,019
Nelie Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
Thank you Kirk. I am going to email the radiation oncologist from Dana Farber and ask him what the risks are, as he sees it, if they do not radiate the lymph nodes on both sides and I'm going to ask my radiation oncologist here to explain to me again why he thinks it's OK to do that. As I said, he is a very experienced radiation oncologist as well from one of the 21 cancer care centers, so I do think his informed opinion is worth something.

I also need to ask more about the PEG tube. At Dana Farber they said it was something they would only require if I was doing rad along with chemo (which it looks like I won't be able to do because I have this other surgical incision still healing from infection).

Fortunately I was already "bulked up" before I was diagnosed. It was right after the holidays and I wsa actually at my heaviest weight ever and wondering how I would ever manage to lose 40-50 pds. Heh. Little did I know. I've already lost about 25 pds since then between the initial anxiety over two cancer diagnoses, two tongue surgeries and the post surgery infection from the breast surgery. If I lose another 50 from here I'll be looking very skinny but I think I would still be a little above the technical "underweight" line. What a way to go on a diet, huh?

But I am hoping I won't lose that much--mainly because I want to recover from the radiation as quickly as possible and I'm sure that must happen faster when you keep up your hydration and nutrition up all the way through. That's why I want a PEG. The thing is, after I recover enough from this rad. treatment I still need to have 6 weeks radiation for the breast and I'm *hoping* that can happen before my fall semester starts (mid August), which means it would need to start around the first of July, which will be about 6 weeks after this rad. treatment ends.

From what I'm reading here about how long it takes people to recover, that goal may be pushing it. But I figure having those goals and an optimistic attitude might help me through--it will certainly make me more careful about trying to staying well-nourished anyway.

Thanks for the encouragement, keeping me in your thoughts, and the reminder to take it one day at a time. I'm sure I'll need that along the way too!


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Apr 2004
Posts: 156
Gold Member (100+ posts)
Offline
Gold Member (100+ posts)

Joined: Apr 2004
Posts: 156
Neli -
It's so hard to be brief with so much going on. Anyone on this board will tell you I'm long winded (as would my clients - hmmmm.....interesting coicidence. And my friends. And my co-workers.) ANYWAY. And my family.

I had SCC, Stage II on the left side of my tongue. No sign of spreading to the neck. DF and MGH both had tumor boards I saw. They both argued extensively about the neck - dissection, radiation, nothing. DF's final recco was surgery on the tongue, rads including entire neck, and chemo (can't remmeber about the neck dissection). MGH said just rads. I cried all weekend because they didn't match up.
I asked each doc to reconcile to each other, and I would recommend you do the same.
DF didn't budge b/c "when you choose a less aggressive approach and the unimaginable happens to that individual, you never forget their face." MGH reconciled up to DF - surgery, rads, and chemo if I wanted.

I didn't do chemo, but looking back I wish I had for no other reason than comfort. Knowing this feeling and that your tumor is deeper, I'd personally do chemo. I suspect DF recommended the "chemo-lite" for the tongue, which makes the cancer cells more suseptible to the rads. With the complication of an additional cancer, I could be off-base.

Because your tumor is so deep, I would also inquire about bracheytherapy. DF does the "wires", which they told me isn't as solidly tested as the seeds, in terms of dosage. The seeds "specialist" went to MGH late 03, early 04 (had worked at DF for 15 years). If you'd like me to go into more detail on the phone (you don't have to talk if it's difficult - beleive me, I'll babble on enough for both of us).

Sabrina

Joined: Apr 2004
Posts: 156
Gold Member (100+ posts)
Offline
Gold Member (100+ posts)

Joined: Apr 2004
Posts: 156
Nelie -

I just sent you a private message aside from the above, which the newcommers occassionally miss. Look at the top of your screen where it says "You have X unread private messages" and click there.

Sabrina

Joined: Feb 2005
Posts: 2,019
Nelie Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
Sabrina, Maybe I've been unclear. I already had surgery on the tongue and they got clean margins around the tumor (the second time around). They did take a lot of my tongue--about 1/3 of it--but I'm speaking pretty well with just a slight slur when I make "s" sounds (eating is another matter, I have to stick to soft or moist things though I'm seeing a speech pathologist who may be able to help me with that).I'm confused about the brachytherapy. What would they be focusing the radiation in the wires or seeds on if the tumor is excised? I thought that was just used to shrink tumors before operating.

Yes, DF recommended "chemo lite" just to make the radiation more effective but I really don't think I can have it while I have another serious surgical wound healing from an infection. I might be able to have it for the last 4 weeks of treatment , though. I am still going to ask about that. What I'm most concerned to get some agreement on is what part of my neck needs radiating. I am in Upstate NY and I really am not seeing a way I can get treatment at D-F easily and it seems as though, when there is a facility being run by Roswell park just down the road from me, I shouldn't have to be wondering if I should. I just want them to agree more!


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Apr 2004
Posts: 837
"Above & Beyond" Member (300+ posts)
Offline
"Above & Beyond" Member (300+ posts)

Joined: Apr 2004
Posts: 837
Nelie,

I had brachytherapy at the end of my radiation treatment (I had surgery before radiation, with clean margins and no node involvement). FYI -- Sabrina and I have the same radiation oncologist. In my case, I believe it was done to compress the final necessary doses into a shorter time frame and to further concentrate those doses in the areas that were felt to be most at risk.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
Joined: Nov 2002
Posts: 274
Platinum Member (200+ posts)
Offline
Platinum Member (200+ posts)

Joined: Nov 2002
Posts: 274
Nelie,

This one is kind of hard to follow because of length, but....Radiation to one side has had less than positive results for a few of our members. I am a bit surprised that, in this day and age, it is even an option. The only way to definitively determine the presence of cancer is by laboratory examination of tissue samples. It seems that you had the neck dissection on the left side and that, since they were clean, they(Roswell) are assuming the right is clean. I am having trouble with this even coming out of a radiation oncologists mouth. I understand no radiation in some cancers, but not half a job if radiation is warranted. I am no doctor, but this does not add up with what we have all seen here. As for chemo, it has been shown to reduce the risk of a reoccurrence and extend survival times. Keep in mind that I tend to believe that we overuse the word reoccurrence. It is more likely a reappearance since it was probably missed the first time through. Do yourself a big favor, be aggressive now. The second time is even less enjoyable.

Glenn

Joined: Feb 2005
Posts: 2,019
Nelie Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
Glenn, I appreciate your opinion here. I am not trying to discount your advice at all but when you say "radiation to one side has had less than positive results", I'm wondering what the circumstances were. Were these people who had larger cancers than mine perhaps? Did they have tongue cancer? Had they already had a neck dissection on the side of the cancer that showed no lymph node invovlement? I have to believe that an experienced radiation oncologist at a major cancer care center would have *some* reason for thinking radiation on one side was a reasonable thing to do.

As for the chemo, I would have it if I could. Because I am recovering from an infected lumpectomy and sentinal node removal on my breast, I don't think I can--at least not when I start radiation.

I'm sorry if this comes across as defensive. I'm feeling a bit stressed from your response. For a variety of reasons, packing up and moving to Boston for treatment seems extreme and also next to impossible to me right now. The advice one is given here to begin with is to get an opinion from a major cancer care center. I have done that (from two) and they disagree. But the folks at Roswell Park have reviewed my case twice now according to the radiation oncologist from there. I'm thinking they must have some reason for their plan.

Also, I want to take the most aggressive approach but I am constrianed by my own body and the results of fighting two cancers at once. I am well aware of the dangers of recurrence already and scared to death of them right now.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Feb 2004
Posts: 218
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Feb 2004
Posts: 218
Nelie,
For what it's worth, I had radiation focused mainly on the right side of my mouth and neck. The radiation oncologist at Mass General said that given the location of my tumor (on the very right side of my mouth between my teeth and gum) the radiation fields she was using would do the job. I pushed the radiation oncologist about this and she was convinced that her approach would be successful. After reading posts on the board, I wished in retrospect that I had both sides radiated. Time will tell, I'm 10 months post-radiation.
You might also want to ask your radiation oncologist about the possibility of combining Erbitux (a monoclonal antibody treatment, not a chemo drug) with radiation. A recent Phase III trial indicated that this is a more successful approach than radiation alone and it might not interfere with the healing from your breast cancer surgery. Best wishes for a successful treatment. - Sheldon


Dx 1/29/04, SCC, T2N0M0
Tx 2/12/04 Surgery, 4/15/04 66 Gy. radiation (36 sessions)
Dx 3/15/2016, SCC, pT1NX
Tx 3/29/16 Surgery
Joined: Jul 2003
Posts: 1,163
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Jul 2003
Posts: 1,163
Nelie,

You want to throw everything at this cancer the first go around!! It is a very unforgiving diaease. Packing up & moving to Boston is a little detail compared to what your up against.
Remember all doctors are human beings and even they don't have all the answers. It is often not caught early enough due to them not seeing much of our type of cancer. Oral cancer is rarely seen at small local hospitals. I found out after my treatment that I was the 5th oral cancer victim they saw in the last year. Doesn't
give one a lot of confidence in that realm.
I hope you make the right decisions for your situation. Best of luck. No one should have to battle cancer three times.

Danny Boy


Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.

Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06

Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
Joined: Feb 2005
Posts: 2,019
Nelie Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
well I'm feeling better after talking to the medical oncologist here. He is obviously very well-read and educated on this and said he can see why I want the concurrent chemo, agrees the New England Journal of Medicine article suggests there would be some substantail benefit in reducing risk of recurrence (he said as a rule of thumb, if stage II has half the recurrence rate of stage III and IV averaged together to begin wioth, then you can think the treatment might have half the benefit which would still mean a 5-8% lower risk of recurrence for me as he saw it. Sounds good to me) AND he said it would probably be of benefit even if I started it a week or even two weeks into the rad. therapy so there will be time for my breast to heal and then have it.

Yay!!!

God life with cancer is so bizarre. Who ever would have thought I'd be cheering about "getting to" have chemo along with radiation?

I did ask him also about what he knew about the chances of having cancer in the opposite side lymph nodes at this stage if the cancer was not in the left side ones and he said he thought it would be less than 5%--possibly just 1 or 2 %-that it's really pretty rare. But I also sent an email to the radiation oncologist I saw at D-F about this asking him what he thought the risk was. I really just want to know risks and benefits and feel I'm making an informed decision.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Aug 2003
Posts: 1,627
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Aug 2003
Posts: 1,627
I'm with Glenn on this one. I have spent hours and hours reading about oral cancer. There are few doctors that radiate only one side of the neck. One of our posters, Bob, had only one side radiated and ended up having it recur on the other side of his neck. He had to endure radiation to the other side of his neck. Bob, if I'm telling this wrong please correct me but I'm pretty sure I have my facts straight.
Think of it this way. There is NO WAY your doctor can tell you right now that the other side of your neck is cancer free. Doing radiation will take care of it as it is very small. Left alone and given time to grow, if it's present, it will be a larger cancer and more difficult to take care of.
You probably don't have any cancer in the other side of your neck, but I would not want to take that chance.
Good luck with it!
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Nelie,

I am really sorry to hear you have had so much to deal with. As I read your post what really stuck out is that you will be the first oral cancer patient receiving radiation. I remember taking my Japanese car that was sold under the Chrylser label (Conquest, aka Mitsubishi Starion). I worked out a deal to get cheaper parts and labor because I liked to autocross and the dealer in Savanah Missouri wanted to train a mechanic to work on this specific car. They only had to re-do about half of the repairs until they learned a bit more. Now, this may be a little different than your specific circumstances but my question to my ENT was tell me EXACTLY how many oral cancer patients you have had and specifically how many with base of tongue primaries. I also had MD Anderson review everything and felt I could choose either one because of the extensive experience at either facility. You may only get one opportunity to battle this beast and convenience, while important, may not be the best factor in choosing via the process of elimination. It sounds like you have already been identified as an "at risk" Stage II, whatever that means.

I wish you the best and hope you receive the absolute highest level of care possible. Fight this battle with all you have.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Nov 2002
Posts: 274
Platinum Member (200+ posts)
Offline
Platinum Member (200+ posts)

Joined: Nov 2002
Posts: 274
Nelie,

I did not want to cause you stress and, being an avid Yankee fan, the last place in the world I would want you to move to would be Boston! I just offered my thoughts on an aggressive approach and assumed, if you got it, it would be near home. On the Chemo, I should have been more clear. When physically able, you should consider it. My thinking was because of the 2 cancers they would want to give you a chemo wash. Anyway, you do seem to have matters well in hand and I'm glad you are a candidate for Chemo.

Glenn

Joined: Jan 2005
Posts: 10
Member
Offline
Member

Joined: Jan 2005
Posts: 10
Nelie,

I would recommend having the chemo and radiation together as well. Chemo gives the radiation a little extra "kick" if you will. Not only that but as it was explained to me it also helps in case there are any "escaped" cancer cells. You want to fight this hard the first time and hopefully only time. Even if you have to start it a week later do it! You have mentioned that you think that you can't do the chemo right away. Has your Dr. actually told you that?? I also highly suggest getting a peg. By the third week of radiation I had lost my tast buds and my throat was sooo sore I could barely swallow. The feeding tube was a lifesaver. It made getting thru chemo/radiation much easier. The last thing you want to suffer through daily is trying to eat. Knowing you can get some nutrition even thru the tube will make this fight a little more manageable. And just keep drinking the water! You will notice dryness. Lots of water! Good luck to. You are a very brave woman. It is very stressful having to make all these decisions and feeling like your life could be on the line. Make your choices based on what you feel comfortable with and know that if you need to ask a hundred people before deciding that's your right! Once you make your choice feel positive in your decision and FIGHT, FIGHT, FIGHT!!!
Good luck to you!
Carol

Joined: Feb 2005
Posts: 2,019
Nelie Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
Yes, I'm definitely getting a peg tube. I talked about that with the oncologist last night.

And what the docs have said is the open and draining breast incision has to heal all the way before chemo starts. This makes lots of sense as chemo slows down or stops the healing process for something like that as well as lowering my ability to fight any remaining infection in there. Last week on Wed., the breast surgeon looked at the open incision and said she thought it would need about 3-4 more weeks(it was a very deep incision)---that would bring me to 1/2 a week to a week and 1/2 into radiation as I am counting it.

Glenn, As a staunch Red Sox fan, I forgive you for being a Yankees fan. So is my husband. (There was a lot of gloating going on by *someone* in our house last fall and it wasn't him !)

Ed, I appreciate the car analogy and that the facility is new is of a lot of concern to me but I'm not sure the anaology quite fits. Since I am being treted by a radiation oncologist from Roswell Park who has seen plenty of cases of head and neck cancer, I think a better analogy is you take experienced machanics and bring them to a new shop and then take your car there. Are you the first person to get a car like that serviced there? Yes. But the mechanics aren't seeing that car for the first time--they just got their experience elsewhere.

However in car shops they don't have the equivalent of nurses I don't think. THAT is where lack of experience might make a diff. The *nurses* won't have seen this before. I'm not happy about that--but I figure it is something I can live with for the benefit of being treated near home.

Carol, thanks for the suggestions and the urging on to fight this. I'm sure I'll be coming back for more of that as I go through this.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Feb 2005
Posts: 2,019
Nelie Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
I just wanted to post a brief update on the fly to everyone here who has been so helpful. I spoke again to the radiation oncologist from Dana Farber who has been so incredibly helpful about the risks of radiating only the left side of my neck and he said the risk was too high--very much along the lines of what some of you have said here. It's not that there's a high probability that the cancer would be there and not in the nodes on the left but, if it is, it is quite possible it wouldn't show up on a CT scan and so teh only way of being sure that possibility is treated is to include that side of the enck in the radiation plan. He confirmed what I thought he had said before about how the partid can be spared, at least partially, using IMRT radiation if they have an expert programmer.

So then I called my radiation oncologist here again , he spoke to the radaition oncologist there again, and it looks like I will be able to stay here and have IMRT radiation on both sides of the neck and still have at least 50% of the parotid gland spared from radiation. The setup will be done by someone from Roswell Park who has expertise in IMRT radiation. Also I'll be having Amifostine, which I gather has helped some people here with recovering their salivary function after treatment.

So I'm feeling good about having treatment here right now but also glad I asked about the original plan. I'll be getting the CT scan that lets them do the mapping on Tusday next week, because I had two teeth pulled a couple of days ago and it takes time for the gums to heal and from there it will be a week or maybe week and 1/2 until the first day of radiation (during that time I get a PEG tube put in). By the start of rad., my breast incision, which is now still undergoing wet-to-dry packing to allow it to heal, may be close enough to healed up that I can have the first dose of chemo right on day 1 instead of having a delay......

Thank you all for your responses here. I'm sure I'll be back with lots of questions as I go through treatment.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Apr 2004
Posts: 837
"Above & Beyond" Member (300+ posts)
Offline
"Above & Beyond" Member (300+ posts)

Joined: Apr 2004
Posts: 837
Nelie,

I'm glad to hear that some of the treatment issues are getting resolved in a way that gives you more confidence -- particularly the point about radiating both sides of the neck.

Please continue to keep us posted on how you're doing.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
Joined: Feb 2005
Posts: 2,019
Nelie Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
Oh I will, Cathy! I'm sure I'll have lots of questions and will probably do my share of whining too. Now that everyone is on the same page (Dana Farber's page, which is what works for me) about what is going to happen, I am starting to wonder again how I'll hold up through all this. I am really glad this place is here.

I've been going to a breast cancer support group here and I'm getting the feeling that I'm giving some of the other women there a good basis for downward comparisons and making them feel a lot better. All of a sudden their treatment doesn't look so bad when I start talking about the things I can expect during radiation on the mouth. I'm glad it's making them feel better, but it's so nice to know this place exists and I'm in the company of people who have made it through the same treatment I'm getting.


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Apr 2004
Posts: 156
Gold Member (100+ posts)
Offline
Gold Member (100+ posts)

Joined: Apr 2004
Posts: 156
Nelie,

I apologize for getting back to you so late. I just had those few minutes this week to pop on and send you the private messages.

I, like Cathy, had my tumor excised with clean margins. Yes, rads can be used to shrink tumors before using other treatments. It's also used, as in my case, to get any cancer "dust" as the docs referred to it.

I hope this helps.

Sabrina

Joined: Feb 2005
Posts: 2,019
Nelie Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
yes, thanks Sabrina. I didn't realize it was used that way too. I think with IMRT they can do kind of the same thing and focus more of the radiation on the site where the tumor was using that. I really appreciated your messages too. I hope you'll check in and give me some encouragement as I go through this....

I met the gastroenterologist who will put in my PEG tube today. I'm not looking forward to that but they said at D-F that it was really necessary if I was doing rad. and chemo so, like getting the theeth puled, it's somwthing I just have to get through (spot where they drilled the roots of that one tooth is really nhirting today too)


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Feb 2005
Posts: 2,019
Nelie Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
Andrea, I found this and thought I'd bring it back to the top for you to read since part of it deals with the same issues about whether the right side of the neck needs radiation.

nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Feb 2005
Posts: 2,019
Nelie Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
Oh yeah, rereading this brings up another question for you, Andrea. When are you having your teeth pulled? Has that happened already? because it has to happen before they do the sim (and my RO wanted it a week before the sim because the gum swelling needed to go down).

I know all this must be completely stressing you out right now. Hang in there. Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Joined: Sep 2005
Posts: 325
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Sep 2005
Posts: 325
Thanks, Nelie.
Sounds like I have some talking to do to the docs!
If they're going to do it at all, seems like they need to do it right!
Andrea


SCC L lat tongue,Dx 9/15/05 T1N0MX L MND and L lateral hemiglossectomy 10/03/05. Recurrence 11/15/06 2nd surgery 12/04/06 hemiglossectomy 3rd surgery 01/15/07 tonsillectomy Radiation 01/25/07 to 03/08/07 3-D/CRT X 30
Joined: Feb 2005
Posts: 2,019
Nelie Offline OP
Patient Advocate (old timer, 2000 posts)
OP Offline
Patient Advocate (old timer, 2000 posts)

Joined: Feb 2005
Posts: 2,019
Andrea,

I really think you need to talk to the folks at Dana Farber central no matter what. This just runs so contrary to the advice they gave me (that both sides of the neck absolutely needed rad and IMRT would be used to spare the parotid) that I think you really should go to them directly for a second opinion. I assume when you said somewhere that "the board" had decided on the one-side of hte neck thing that that board was a local tumor board not anyone from DF in Boston?

I mean, the RO of the head and neck team in Boston wase willing to call the chief RO at another CCC to argue this needed to be done in my case so it seemed like it was something they feel pretty strongly about. I realize I had a couple of risk factors you may not have but I think we were/are probably equally at risk for having cancer cells in the opposite side of the neck. And I know it isn't a huge risk at all but do you want ANY risk of developing a more advanced cancer in the other side of your neck after going through this?

if you are going to get rad. done, you might as well do it right. And if they use IMRT they can do it right and still spare most of your salivary glands.

fwiw, though, wihtout the risk factors I can see why they are not recommending the chemo.

Good luck. Its hard challenging the authorities, even harder going above their heads to get somehting done right but rememebr this is YOUR life and your future, not theirs.

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
Page 1 of 3 1 2 3

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,264
EzJim 5,260
Brian Hill 4,918
Newest Members
Patrick Beach, Kpwin, Boost iV Miami, dcrowman, Yuka
13,362 Registered Users
Forum Statistics
Forums23
Topics18,265
Posts197,179
Members13,363
Most Online1,788
Jan 23rd, 2025
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5