Hi All,
This is sort of good news / bad news. Was diagnosed in July with my 3rd oral cancer recurrence - the first recurrence on my tongue, though. The 'thing' popped up very quickly and painfully in July - 'it' started as a small ulcer on old scar tissue and I had that biopsied (which confirmed recurrent SCC) a week after I noticed it and following the biopsy it developed into a painful 1cm hole in my tongue. I had a partial glossectomy on the 5th August, only to be told that the margins were as small as 0.4 mm in some areas and the pathology wasn't favourable. (The surgical team thought they had a 1 to 2 cm margin but the lesion had spread much further than the MRI and visual inspection suggested)
My surgeon then referred me back to a (new) radiation oncologist as they thought radioactive implants may be the way to go given my previous radiation. This option was then discussed with a Professor who specialises in this area of radiotherapy and he decided that it was too risky (given some areas that would be indirectly affected had already received maximum grays)and the quality of life issues that may arise were too great. In consultation with my Surgeon they decided to conduct another partial glossectomy to improve and hopefully get clear margins. I had this done last week and now have a touch over half a tongue left.
Much to my surprise losing so much tongue has not been as bad as I had feared. My speech while tongue tied and unclear is improving all the time and I'm now starting to eat solid foods again. I may have to have some speech therapy but I am confident I will be back at work by the end of the month.
I have now had a total of 10 surgeries associated with this cursed disease - albeit some very minor for things such as a grommet. I don't know what I can do to stop these recurrences but am thinking of going on a 10 day retreat that teaches meditation and promotes a cancer fighting diet - macro-biotic (and I think vegetarian).
I want to take control and stop this coming back - I don't smoke, don't drink and eat a relatively healthy and balanced diet? Any suggestions?? I see my ENT on Monday for a post operative check up and will be asking him the same question. I want to win this fight but feel that if the recurrences keep coming then one of these days I won't bounce back.
Sue
You will have no problem finding lots of well meaning people touting their "superfoods" or mind-body therapies or organic pesticide free living as a way to prevent a cancer recurrence. Unfortunately, none of them have been proven to work, but it does make lots of people feel better. Perhaps the "placebo" effect of such anti-cancer beliefs can help, but some of us just have more aggressive cancers. Perhaps I am the foolish one relying upon radiation & chemo but you might ask about CyberKnife as a preventive. I was told I had maximum radiation (72 grays)after my first treatment, but this time was still able to take another 25 Grays after my surgery since CyberKnife is so focused they can literally have the beams dance around the prior areas but still zone in on the tongue. It's not widely available and usually used in brain & prostate cancer TX but my CCC is trying it on me and another Stage IV recurrence patient.
Still congratulations on being able to eat solid food, I am still on the PEG 7 months later in part due to the extra radiation so I can understand your doctor's concerns about quality of life. Another poster here EZJim has had radioactive implants or seeds and he has shared how hard it was. So while you have a very good question, if anybody had an accurate answer they would be up for a Nobel prize instead of selling their books or foods on the internet.
Sue, I am so sad to hear you are going through this again but happy to read of the good news along with the bad. It�s seems that it was picked up early which makes me worry about my quick 5 minute 3 year check on Friday!
Not having had your treatment I cannot offer any help but I have gone to a retreat. It was not specifically aimed at cancer sufferers/survivors but I would say if you get some benefit from it why not.
I am a sceptic by nature but have twice since finishing treatment gone to a retreat and would like to go at least for a week once a year.
While expensive I have no expectations other than a few days away from my normal life with a change of scenery and maybe recharging the batteries.
Enjoy and take part in everything from motivational talks, meditation, yoga, pampering etc.
Everyone is there for a reason, be it issues with health, bereavement, relationship issues�..
Best of luck and hoping you win the fight.
Gabriele
Sue, I'm sorry to hear about your 3rd time. I understand what Charm says about magic diets, I am also a strong believer in classic medicine. However, I also believe that our mood and outlook play a big part in our health. If going to the retreat will provide you with the support you need then I think you should do it. Like Charm said, if you believe it is helping I think it will. Once you feel that you have some control you will feel better.
Please let us know how you are doing.
I'm not opposed to retreats or seminars, and actually when I was first diagnosed had done extensive research and planning on one in Hawaii that featured prominent adjunctive therapy proponents of visualization, mediation etc. The idea of being surrounded by cancer survivors who understood what I went through and doing yoga, pilates, tai chi, qi-gong etc on a beautiful beach seemed just the ticket. I even posted here on OCF asking if anybody had done this or something similar but got almost no replies and none about the Hawaii site. So if you have a local place that you are comfortable with, by all means go - you certainly deserve a break.
I ended up not doing any of them however once I realized that the majority of the participants were almost all breast, prostate or skin cancer survivors with none of the same quality of life issues I had about swallowing, eating, trismus, phlegm,dry mouth etc. Plus my lovely wife/caregiver gently reminded me just how much I hate being on a group schedule and how I chafed at even the minor restrictions on cruise outings. The final factor was rereading the agenda and seeing the underlaying thread that this cancer was now to be seen as somehow life enhancing and requiring me to rise above it all. Guess I am just one of those people that one "Cancer made me better than ever" gurus denounced in Psychology Today as "Cancer is just wasted on some people". Your spirits do deserve to be lifted, I was just concerned about the vulnerability I remember all too well and the fear of recurrence and hoping for some miracle (we lit candles in what seemed like every Church in Rome last year - now that was a "retreat" that did invigorate me). It is important to eat right, exercise and keep a very positive mental attitude - but there is no easy solution nor magic diet nor any guarantees in our struggle.
Sue G
FYI, since you specifically mentioned macrobiotics, here is the Quackwatch summary of Macrobitic diets as a cancer cure/TX/recurrence preventer.
[quote]
Macrobiotics is a quasireligious philosophical system that advocates a semivegetarian diet. ("Macrobiotic" means "way of long life.") Macrobiotic diets have been promoted for maintaining general health and for preventing and "relieving" cancer and other diseases. The optimal diet is said to balance "yin" and "yang" foods. It is composed of whole grains (50 to 60% of each meal), vegetables (25 to 30% of each meal), whole beans or soybean-based products (5 to 10% of daily food), nuts and seeds (small amounts as snacks), miso soup, herbal teas, and small amounts of white meat or seafood once or twice weekly. Some macrobiotic diets contain adequate amounts of nutrients, but others do not.
Macrobiotic practitioners may base their recommendations on "pulse diagnosis" and other unscientific procedures related to Chinese medicine [44]. Pulse diagnosis supposedly involves six pulses at each wrist that correspond to twelve internal spheres of bodily function. Other diagnostic methods include "ancestral diagnosis," "astrological diagnosis," "aura and vibrational diagnosis," "environmental diagnosis" (including consideration of celestial influences" and tidal motions), and "spiritual diagnosis" (an evaluation of "atmospheric vibrational conditions" to identify spiritual influences, including "visions of the future").
Today's leading proponent is Michio Kushi, founder and president of the Kushi Institute in Brookline, Massachusetts. According to Institute publications, the macrobiotic way of life should include chewing food at least 50 times per mouthful (or until it becomes liquid), not wearing synthetic or woolen clothing next to the skin, avoiding long hot baths or showers, having large green plants in your house to enrich the oxygen content of the air, and singing a happy song every day. Kushi claims that cancer is largely due to improper diet, thinking, and way of life, and can be influenced by changing these factors. He recommends yin foods for cancers due to excess yang, and yang foods for tumors that are predominantly yin. His books contain case histories of people whose cancers have supposedly disappeared after they adopted macrobiotic eating. However, the only reports of efficacy are testimonials by patients, many of whom received responsible therapy [45]. The diet itself can cause cancer patients to undergo serious weight loss [46]. In July 2001, Kushi's wife and colleague Aveline died of cervical cancer. According to an Associated Press obituary, she underwent standard radiation treatment when the cancer was discovered. When the cancer spread to her bones and she was told that no standard treatment was available, relied on acupuncture and "Eastern" methods [47].[/quote]
Thanks for the good wishes and replies from Charm, Gabe and Suzanne!
I have booked in to do the 10 day retreat, commencing the 30th November, health permitting!
I have been battling with what my ENT calls 'occipital neuralgia' for the past 3 weeks, which has been causing stabbing pain on the left side of my head intermittently (mostly in the mornings)and have a headache in the same region the rest of the time. He is going to refer me to a neurologist because he doubts it is related to my OC problems. I'm a little more sceptical because I have a new lump at the site of my previous cancerous lymph node and am having an MRI on Friday - I can't help thinking the timing of these two events is more than coincidental. My ENT has given no indication of what treatment I will have if this lump is positive (other than to say they would do a FNA to test the lump)so I was very interested to read another thread in this forum discussing whether further surgery would be possible.
Given my previous surgery and radiation to the same area I'm certainly hoping that I will have treatment options if indeed the node (if that's what it is) is cancerous. Do you still have lymph nodes left after a neck dissection?? I'm 51, with two teenage children (aged 19 and 17) and certainly not ready to throw in the towel!
Anyway I'm probably pre-empting a result that may turn out to be negative. Now that would be a great result....but I think given my history very unlikely.
Sue
Sue
Please let us know how your retreat works out. As for neck dissections, they can be "radical" or "modified" and it varies widely on how many lymph nodes are taken out. I certainly have quite a few left after my ND. At 51 you are a relative youngster and should sail through this unlike us old folk.
Again, I hope you return rejuvenated and serene from your Nov 30th retreat.
charm
Sue, I hope you enjoy your retreat.
I also wanted to tell you that your pain sounds like mine. It has been going on for awhile, but has lessoned now. My ENT said that it was probably neurological. I also have a new lumo on my tongue, same side as last time, and the pains on that side began about the same time the lump showed up. Anyway, I will keep you in my thoughts and prayers as we walk down this path. I am supposed to be getting a scope on Friday, but I think I would rather have an MRI. We will see what happens.
Angelia,
I had a scope last week and that was all clear but because of this new lump (under my jaw) and the head pain I have now been sent for an MRI on Friday, your ENT may do the same. Good luck on Friday - I hope it's all clear. I'm glad your neuralgia is is improving - I wouldn't wish the 'stabbing' bursts of pain that I get on anyone it is excruciating when it happens - thankfully the worst of it doesn't last long!
Charm,
I had a Selective neck dissection with 39 nodes removed, in May of last year. I'm hoping that this new lump is a lymph node that has been left behind and that this time the 'thing' will be encapsulated and easily removed. Of course I shouldn't forget that old mantra - that it isn't cancer until pathology confirms it!
Sue
I got bad news yesterday!! I had an MRI and FNA both of which confirmed that my new lump was cancerous. I attended at a H & N Oncology clinic yesterday to meet with my surgeon and RO only to be told that there was in fact 3 new lumps/lesions in my jaw and neck and at this point surgery is not really an option. I have to go to the Peter MacCallum Hospital (Melbourne's CCC) next week to meet with my RO and MO to discuss my options.
I don't know what these options will be and my Surgeon keeps telling me to stay positive. My emotions are a little raw at the moment because I know the prognosis has to be poor - but I'm trying to stay positive for my family's sake. There are also practical things that I want to update and do (like my will, power of attorney etc.)but my husband keeps telling me not to talk like that.
I'd still like to go to the retreat but that won't be an option if I'm having treatments. If I'm lucky, and I have quick easily tolerated treatments I may still get to go (it starts on the 30th November) or even postpone it until the New Year.
I think I'm back at the 'why me' stage - I don't understand why I got this cancer when I never smoked and drank alcohol only very occasionally. I know that question will never be answered but I so desperately want to grow old with my husband and live to meet my grandchildren! And from the neck down I'm really healthy (mind you I have had a PET scan or chest x-ray for more than 12 months so that may not be case either).
When this all started I was T1N0M0 (tiny ulcer on left lateral tongue) and the ENT said barring being hit by the proverbial bus I was as sure a bet as was possible on living a long, healthy life.
Sue
Sue
I am so sorry to read the latest from you and don't know what to say. Hope you get some positive options out of your hospital visit next week. Will be looking for your post and hope that you can make it to the retreat if not next month then after treatment. You have been through so much these last few years you deserve some positive news.
Will be thinking about you until your next post.
Gabriele
Sue,
So sorry to hear your news. I will have you in my thoughts and will look for your upcoming posts. I hope you get some better news from your RO and MO.
Margaret
Sue
I am so sorry that you have had this news. I was treated at Peter MacCallum and live in Melbourne. Hopefully the doctors there will be able to give you some positive options next week.
If there is ANYTHING that I can do to help, please don't hesitate to ask.
Karen
Sue
This "news" sucks. It is so unfair. At times like these, who would not ask: "Why me?". At least I was Stage IV going into this mess, and told I only had 30% chance. I can't imagine how depressing it must be to start off with such a positive prognosis only to have it deteriorate so badly. I empathize more than you know with your desire to grow old (older in my case) with your spouse. That is the only thing that keeps me going. I know it is not much comfort, but at least you can still eat - at this point I would not worry much about diet etc as I think you deserve a little luxury and indulgence right about now - so get out those chocolates, and delicious fatty foods. Excellent and healthy nutrition has not worked out too well for either of us so a splurge can't hurt. I wish I had pigged out last year during my remission instead of eating tofu & vegetables & rice with zero sugar. Best wishes
charm
Dear Sue,
I am so sorry to hear this bad news. Hopefully the other Docs will come up with a good game plan to fight this recurrence. I know exactly what you mean about wanting to grow old with your husband. When my husband was first diagnosed and we found out he would have to have radiation I told the Docs that they had better guarantee me at least 30 more year's with him. We had only been married for 6 months. I think I scared them. You will be in my prayers. Hang in there and keep us updated.
Hugs,
Shelley
Oh Sue, I am so sorry. I hope your doctors come up with a good plan.
Thanks for the kind wishes from everyone. I have my appointment on Thursday at 10.00am......it's only three days away but feels like an eternity. I can't believe how quick this cancer can grow, as well as lumps on the left side of my jaw and neck, where I had radiation previously, I now have one on the right side. I'm not sure if this was one of the three lesions that showed up on the MRI, so I will ask on Thursday.
I am quite nervous about this appt. but will be glad to start moving on any treatment that they may propose. I hate the fact that every day that I have to wait makes the lumps that little bit bigger and more invasive. I'm trying to stay positive but it sure drags you down waiting...and waiting...
Good luck on Thursday. I'm be thinking of you and in the meantime - try to find SOME way to have a memorable moment each day. Whether its a 4 minute hug with someone special or a phone call to a long lost friend - do something each day until Thursday that means something to you. This cancer steals so much of our lives - try not to let it steal all of the next 3 too. Praying for you.
Donna
Great advice Donna!
Sometimes I lose sight of the things that give me pleasure and get bogged down in self pity - and fear about the future for my husband and kids. One thing that I have made a point of doing is catching up with friends that have been important to me, past and present. That is a great source of support and also changes my thought focus, at least for a while. I've got errands and shopping to do tomorrow, but plan to have a day in the country, including lunch at the beach, with my Mother and husband on Wednesday.
Sue
I have had a couple of days full of appointments and have now got a formal treatment plan. Next Wednesday I am having surgery at to remove 6 tumours from my jaw and neck(3 in and around the left jaw and 3 nodes in the right next). I had more scans today to make sure that they were all operable and Neil (my surgeon) is happy that they are. I also have no spread to the lungs (phew!).
I will be in hospital for 3 to 5 days depending on how the radiated side of my neck heals. After that I will have a couple of weeks recovering at home...then comes the worst bit. I will go to Peter MacCallum Hospital (CCC in Melbourne)as an inpatient for a stay of at least three weeks while they radiate my head and neck twice and a day and give me chemotherapy. Hopefully I will be strong enough to leave at the end of treatment. By then it will be Christmas (I know that I have taken extreme measures to have it off this year!).
After being released from Peter Mac I will recuperate at home for however long it takes. The radiation has to monitored very closely because I am being given over the recommended safe levels on the left side of my neck (due to radiation last year) and that has potential to create problems that I don't even want to contemplate at this stage! Certainly Andy, Mum, Tash and I were all teary when the Radiation Oncologist was speaking to us. But it is a calculated risk that has to be taken though if I want my life to extend into 2010 and, hopefully,well beyond.
On the whole I'm feeling much more optimistic and am looking forward to getting this started. My Surgeon was going to be in Queensland on Wednesday but he is flying back to do this surgery (only a day early but I am very grateful!).
(They decided to do the surgery first because the tumours are aggressive and the RO and MO said it takes 6 weeks before you can tell if the chemotherapy has been effective and that would be too late for me if it didn't work!)
Suddenly what they initially regarded as technically very difficult, if not impossible, surgery is now able to be done! Miracles can happen!
Sue
Sue,
I am glad you have your treatment plan and that they now think they can remove it surgically. Will be sending good vibes on their way next Wedsnesday for your surgery.
Take care,
Eileen
Sue,
Great that you now have a timetable for the upcoming treatments and that it is making you feel optimistic. Best of luck with the surgery on Wednesday for phase one. Look forward to seeing your next post when you are able.
Will be thinking about you.
{{{{hugs}}}}Gabriele
Sue, good luck on Weds and the days ahead. We'll all be thinking of you and sending you healing vibes.
Nancy
I'm sure your surgery will go well - sending you best wishes for a speedy recovery and clean pathology reports!
Donna
Thanks to all for the good wishes! I can't wait for this surgery to be done, not only to provide relief from my ear and head aches but also I feel like I have a bunch of time bombs in my jaw and neck just waiting to explode. A couple are quite palpable and appear to be getting bigger and harder by the day. My biggest fear at the moment is that one might burst. Logically I'm sure that won't happen before Wednesday - I'm just glad I don't have to wait longer than that. I'll post again when I get home.
Sue
Sue
Good luck. For what it's worth, my doctors also gave me much more than the accepted radiation doses (I'm up to a cumulative total of 97GY on my neck & hyboid bone area)with pretty much the same rationale yours are giving you about your Peter Mac stay.
Sorry that this has happened to you
charm
Sue,
Sorry to hear of your 3rd go around. I too had 3rd time in July. It was in the scare tissue as well. From what I understand this is not uncommon. I had laser surgery, with clear margins and it was the begining of SCC.
Hang in there, we are all fighting together. You are never alone. Take care.. Diane
Sending you prayers today for a successful surgery and your quick and complete recovery. Hugs
Donna
Good luck tomorrow and will be sending good vibes your way.
Take care,
Eileen
Sue,
I'm not sure if you will get to read this before your surgery, because despite how many times you told me in your emails 2 years ago, I still can't figure out the time difference.
I have been keeping up with your posts, every week or so and lost track of when your surgery was going to happen.
I have reread our emails from 2007 and can't believe how things have changed since then. Nobody deserves to go through all that you have already and still have to go. My thoughts and prayers will be with you and I am hoping that you will be posting some good news soon.
Thanks for all the good wishes everyone! I had surgery on Wednesday and came home on Friday looking a little like Frankenstein with staples on both sides of my neck. They seemed to have used the old scar line on the left and the right hand side is obviously new. I'm also very puffy and tired.
I don't think that they found any surprises although I'll get the full story when I see my Surgeon on Friday. The Surgical Registrar who did the rounds on the night following my surgery did say that operating on the left side of my neck was like digging in concrete! (because of scarring from previous radiation and surgery)
Jerry - it is amazing how much things can and do change with this disease! It's very true that even with the smallest and most innocent looking of lesions you can't ever predict where you will finish up. I'm sure that my ENT won't ever tell anyone that they are virtually assured of a cure when dealing with this
disease ever again.
Sue
Ready made halloween costume then sue.I remember calling robin "my little frankenstein",but boy was i amazed how that scar just dissappeared into the fold of his neck just a few weeks after surgery.
Well done you and happy healing.
love liz
Hi Sue, I'm not sure what to say except my thoughts are with you. You are one tough woman to have been through what you have and to be able to stay so strong. You go up in my idol ranks with the likes of ChristineB and EzJim. All 3 of you are truly inspirational.
Wendy
I am amazed that you are home after a couple of days Sue! Best of luck with the healing and the upcoming visit with the surgeon.
Totally agree with Wendy re how inspirational you CB and EJ are.
{{{xxx}}}
Thanks for the the kind words Wendy and Gabe. I really don't feel that I have done anything worthy of being defined as inspirational, I just play the hand the I have been dealt and figure that I should face all treatments and surgery with optimism. If I don't I think I may as well throw my cards in now!
In some respects I have to count myself as lucky, I have avoided grafts, trachs, PEGs and Ports - so far. I have a feeling, though, that with the intensity of my forthcoming treatment I will require a PEG or maybe a naso-gastric feeding tube. Last time around my tongue and the RHS of my mouth/neck was not included in the radiation field but this time they will be so I may not be able to maintain my nutrition as well as needed without assistance. Time will tell!
Cookey - the cut on the left side of my neck is barely visible even with the staples in - it is amazing how the surgeons manage to put their cuts in places that eventually render them almost invisible. The RHS doesn't appear to be in a crease but I think that is because of the location of the affected nodes - it should heal to be almost invisible, though. I actually haven't had my hair cut since I finshed radiation last year so it covers almost all of my neck if I don't tie it back! Keeping my hair long will also help hide the hair loss from radiation. There are definate advantages in having long hair when going through treatments!
We only had one lot of 'trick or treaters' last night (most people don't celebrate Halloween in Australia) and my husband did the honours at the front door. One big plus in being sick is I can get other people to answer the telephone and the door - normally it's 'Mum' or 'Sue' can you get that! I also don't have to cook, clean or do the washing! Suddenly my brood are able to do things for themselves and me. AMAZING.
Sue
Isn't that interesting how that works. They don't seem to do anything when we are well, but when we are sick they start doing things on their. Well, now I know my husband can do more than was he usually does. I do definitely appreciate as he is going to have to in the coming months. Anyway, glas you are home from surgery. Keep us update on how you are doing. I agree with the other. You and many others on here are inspirations to me and have helped me get the strengh and will power up to FIGHT this thing and KILL is once and for all. Continue my prayers for healing for you.