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#102998 09-05-2009 04:33 AM
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Sue G Offline OP
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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




55 y/o
SCC LL Tongue 3/27/07
Part. mandibulectomy 9/2/07
Left ND 5/12/08
RT/Chemo
Rec LL Tongue 07/09
Part gloss 8/5 & 8/25
Surg 10/28/09 re mets to R neck & L jaw
RT & Chemo finished 12/22/09
PEG fitted 05/06/10
L buccal SCC 10/10
freeflap (forearm)surgery 2/28/11 L buccal and gingiva
Sue G #103003 09-05-2009 08:35 AM
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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.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #103022 09-05-2009 02:36 PM
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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


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Gabe #103030 09-05-2009 07:59 PM
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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.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
suzanne98 #103041 09-06-2009 06:08 AM
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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.

Last edited by Charm2017; 09-06-2009 06:11 AM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #103042 09-06-2009 06:34 AM
Joined: Mar 2008
Posts: 3,082
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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]


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #104713 10-06-2009 03:22 AM
Joined: May 2007
Posts: 132
Sue G Offline OP
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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


55 y/o
SCC LL Tongue 3/27/07
Part. mandibulectomy 9/2/07
Left ND 5/12/08
RT/Chemo
Rec LL Tongue 07/09
Part gloss 8/5 & 8/25
Surg 10/28/09 re mets to R neck & L jaw
RT & Chemo finished 12/22/09
PEG fitted 05/06/10
L buccal SCC 10/10
freeflap (forearm)surgery 2/28/11 L buccal and gingiva
Sue G #104716 10-06-2009 06:57 AM
Joined: Mar 2008
Posts: 3,082
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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


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #104753 10-06-2009 06:17 PM
Joined: May 2009
Posts: 1,412
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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
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
walknlite #104756 10-06-2009 08:33 PM
Joined: May 2007
Posts: 132
Sue G Offline OP
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Joined: May 2007
Posts: 132
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


55 y/o
SCC LL Tongue 3/27/07
Part. mandibulectomy 9/2/07
Left ND 5/12/08
RT/Chemo
Rec LL Tongue 07/09
Part gloss 8/5 & 8/25
Surg 10/28/09 re mets to R neck & L jaw
RT & Chemo finished 12/22/09
PEG fitted 05/06/10
L buccal SCC 10/10
freeflap (forearm)surgery 2/28/11 L buccal and gingiva
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