Guest guest Posted June 8, 2001 Report Share Posted June 8, 2001 hello!! i joined this group yesterday looking for a bit of a chat with people going though the same thing as me.. maybe some advice... i was diagnosed with pap.ca. in april this year after a tt. after ct and isotope scan, i've been told i need more surgery to remove 4 hotspots- 2 lymph and 2 in my thymus. this surgery is due in the next month or so but no dates yet. is it normal to wait so long for treatment (uk- treatment obviously being slightly different to us as it is nhs service not private)? i'm a teacher so find it hard to juggle normal work life with the shadow of surgery and then rad. treatment after. how has everyone else coped and how do you deal with it after treatment ... do people find it a constant worry or it there some sense of normality back in your life after treatment?? would love to hear from you, lucy (aged 24!!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2001 Report Share Posted June 8, 2001 Welcome to the group Lucy, I'm also rather new at this so I can understand how you feel. I also had my tt in April this year and was diagnosed with papillary with a follicular variant. You've certainly taken a great first step by coming to this email group. The people here are all at various stages of treatment and I have found it to be enormously comforting to here from other thyca patients who have " been there. " While everyone's experience is as unique as they are, the empathy and understanding of dealing with the day to day challenges of thyca is a common bond among us. If you haven't already, I would suggest going to the Yahoo group site at www.groups.yahoo.com/group/Thyca and read up on all of the old postings. You'll get many of your questions answered there. Also check out the ThyCa website at www.thyca.org --Chris tt 4/9/01 papillary w/ follicular var 3.8 cm day 1 of hypoland getting ready for RAI ablation Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2001 Report Share Posted June 8, 2001 Hi Lucy! Welcome to the group; I've found it a source of comfort and inspiration, and a WEALTH of information. I was diagnosed in February of 2000, at the age of 38. It was Pap thyca, and was found in two lymph nodes. The TT and lymph node removal all happened at the same time as a result of " on the spot pathology " of a lump found by Ultrasound. I had an RAI treatment a month or so later and was then regulated fairly quickly on Synthroid.... And so life got pretty " normal " for me after several months (I have a 60+ hours/week job in manufacturing and do a lot of golfing, walking, etc with my 9 year old daughter and husband). And THEN, I went hypo again for another scan, and needed a second RAI, and have been asking questions like yours: " Will I ever be just NORMAL again????!!??#?%$?#$@?#@? " And now I've been back on my meds for a couple of weeks, and have had my " after treatment scan " that looked pretty clean to me, and I think that " yes, I'll be okay, and living with this disease is pretty doable " . For me, the most important thing has been to become well-educated about the disease and then to find doctors who are willing to discuss my treatment with me and follow a protocol that " makes sense " to me based on what I've learned hear and in other reputable literature. It gives me a sense of control and an understanding of what the future may hold that is very important to my sanity and a positive outlook on life. The other really critical thing is to build a good support base of a few people you can really talk to about what's going on. You know, the mental as well as the physical stresses of our disease and it's treatment. Again, the people on this list are priceless in this regard, but I've also had to spend time with my husband and a couple of close friends at work that can really help me keep it between the cognitive ditches. My 2 cents. Hang in there, Lucy! When you have specific questions, ask them here. There are some WONDERFUL folks who know a whole bunch about thyca that will offer up help. in Missouri lisajss@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2001 Report Share Posted June 8, 2001 Hi Lucy I'm also from the UK and get treated on the NHS. Sorry to hear you have to have more surgery. As for the waiting times I'm not sure if a month or so is normal or not. I suppose it depends on how urgent they feel it is plus what hospital you go to and how busy they are. With me when I first discovered I had a lump in my throat I was told I'd have to wait 4 months for an ultrasound or go private. Of course they didn't know it was cancer then. Luckily I did go private and paid £100. I was then referred to a surgeon who said he would put me on his waiting list and would do a partial thyroidectomy in about 3 months time. I wasn't happy about the wait and wanted a fine needle biopsy so was referred to another hospital and another surgeon. Once I got the biopsy done and it came back papillary cancer I had the surgery 3 weeks later and had a total thyroidectomy. I think this is as soon as they could get me in. If you are not happy about waiting though I would make a fuss and maybe you could get in sooner. As for the radioactive iodine treatment everyone is different. I didn't have any bad effects from the treatment itself it was just having to go hypothyroid that affected me so badly. Since you are in the UK you'll have to have time off work for this as the isolation rules are alot stricter than in the USA. I was given 50mci of radioactive iodine and was kept in hospital from a Thursday morning to the following Monday. That is just my hospital though and yours may be different. Anyway where are you from? I'm from Wellingborough and I get treated at Northampton General Hospital. As for getting back to normality I think you do in the end. Last year was really rough for me. It all started in January 2000 when I discovered I had a lump, then I had surgery in March and then I had RAI treatment in June. I went hypo again this year in March for my first scan since treatment and I was very happy to get a clean scan. Things are much better now and I feel pretty normal. I go back to the hospital every 3 months for check ups and thyroglobulin tests. Let us know how you get on. Best wishes, (monica.gray@...) Wellingborough, England Age 29 Pap thyca encapsulated 2.5cm TT 03/21/00 RAI 50mci 06/15/00 T4 150mcg Tg <1 09/20/00 TSH 0.03 12/12/00 Clean Scan 04/02/01, anFrom: lucyfarnworth@... To: Thyca Sent: Friday, June 08, 2001 8:13 PM Subject: newie hello!! i joined this group yesterday looking for a bit of a chat with people going though the same thing as me.. maybe some advice... i was diagnosed with pap.ca. in april this year after a tt. after ct and isotope scan, i've been told i need more surgery to remove 4 hotspots- 2 lymph and 2 in my thymus. this surgery is due in the next month or so but no dates yet. is it normal to wait so long for treatment (uk- treatment obviously being slightly different to us as it is nhs service not private)? i'm a teacher so find it hard to juggle normal work life with the shadow of surgery and then rad. treatment after. how has everyone else coped and how do you deal with it after treatment ... do people find it a constant worry or it there some sense of normality back in your life after treatment?? would love to hear from you, lucy (aged 24!!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2001 Report Share Posted June 8, 2001 Welcome Lucy! Yes, one day your life will return to relative normalcy and this will be a distant memory. Can't they ablate the hot spots, or is this not the usual procdure in UK? Good to have you with us. My first surgery was at age 21. > find it a constant worry or it there some sense of normality back in your life after treatment?? > lucy (aged 24!!) ===== from NE Ohio 3/25/65 tt Papillary thyca w/lymph node mets Hypoparathyroidism 3 days post radical tt 3/25/82 Recurrence in neck & R chest Tx w/ 176 mCi RAI 131 hx kidney stones No scan- 5/22/01 after TSH 38.2 & Tg <0.9 & TgAb <2.0 __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2001 Report Share Posted June 9, 2001 > Thanks , re. the hotspots... i was told they could just ablate the hot spots but i was referred to a thyca specialist who said i should have surgery and rai. i'm not sure about procedure differences regarding this but i assume it is to be on the safe side. also, after reading the messages from the US it seems that surgery and rai times are really different. i was in hospital for 5 days after my tt ( due to hypoparathyro. which is still a problem).. i have also been told then the with the rai i will be in iso for about 5 days. lucy tt. 04.01 diag. pap. 04. 01. with met. 2 lymphs and thymus. hypoparathyroidism due to tt. Welcome Lucy! > Yes, one day your life will return to relative normalcy and this > will be a distant memory. > Can't they ablate the hot spots, or is this not the usual > procdure in UK? > Good to have you with us. My first surgery was at age 21. > > > find it a constant worry or it there some sense of normality > back in your life after treatment?? > > > lucy (aged 24!!) > > > ===== > from NE Ohio <><...<donali44@y...> > 3/25/65 tt Papillary thyca w/lymph node mets > Hypoparathyroidism 3 days post radical tt > 3/25/82 Recurrence in neck & R chest > Tx w/ 176 mCi RAI 131 > hx kidney stones > No scan- 5/22/01 after TSH 38.2 & Tg <0.9 & TgAb <2.0 > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 Hi Lucy, I hope that you found the answers from the people on the list helpful. I don't have much to add clinically/medically but just wanted to say " hi " to another Brit on the list. There isn't much that is specifically UKish about thyroid cancer treatment. It does vary from place to place and time to time around the UK as it does in the USA. There are some common basics about the treatment but there is also variation. One UK specific is that you should be able to get free prescriptions now. If you don't know about this already ask at your doctors surgery. They should have a form that needs a doctors signature. On the surgery/RAI question don't worry about the delay. It is not an important medical issue except it prolongs your worry time. Surgery is good for this disease. It will probably be followed by another RAI session also. If they don't offer it you should ask for it. Alan ==== We have only 2 things to worry about: That things will never get back to normal, and that they already have. -- London, England dx 9/97, tt 10/97; pap/fol with spine and rib mets; RAI(100 mCi 12/97, 244mCi 10/98); 150ug T4; -ve scan, +ve Tg; bilateral neck dissection 7/99; EBR (60 Gray) to neck 10-11/99; 5AZA trial 9/2000; Retinol trial 2/2001; Tg 238 ICQ# 67445221 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2001 Report Share Posted June 10, 2001 Hi Lucy, I hope that you found the answers from the people on the list helpful. I don't have much to add clinically/medically but just wanted to say " hi " to another Brit on the list. There isn't much that is specifically UKish about thyroid cancer treatment. It does vary from place to place and time to time around the UK as it does in the USA. There are some common basics about the treatment but there is also variation. One UK specific is that you should be able to get free prescriptions now. If you don't know about this already ask at your doctors surgery. They should have a form that needs a doctors signature. On the surgery/RAI question don't worry about the delay. It is not an important medical issue except it prolongs your worry time. Surgery is good for this disease. It will probably be followed by another RAI session also. If they don't offer it you should ask for it. Alan ==== We have only 2 things to worry about: That things will never get back to normal, and that they already have. -- London, England dx 9/97, tt 10/97; pap/fol with spine and rib mets; RAI(100 mCi 12/97, 244mCi 10/98); 150ug T4; -ve scan, +ve Tg; bilateral neck dissection 7/99; EBR (60 Gray) to neck 10-11/99; 5AZA trial 9/2000; Retinol trial 2/2001; Tg 238 ICQ# 67445221 Quote Link to comment Share on other sites More sharing options...
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