, Jul 18 2008 04:52 PM
26 replies to this topic
Posted 18 July 2008 - 04:52 PM
I am not sure if people want to do this.
Would a list of those of us "here" who have had cancer, or have children who have had or have a form of cancer be interesting.
I will start. If others want to join in, please do.
I was diagnosed with breast cancer in June 2003 when DS was 6 1/2 mths old. I had a mastectomy, but nodes were clear. Followed by 6 rounds of chemo.
During chemo I was put into menopause in an effort to save my fertility. I have come back out of that to normality.
I was not hormone receptive, am on no follow on drugs.
Edited by JRA, 18 July 2008 - 06:57 PM.
Posted 18 July 2008 - 06:48 PM
Great idea Anna.
I was diagnosed with breast cancer in June 2005. I had a lumpectomy, followed by a mastectomy. 2 nodes were diseased, so I had 6 cycles of chemo, followed by 28 treatments of radiation therapy. My cancer was hotmone receptor positive, which means it fed off oestrogen, so I was put into menopause. I have since had my ovaries removed, and am now taking calcium, vitamin D and a trial drug to stop my body producing oestrogen called exemestane. I will take this for another 2 and a half years.
Posted 18 July 2008 - 08:50 PM
Kaitlyn was diagnosed with Neuroblastoma Stage IV (At Age 3 and a half) on June the 21st 2003, N-MYC Non-Amplified, unfavourable shimada. With a tumour filling her abdomen, which had spread to her neck, knees, hips and cells in her bone marrow lining, she was placed on a tough treatment protocol (COG ANBL00P1), which consisted of 5 rounds of high dose chemo, surgery to remove as much remaining tumour as possible, two rounds of mega chemo, with Double Stem cell Transplants/rescues, followed by 10 rounds of radiation and six months of Accutane (Biotherapy). At diagnosis we were given the terrible odds of less than 20%.
Kaitlyn relapsed at the age of 7 in July 2007, 4 years to the day of her diagnosis. Doctors were somewhat confused to how her relapse presented so wanted to monitor the relapse before committing to more treatment, so far so good, Kaitlyn is wonderful happy and healthy and recently celebrated 5 years since diagnosis.
Posted 18 July 2008 - 10:04 PM
Chelsea was diagnosed with infantile ALL(acute lymphoblastic leaukemia) at the age of 9 1/2wk on
june 5th 2007. She underwent 8mnths of chemotherapy and is now 6months into maintenence chemo and also in remission.
Posted 18 July 2008 - 11:46 PM
Good idea Anna
I was diagnosed with Breast Cancer in May 2006, I had a mastectomy, auxillary node disection. I was node positive with 9/11 nodes affected.
I had chemo for 6 months followed by radiation.
In July 2007 I had a hystectomy as my cancer was hormose receptor positive and now take Armidex for 5 years to block the estrogen, the hyterectomy removed my ovaries and out me into menopause. (Nicole and I are very similar in our treatment) I also take Calcium and vitamin D
I have just gone to 6 monthly checks and all is good so far. I am currently on a trial seeing whether giving a women testorone eases the side effects of the Armidex drug and the forcing into menopause.
Posted 19 July 2008 - 11:45 AM
I found a thickening in my left breast on 11 May 2008 (Mother's Day) ~ went to the Dr on the 12th (my birthday) ~ within a week I had mammogram, ultra sound and core biopsy and breast cancer diagnosis.
Had mastectomy and sentinel node biopsy on 4 June, node was positive for cancer so had axillary clearance on 2 July ~ No further nodes involved. Cancer is hormone positive but HER2 negative.
Start Chemo 3 cycles of FEC on 31 July then 3 x Docetaxel
Posted 19 July 2008 - 12:29 PM
Ray was diagnosed with Alveolar Rhabdomyosarcoma in his right thigh in Septemeber 2006 when he was 16 months old. He had surgery initially to remove the bulk of the tumour then 10 months of chemotherapy and 5 weeks of radiotherapy directly to the thigh.
He has been off treatment for 12 months now & goes in 3 monthly for an MRI on his leg to checek it is still gone & a chest x-ray to look for metastic disease.
He is doing really well & apart from loss of muscle mass, seems to have no problems with his leg so far.
Posted 19 July 2008 - 05:34 PM
I was diagnosed with Bowel cancer in November 2007. I had 6hrs of surgery to remove 2/3 of my large bowel and my appendix (just in case) along with 43 lymph nodes. out of the nodes 3 were diseased.
In Janurary 08 i commenced 6 months of chemo. I completed this at the beginning of July.
Throughout my Chemo i was put into menopause aswell in an attempt to save my fertility. I have only just gone off these tablets (Primolut N) now and will have to wait until November to check hormone levels. All going well the oncologist says we are right to TTC then.
A recent CT scan has shown no signs of cancer in my body. I have another check up in November.
Posted 21 July 2008 - 05:42 PM
Thanks all for the replies, I have asked this to be pinned for further reference.
Others please feel free to contribute.
Posted 23 August 2008 - 05:52 PM
I've had melanoma, level 3. Some fairly big surgery was the only treatment and they are reasonably confident all was removed and it hadn't spread (fingers crossed). I have checks of the site and lymph nodes every 6-12 months.
Edited by andieinvic, 09 December 2008 - 09:13 PM.
Posted 07 September 2008 - 04:01 PM
I am new to this.
Was diagnosed with grade 4 cervical cancer on 26th August after a cone biopsy.
Will find out tomorrow what exactly will happen,but it looks like a hystorectomy is on the cards as the tumour has gone past the pelvic area.They are talking laser but will weigh up options tomorrow.
Have no idea so far what will happen after this but tomorrow i am sure they will tell me.Have 100 qs to ask OB.
Waiting on results for my DS 3.5 who has had a blood test to see if he has Lymphoblastic Luekemia.
So we are on an emotional roller coaster ride ATM.
Edited by *Pru-Bear*, 07 September 2008 - 04:05 PM.
Posted 06 October 2008 - 01:45 PM
This is a lovely idea, Anna.
- I was diagnosed with breast cancer in July 2005. I was 32 and my DD was 8 months old.
- I had been complaining of a sore hip for awhile, but all xrays came back clear.
- I was sent to Melbourne for a biopsy after a tumour was finally discovered on my right hip
- I received a diagnosis of breast cancer after a barrage of tests, including a MRI. The tumour on my hip was a secondary cancer.
- I had noticed a breast lump and as I was breastfeeding, was sent for a biopsy, which came back clear. I also had an ultrasound and was told that the mass in my R breast was "consistent with breastfeeding".
- A few days after my diagnosis, I underwent a partial hip replacement, during which the tumour was removed and a prosthetic bone inserted.
- I was in Melbourne for three weeks in the Orthopaedic ward and underwent rehabilitation before being sent home via air ambulance.
- I'm not sure when I found out, but I also had secondaries on my liver and spine.
- I started chemotherapy in November 2005 and had 8 rounds, during which I lost my hair, but that is the only side-effect I had
- My chemo worked really well, in that it shrunk my breast lump, to a barely-discernible lump that an ultrasound couldn't locate
- After chemo, my liver also proved to be disease-free
- My spine hasn't changed since my initial diagnosis. I wouldn't even think there was a tumour there if I didn't know any better
- I have an infusion every 12 weeks of Zometa, an implant every 4 weeks of Zoladex, and take Aromasin tablets daily
- Another secondary breast cancer started growing in 2008, but I changed tablets from Arimidex to Aromasin and have had no problems since
- I go back to Melbourne in November for my next checkup.
- I think that's all!!
Posted 06 October 2008 - 03:27 PM
I have had a melanoma, I also have a condition called dysplastic nevi syndrome which means I have a lot of moles and a lot of them are "unusual looking". I have also had another 6 or so removed which have been in the precancerous/changing cells stage.
My DD was born with a germ cell tumor called a sacrococcygeal teratoma. We didn't know she had it until she was around 5 weeks old when the lump she had at her tailbone was growing. After a few tests she had it successfully removed at 9 weeks of age.
The tumor did contain a small amount of cancerous cells, that small that it was not fully classed as cancerous.
She had a successful removal with no more treatment and has successfully passed her three year mark with no other problems (the operation had not caused any problems with her bowel or bladder or movement ect)
She has had another tumor removed from her forehead which ended up being a hemangioma.
Posted 20 October 2008 - 10:03 PM
I am Felicitie my son Rhys was diagnosed with ALL (Acute Lymphoblastic Leukaemia) on the 2nd May 2001 at the tender age of 2years old. he finished treatment in 2003 and is 5 years off treatment. He has IgG deficiency and is on Human Immunoglobulin subcut infusions twice aweek. but other than that he is great. today is his 10th birthday I am so proud of him he is my hero
Edited by flickfrog, 20 October 2008 - 10:04 PM.
Posted 04 November 2008 - 11:48 PM
I was diagnosed with Early Breast Cancer in Nov 2006 at the age of 31years old ( while breast feeding my daughter, which she was about 17mths old)
All nodes were clear of cancer and surgical margins were also clear too.
I received 4 cycles of chemo, 6wks of radio and undergoing hormonal treatment because my cancer was estrogen and progesterone positive.
I have been taking tamoxifen since June 2007 and zoladex since October 2007 and counting down the days.
I am in remission now for 2years and looking forward to a healthier and brighter future!
Posted 17 April 2009 - 05:07 PM
Hi My name is Belinda and my DD was diagnosed with ALL (Acute Lymphoblastic Leukemia) on April the 13th 2008 at age 19 months. I also found out i was pregnant with my second child the very same week, my now gorgeous lil boy Lucas. Natalia has now finished her 9 months of intense chemo and will remain on chemo tablets for another 12 months. She has remained in remission and is a happy and cheeky 2 and a half year old. We are so proud of her courage and are looking forward to her future very much.
Posted 19 April 2009 - 10:36 AM
I too have recently been diagnosed with Brease Cancer (March 2009). I am 39, have Stage 1, Grade 3 breast cancer. The lump was 10mm, surgical margins and 2 nodes clear.
Is it OK if I can discuss in further detail how they determined what treatment they decided for you?
Posted 29 May 2009 - 11:51 AM
My Daughter was diagnosed on the 27th march with a Wilms Tumor (Nephroblastoma stage 3) this is a kidney tumor in young children the tumor was 19cm before chemo & shrunk to 13 cm by removal
6 weeks of chemo then they removed the tumor but lymph nodes could not be removed without disasterous results
so waiting on the biopsy results, we are back on chemo now for 27 weeks to go plus 4 weeks straight 5 days a week radiation starting on the 10th june. will have follow up CT scans & US to make sure things are not growing etc.
Posted 29 December 2009 - 07:09 AM
6th December 2009 was the 5th Anniversary of my surgery. I had Cervical Cancer...a radical Hysterectomy, but didn't need any 'follow on' chemical treatments.
I have to say that "period of time" -diagnosis & surgery - was much more DIFFICULT for my loved ones than it was for me...I was so focused on the 'doing' and they had more time to think and worry than I.
Posted 27 March 2010 - 03:23 AM
it is a crazy disease huh? Big support from me for your courage. It certainly has its moments. My ride has been very much like a rollercoater!
- I was diagnosed on January 15, 2008 11 days before my 39th birthday. ER+ and PR+, Her 2-.
- I had rib pain a couple of months leading up to diagnosis which turned out to be secondary with other major bone involvement, hips, spine, thighs
- Currently on Xeloda (oral chemo) and Bondronat (bone strengthener), Zoladex (anti-hormone)
- My soft tissue remains clear as of about 4 weeks ago
- I have been on a range of treatments. Some have been more effective than others.
I can go into more detail if anyone is interested. Can also PM me.
Overall I am grateful for the life I have and the amazing family and friends I am blessed with! What will be will be!
Posted 27 March 2010 - 11:44 AM
I was Dx in August 09, had a double mastectomy with expanders for reconstuction. In October I had TAH+BSO, and now a a mean menapousal b#$h.
My body unfortunatelly rejected the expanders, so in feb I went again, and this time they did the full on mastectomy....everything gone.
No nodes seemed to be involved, and having had mastectomy, I don't need radio therapy......all I have to do is relax and enjoy life, which is a bit hard, as I got infection in both of the wounds. One we manged to keep closed, but the other one just opened up about5-6 cm in diameter. So atm I am carrying a sucker up puss machene (VAC dressing) anf hoprfully the infection will stay at bay and it will close up nicely.
Posted 04 December 2010 - 12:53 AM
Hello Survivors, Sufferers and parents of little battlers!!!!
Putting my hand up for the role call:
At 21, in 2004 after my very first pap-smear (too shy and scared of anyone looking down there before - how laughable, I can no longer count the doctors and med students now!) I was diagnosed with cervical cancer. (Handed a fax, with only three words I recognised - carcinoma and urgent biopsy. Still to this day I wonder if that was the worst, or the best way, to be told).
Punch Biopsy and colposcopy confirmed it (although "urgent" was a two week public hospital system wait!). HPV DNA test has always been negative. I'm just a rare freak that had a cancer I shouldn't have been able to develop for another 10 years!
Due to my age, and my childless state, and the fact the lesion looked manageable, Diathermy was the proposed treatment. Performed under local only, with a doctor saying I couldnt feel a thing while I was crying out in pain.
They didn't get it all, back for another treatment in 8 weeks.
Under local and a sedative this time, Diathermy #2. At home that night, got up to make myself a cup of tea, and thought the local had been too strong - a rush of warm liquid - I thought I had wet my pants! But it was blood. I was haemorrhaging.
Into emergency, a "pack" placed in - they said they'd check on it in 24 hours. In the 20 minutes of filling out the admissions paperwork on the ward, I had bled through the pack and was making a lovely pool of blood on the bed. Was certain I was going to die that night. Transfusion and two weeks in hospital....
....Only to find they didnt get it all.
Back to the drawing board - Was told that Chemo and Radio would give me the all clear in the shortest amount of time with the minimum amount of risk (considering my "very vascular" cervix.) Radio to me was about as devestating as a radical hysterectomy.
Chemo and Surgery was my other option. I didn't have a great track record with surgery thus far, but I do desperately want to be a mum.
Onto the Chemo Limo.... I was lucky in terms of side effects - hair loss was not too extensive (although it's still very thin).
It was probably more unpleasant for those around me than it was for me...I still remember the very betrayed look in my nephew's face (2 at the time) when he came to visit me at my worst.... his face read "No, you're not allowed to be sick, you're meant to be there for me always."
My journey ended with a cone biopsy (Used to treat as well as diagnose CC) and another haemorrhage. This time they kept me packed from the start.
I was feeling weak, and BP was ultra low following the surgery. They let me out after a week. Two days later, I had excriciating cramps, and the need to push.....and out came the clots of blood the pack had forced to pool in my uterus instead of flowing out. golf ball first, then tennis ball. Back to hospital :-) IV antibiotics for 10 days.
Treatment concluded in 06.
Every Punch B, HPV DNA + Colposcopy has been clear ever since!
In December 2008, I graduated to annual pap smears! After this one, I get to go and be "normal" every 2 years!
Still TTC #1, with a few heartbreaks along the way. I was expecting problems later on in prgnancy with my incompetent remains of a cervix - ready for stitches and bedrest, but I wasnt ready for things to go wrong early on...but, feeling very hopeful and positive - it's Christmas after all!
Posted 12 October 2011 - 11:07 PM
Can I join?
I was diagnosed with triple negative breast cancer in September 2010.
I had a lumpectomy and sentinal node biopsy in September 2010, nodes all clear. I then had a axillary clearance as precaution and had 1/16 nodes. I started chemotherapy and halfway through found another lump. I then had to have a mastectomy and start chemo all over again. I finished chemo mid June 2011 and then did 30 sessions of radiation. I finished treatment August 23rd 2011
Now I just hope I can stay cancer free!!! Fingers crossed!!!
If you want any more info just PM me
Posted 28 November 2011 - 11:12 PM
That is the most beautiful sig I've ever seen - and as an almost original EB'er, I've seen a few.
Uh, I don't think I've ever done an EB roll call, since I've been here forever in some shape or form (ok - I did a few years under a pseudonym as a moderator, hence the inordinately low post count). When my son was diagnosed with autism in 2004, I slipped away quietly.
In 2005, I had a 7cm keratocystic odontogenic tumour removed from my sinus cavity, which while sounds scary, was benign, but resulted in 18 months of surgeries, battling 'super-bugs' picked up in operating theatres and neuralgia in my face.
22 days after my doctors announced that I was healthy, my husband was diagnosed with advanced multiple myeloma. After 9 cycles of chemo, 2 stem cell transplants and a disastrous experience with Thalidomide, Wayne stabilised at a serum M count between 11 and 15.
4 days ago, his count shot up to 22.
We're back into active disease.
Posted 29 November 2011 - 09:52 AM
Oh gutted for you L. Just gutted.
D....longtime stalker of your posts. LOL
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