Bone Density / Females

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lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Bone Density / Females

Postby lakeswim » Sat Mar 28, 2020 4:11 pm

Hello, Ladies.
Someone here (maybe weisssoccermom) mentioned a while back that females should get a baseline bone density scan after radiation treatment. I forget her exact words (and can't find them) but she said many women suffer with hip fractures years after pelvic radiation treatment. I took this suggestion to my Rad Onc at my 6 month post-rad follow up visit last year and he said (like he always does) that a baseline wasn't necessary because "there are no long term side effects from radiation." I went to my PCP and he too said he didn't think a bonescan was necessary. But I was insistent and he said he could justify it because I am now post-menopausal (chemically induced from chemo). So, I went for a dexascan - thinking I was getting a baseline.

My results: At 50 yo, I walked away with an Ostoeporosis and Osteopenia diagnosis. I have been a runner/athlete all my life and eat very well and my 90 yo mom (who just passed away) didn't have osteoporosis until well into her 80's - so this isn't a lifestyle, nutrition, or genetic thing. My oncologist agreed that it is a side effect from treatment. I have yet to decide if I will go on medicine (with its own side effects) or chance it with supplements and weight training (they told me I can't build bone at my age - just maintain what I have). They highly recommend meds - b/c once you have one fracture, you have a higher chance of another. I am now a 50 yo woman who is advised to refrain from many activities I have always enjoyed as they come with a fracture risk. I was about to seek a second opinion when the virus situation hit, so I am not sure yet what I will choose.

Thank you, weissosccermom (or whomever posted this information a while back)!

Lakeswim
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

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beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Bone Density / Females

Postby beach sunrise » Sat Mar 28, 2020 6:10 pm

I had first bone scan at age 50 (a yr before cancer dx). Results were normal scan for a woman my age, minimal bone loss. When dx with cancer, rad onc told me radiation does up the risk of fractures and deteriation. It can go on for years. Here is his note when I first met him:
I explained that neoadjuvant treatment reduces local recurrences and increases probability of pathologic complete response at time of surgical resection. The rationale, risks, and potential complications of external beam radiotherapy were discussed in depth. I described the course of treatment including simulation, marking, verification, and treatment. Side effects discussed include but are not limited to; erythema and desquamation of the skin within the radiation treatment field, fatigue, diarrhea, dysuria, urinary frequency, hip fracture and a small increased risk for bowel obstruction and fistula.
I am due for a bone density scan in July, 7 months after radiation. So, we shall see the damage if any.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

User avatar
beach sunrise
Posts: 1034
Joined: Thu Mar 05, 2020 7:14 pm

Re: Bone Density / Females

Postby beach sunrise » Sat Mar 28, 2020 6:34 pm

Rad onc also told me last month when I met with him any pelvic/joint pain I might feel report it to him immediately.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Bone Density / Females

Postby Lee » Sat Mar 28, 2020 8:28 pm

It could have been me. I've been getting bone density scans for years. Per my 1st primary doctor, yes bone loss is a side effect from radiation. And I am living proof. Following treatment I was Osteopenia, and was for many years and under the age of 50. Just recently learned I'm full blown osteoporosis . I'm suppose to see another doctor regarding this, I'm going to wait until the coronavirus passes.

I've been a power walker for the past 15 yrs. Truly believe it has helped/saved me. I truly believe if I had not been walking all this time, I would probably be in a wheelchair today. Please understand, I got radiation about 16 yrs ago, about 3-4 generation ago, a lot of advancement since then. Anyway, the pain I had following radiation was real, walking slow, the norm. Getting up and those first few steps were like someone with a walker, butt minus the walker. To me radiation was the worst, made surgery and chemo a breeze. I've been told by several GYN, they have never seen such damage in a vagina as then see in mine. When I started passing blood this pass fall, I just assumed it was bladder cancer. I'm deemed a high risk for bladder cancer due to radiation.

Anyway, my bladder is fine, the bleeding they suspect is coming from the radiation damage vagina. They call it my new normal.

For those of you, who had radiation, when you are finished with treatment, find some activity that you enjoy and STICK WITH IT!! I started walking, was super slow, it was the best I could do, over time, that speed improved and that hip pain I had, slowly went away. I recommend walking and if you need a partner, rescue a dog. I got a westie, and when she got older and developed a torn knee cap, I got her a stroller.

And yes, if you got radiation, do get bone density scan every few years.

Lee
Last edited by Lee on Sat Mar 28, 2020 8:41 pm, edited 2 times in total.
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

skyeterra
Posts: 1
Joined: Fri Oct 25, 2019 9:41 am

Re: Bone Density / Females

Postby skyeterra » Tue Mar 31, 2020 11:47 am

Hi--my gyn recommended a dexa scan about 15 years ago when I turned 50 (she said I was at risk for low bone density due to wt <127 lbs.) The scan indicated I had osteopenia in my femoral neck and followup scans every 2 years showed it was gradually increasing. I resisted taking bisphosphonates because I believe they artificially create more "dense" bones by interrupting the normal remodeling of old bone and in effect create more brittle bones. Instead, I took vitamins D and K2 and increased exercise, primarily walking.

I was diagnosed with 3B rectal cancer in January 2019 and followed the TNT protocol. I asked my local radiation oncologist about the risk of radiation to my pelvic bones, and he was honest that a late side effect could be sacral insufficiency fractures. He said they would try to shield my femoral necks but it was more important to attack the cancer than worry about my bones. I finished chemorad in August and my flexsig and MRI at MSK in October showed a "near" complete clinical response. I was thrilled when my surgeon recommended W&W with close followup every 3 months.

Had my normal 2 year dexa in Dec 2019 and was not surprised that I now officially have osteoporosis in my femoral neck and osteopenia in my spine. My primary sent me to an endocrinologist who strongly recommended medication but agreed I could continue with just diet, exercise and supplements for a year. I also started taking Curcumin because some studies show a benefit to bone density and in prevention of colorectal cancer.

Unfortunately, my 3 month flexsig in January showed some ulceration in the tumor bed and biopsies indicated there were still some cancer cells. MSK acted very quickly and I had a robotic laparoscopic LAR in February. Although I was told to expect an ileostomy, I woke with only 8 little punctures in my abdomen. I was discharged 48 hours later, healed very quickly and am trying to walk at least 2 miles a day. I asked for a script for PT so I can get advice on weight bearing exercise/yoga poses that are both safe for osteoporosis and won't create a hernia, but haven't gone yet. I also postponed my scheduled 6 month checkup with my radiation onc this month, and will hopefully see him when the corona crisis is over...

kt

retiredteacher
Posts: 115
Joined: Sat Oct 21, 2017 1:34 pm

Re: Bone Density / Females

Postby retiredteacher » Sun Apr 05, 2020 3:14 pm

Yes. Followup scans indicated sacral fractures - subsequent bone scans revealed full blown osteoporosis. PCP believes due to radiation and a bicycle crash (post radiation) months previously which had not healed. Stopped dancing and took it easy a couple months, on the medication and calcium and everything seems to be fine now. There was a lingering pain I assumed was due to radiation - but was the fracture.
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

lakeswim
Posts: 229
Joined: Sat Mar 31, 2018 9:37 am

Re: Bone Density / Females

Postby lakeswim » Sun Apr 05, 2020 3:18 pm

HI - and thanks for commenting. Can you tell me about the meds. Any side effects? Heartburn? How long (years) will they have you on before your "holiday"?
Thanks,
lakeswim

retiredteacher wrote:Yes. Followup scans indicated sacral fractures - subsequent bone scans revealed full blown osteoporosis. PCP believes due to radiation and a bicycle crash (post radiation) months previously which had not healed. Stopped dancing and took it easy a couple months, on the medication and calcium and everything seems to be fine now. There was a lingering pain I assumed was due to radiation - but was the fracture.
Female - RC dgns @ 49 y
Adenocarcinoma
10-11 cm from anal verge ("large")
Stage 3a - T4N0M0
FOLFOX May -Sept 18
Capecetabine + Radiation - 28 sessions - Oct - Nov 18
Jan 19 - MRI & flex sig show tumor gone, Chest/ab CT no change
Feb 19 - MRI & flex sig show tumor gone
W&W (must travel)
.....W&W surveillance 2019,2020,2021,2022,2023....
Jan 24 - approaching 5 years this Spring with W&W surveillance to end.
*grateful*

retiredteacher
Posts: 115
Joined: Sat Oct 21, 2017 1:34 pm

Re: Bone Density / Females

Postby retiredteacher » Sun Apr 05, 2020 7:14 pm

Alendronate sodium 70 mg. Do not seem to have much of a side effect so far as I can tell. PCP retired and still getting squared away with the new doc. No one has given me a timeframe, but I am guessing about five years. One thing was obvious: the tailbone healed up and the (longish term) pain went away within about three weeks. Heartburn is hard to say, as I have a tendency toward it anyway - red wine and homemade marina I love but they sometimes do me in! For now, all good!
RC F 63 9/17
Adeno 7 cm MSS G2 PET
T3N0M0
2.5K Cap/RT x 25
"Near complete response" PET 1/18
CEA 0.5 10/17, 0.6 10/18
MRI 2/18 yT2N0 12 cm fr AV 3 cm
LAR 2/18 yT1N0M0 0/21 G1 0.3 cm
CAPEOX 3/18, reduced to 80% at cycle 3
Completed 4 cycles; stopped, gut issues, liver enzymes
CT/ colonoscopy 11/18 NED
4/19 NED Sacral fractures/osteoporosis
"Caregiver" to the Iron Man
Hubby CRC Stage 3 2004 NED, Small Cell Lung Cancer Limited 2011 NED, Non-small Cell Lung Cancer 2019 NED October 2019

Jachut
Posts: 1137
Joined: Mon Sep 26, 2011 11:16 pm
Facebook Username: hutchinson@aanet.com.au

Re: Bone Density / Females

Postby Jachut » Sat Jul 04, 2020 11:49 pm

No long term side effects from radiation? WTF? Of course there are.

It was clearly explained to me ten years ago that I would be at an increased risk of other cancers such as gynaecological cancers as a result of the radiation exposore. My Jpouch failed due to radiation damage. I have terrible bowel function now - maybe due to radiation.

And as a throway line "oh, by the way your periods might stop". I was 42. My sudden induced menopause was brutal and quite devastating. And I was on HRT for 8 years to try to protect my bones and my cardiovascular health. Nonethless, my pelvic bone density is poor for a 53 year old - I too have always lived a healthy lifestyle and done plenty of weight bearing exercise, such as running. And my elderly mother has no sign of osteoporosis either.

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Bone Density / Females

Postby Lee » Sun Jul 05, 2020 5:33 pm

Jachut wrote:And as a throway line "oh, by the way your periods might stop". I was 42 . . . r.


I was told the same thing. Started my last period just prior to my first radiation treatment, within days, my period stopped and has never returned. That was back in 2004.

Thanks to radiation, most of my rectal muscles were destroyed, I was tied to the toilet for hours anytime I ate. My only solution was not to eat until I was home for the day. Sometimes that was 3 or 4 in the afternoon. Getting that permanent colostomy at that surgery was the best decision I made. got my life back.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!


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