Female Pains AFTER radiation, No Doc will Listen...

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etaylor22
Posts: 8
Joined: Wed Nov 29, 2017 9:05 pm

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby etaylor22 » Sun Feb 18, 2018 9:50 pm

The pains did go away, but no one cared to figure out what that was. I am in an I hate everyone mood, and I haven't looked at further emails from my oncologist who said "I hope you're feeling better." I told her I was on an island. I said "You know what?, never mind. I see I am on my own here." AN now I'm looking for an asian doc who can make the stinky tea. How on earth am I supposed to trust her with my chemo if she can't investigate symptoms of UTI? Ans so what if it wasn't a UTI? It was certainly something - looking back it was probably the resibual of the frying of my ovaries - which when I flatly asked about menopause - I was told"These things rarely ever happen." Really? PElvic radiation. No menopause? I'm not stupid. I can open a medical journal.

Top it all off, at the last radiology appt, which actually went well - all those check boxes of symptoms...they are not symptoms that pertain to anything. They asked what kind of pain am I having? Stabbing, burning, dull??? But they don't ask where. My bum doesn't hurt. It really never did. Given rectal cancer, I guess that's awesome. Its everything else, everywhere. My bones, my muscles, my shoulder,my spine. My spine is numb from under my bra to my waist. I tell them I have a tingly numb sensation. They check the box, and we're done. They don't know if its in my bum or elsewhere. I don't understand.

I did not take antibiotice to make theese bladder strings pains go away, but they went away. Maybe it was the oscillo and the muscinex. I stopped coughing and they gradually faded three weeks after finishing radiation. This was the only thing that caused miserable pain on the last week. Other than the regular back sunburn and frying of the ovaries and such. I never feel that someone is on my side and believes me. Its always "Thats not a common side effect" or "that's not from my treatment". Yet we're supposed to report everything. Well, If I didn't have it before - its a side effect bro. ALL trust is gone.
40yo
DX: Rectal Cancer (RC)
11/1/17 Blockage, CEA 4.0, Diagnosis IIIb T4a N1 M0
11/2/17 Colostomy
12/5/17 to 1/10/18 Radiation / Xeloda
2/14/18 MRI IIIb T3 N0 M0, yPT2, Radiology report "Successful treatment for rectal cancer."
2/26/18 LAR, temp loop ileostomy, surprise appendectomy. Misery scale 8, Pain scale 3
3/1/18 Restage 2?, Path-neg margins, 19 Lymph nodes neg
4/10/18 XR Barium Enema - ileo reversal leak test
4/27/18 Reversal
In Denial...Happiness Lost

Caat55
Posts: 545
Joined: Sat Dec 23, 2017 6:01 pm

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Caat55 » Tue Feb 20, 2018 3:38 pm

I hear you. I feel your pain literally. My bum got all worked up again after surgery, it really wasn't 100% going in. I haven't worn pants, only briefly, since mid radiation.
Treat yourself well,
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

etaylor22
Posts: 8
Joined: Wed Nov 29, 2017 9:05 pm

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby etaylor22 » Fri Apr 06, 2018 5:03 pm

Took too long for my post to go up - I never followed up. Not many replies, so I guess no one else had this pain but us? Those pains eventually went away, but I don't know what it was. I'm changing my oncologist. I have no trust for her. She can't take what I feel as a crippling UTI seriously or compassionately, then I'm done with her. I wonder if the oncs read these boards. They could learn allot.

Right now I have more female problems. Sex sucks, and menopause really isn't helping. I'm angry and pissed off all the time. My happiness is gone, and I feel like I'm on an island. Hubby wants me to do chemo really bad...nut I'm not sold on a less than 7% benefit rate. What the heck kind of treatment is that?@!
40yo
DX: Rectal Cancer (RC)
11/1/17 Blockage, CEA 4.0, Diagnosis IIIb T4a N1 M0
11/2/17 Colostomy
12/5/17 to 1/10/18 Radiation / Xeloda
2/14/18 MRI IIIb T3 N0 M0, yPT2, Radiology report "Successful treatment for rectal cancer."
2/26/18 LAR, temp loop ileostomy, surprise appendectomy. Misery scale 8, Pain scale 3
3/1/18 Restage 2?, Path-neg margins, 19 Lymph nodes neg
4/10/18 XR Barium Enema - ileo reversal leak test
4/27/18 Reversal
In Denial...Happiness Lost

Caat55
Posts: 545
Joined: Sat Dec 23, 2017 6:01 pm

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Caat55 » Fri Apr 06, 2018 10:24 pm

Yes it can suck. My skin hurts for a few days afterwards. Husband is good about things but I feel awful. The hot flashes are mostly at night but a few day time ones.
It can't just be us. I blame radiologist who didn't take my concerns seriously.
I made some cannibus salve with olive oil, coconut and essential oils. Putting on sore skin. Seems to help.
S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

User avatar
Atoq
Posts: 325
Joined: Wed Oct 25, 2017 9:31 am

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Atoq » Sat Apr 07, 2018 2:15 am

Our pathology history is very similar, except that I have one metastasis in the lungs and my uterous and ovaries were removed when I had LARS surgery.

So my hormonal levels have for sure dropped, and I have hot flashes, but my happiness has not being touched yet. From your signature I see you are also having your ileostomy reversed soon.

I think more or less everybody who got through radiation at the pelvis got sored and had pain both inside and outside. This is normal since the tissues are damaged. Also it is expected that sexual life can be affected by radiation, LARS and menopause, perhaps time and taking substitutive hormons might help?

For the chemo part I agree with you, where I live they do not give adjuvant chemo if the surgery is successful. But refusing it is a huge responsability. Perhaps three months instead than six could be a compromise?

All the best

Claudia
45 year old, mother of 2
Dx rectal cancer 10.2017
At least T3N2aMX (suspect metastasis to one lung 8 mm)
Lynch negative
CEA 1.8
Neoadjuvant chemoradiotherapy Xeloda + 25x2 Gy
05.12.17 laparotomic surgery for blockage, colostomy
25.01.18 laparotomic lar, hysterectomy, ileostomy
05.03.18 core needle biopsy of lung, updated to stage IV
07.05.18 CAT scan, lung metastasis 11 mm
04.06.18 ileostomy reversal
26.06.18 wedge VATS surgery
24.08.18 CAT scan, clear
12.09.18 scope, ok. CEA 1.6
19.11.18 clear coloscopy

Caat55
Posts: 545
Joined: Sat Dec 23, 2017 6:01 pm

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Caat55 » Sun Apr 08, 2018 11:24 pm

You are almost at the end of this part of the game. Hold tight. It is awful to be experiencing all of this at once. I think only the other folks on this board can appreciate what you are experiencing.

S
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

Eleda
Posts: 197
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Eleda » Mon Apr 09, 2018 7:32 am

Sorry this is off topic but I want to catch a few girls to help with a question???
My surgons nurse just called me to talk about my surgery n 3 weeks time and Ive has,80% reduction in tumor size but because of placment 2.5cm AV, there is a new surgon who manly works on men because of small pelvis ,area,
But wabt me to talk to another surgon who wans,to do my surgery anally???? Through the rectum, for better results after reversa l,ie continance
Has anyone been through this???
ADELE
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

NHMike
Posts: 1843
Joined: Fri Jul 21, 2017 3:43 am

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby NHMike » Mon Apr 09, 2018 9:06 am

Eleda wrote:Sorry this is off topic but I want to catch a few girls to help with a question???
My surgons nurse just called me to talk about my surgery n 3 weeks time and Ive has,80% reduction in tumor size but because of placment 2.5cm AV, there is a new surgon who manly works on men because of small pelvis ,area,
But wabt me to talk to another surgon who wans,to do my surgery anally???? Through the rectum, for better results after reversa l,ie continance
Has anyone been through this???
ADELE


I have a big scar across my lower abdomen that's about six inches long horizontally and there were four other holes for sticking in tubes to assist with the surgery. So it seems like they do what they have to to work in such a small area. My tumor was over 5 cm from the AV so I guess that makes sense but I imagine that they have to move organs aside when coming in from the front of your body to get to the back. I guess that I'd read up on the technique before going to talk to him - I would guess that they would have to also come in from somewhere else but that's something that you could ask. It could make recovery easier - and I hope that you'll report back with what you find.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Eleda
Posts: 197
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Eleda » Mon Apr 09, 2018 9:26 am

Thanks mike,
Yes I think ur correct as In laparoscopy assisted, but I must meet them on the 20th, ive pre assessment clinic tomorrow so if the nurse is there ill drill her more but they dont like to say much
I also have an endo scan this week,
Evan thought the reduction is sufficient. Its still so close to sphincter muscles and not sure as to how much it penetrates the rectal wall!!!!!
I know I shouldn't b excited that they are doing their up most for best outcome, but ThIs is a slight curveball for me( need to know lol ) so im trying to talk to people instead of googling anything,

He worked in the states as my surgeons reg and also in the uk , so prob well experienced in this area but so far only coming up as general surgeon on google :cry:
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

NHMike
Posts: 1843
Joined: Fri Jul 21, 2017 3:43 am

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby NHMike » Mon Apr 09, 2018 9:32 am

Eleda wrote:Thanks mike,
Yes I think ur correct as In laparoscopy assisted, but I must meet them on the 20th, ive pre assessment clinic tomorrow so if the nurse is there ill drill her more but they dont like to say much
I also have an endo scan this week,
Evan thought the reduction is sufficient. Its still so close to sphincter muscles and not sure as to how much it penetrates the rectal wall!!!!!
I know I shouldn't b excited that they are doing their up most for best outcome, but ThIs is a slight curveball for me( need to know lol ) so im trying to talk to people instead of googling anything,

He worked in the states as my surgeons reg and also in the uk , so prob well experienced in this area but so far only coming up as general surgeon on google :cry:


I think that there are a lot of sites that don't provide the best of information but I do find that I get useful information out of peer-reviewed research papers. These can be a little difficult to read because they assume that the reader is familiar with the technical area (or has advanced degrees), but sometimes you can get people to help you interpret the papers.

It may be that a bio of your surgeon would help. Sometimes their hospitals put up detailed biographies of their doctors.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

Caat55
Posts: 545
Joined: Sat Dec 23, 2017 6:01 pm

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Caat55 » Mon Apr 09, 2018 11:27 pm

Eleda wrote:Sorry this is off topic but I want to catch a few girls to help with a question???
My surgons nurse just called me to talk about my surgery n 3 weeks time and Ive has,80% reduction in tumor size but because of placment 2.5cm AV, there is a new surgon who manly works on men because of small pelvis ,area,
But wabt me to talk to another surgon who wans,to do my surgery anally???? Through the rectum, for better results after reversa l,ie continance
Has anyone been through this???
ADELE


Its kind of unsettling when they approach you with a new plan. My tumor is about same place as Mike's just past anal verge. I have a bikini line incision and 3 holes for scopes. Go to the search bar on front of topics and search, there has to be someone who has experienced the surgery they are proposing. I just checked and there are several. Here is just one.
viewtopic.php?f=1&t=58758&p=463992&hilit=anal+incision#p463992
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

Eleda
Posts: 197
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Eleda » Mon Apr 09, 2018 11:55 pm

Thanks Catt,
Ive loooked through them but cant find any with lymphnode involvement, as its,not recomended if there is therefore, im wondering wlll they do both surgerys????

Its generally only recommended for stage 1 with no lymphs affected, even though mine has reduced significantly, I still have 6 lynphs affected ( one not shrunk)

Mike I cant find anything with my staging as its,not recommended for stage 3
Thanks ADELE
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

etaylor22
Posts: 8
Joined: Wed Nov 29, 2017 9:05 pm

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby etaylor22 » Wed Aug 01, 2018 9:59 pm

Just an update - refused additional chemo. I'm good. I'm not in for any more damage. I actually felt fine before going in - aside from the complete blockage. My everything was normal - aside from the tumor. My cea is now .78 and I'm done. No more, and I'm taking my chances. I'm not saying thats right for everyone. I'm glad that many of you go with the plan, and fare well. That wouldn't be me. I still have residual pain in my feet/toes, my brain is completely flawed, my hip / pelvic / SI joint is screwed, and yet I "tolerated it well". BS. This f'd my life over and now I am in the body of a 70 year old. I am now my mother, but worse. F this. This sucks, and this "treatment" shouldn't be called that. Its a death sentence. Quit sugar coating it. I sent my kids off for the first day of school today. I walked them. In the rain. No umbrella. I'm good with that. Want to take it away - I'm out. I'm good for now. I'm done with treatments. I'll watch the follow ups, but otherwise, I'm done.
40yo
DX: Rectal Cancer (RC)
11/1/17 Blockage, CEA 4.0, Diagnosis IIIb T4a N1 M0
11/2/17 Colostomy
12/5/17 to 1/10/18 Radiation / Xeloda
2/14/18 MRI IIIb T3 N0 M0, yPT2, Radiology report "Successful treatment for rectal cancer."
2/26/18 LAR, temp loop ileostomy, surprise appendectomy. Misery scale 8, Pain scale 3
3/1/18 Restage 2?, Path-neg margins, 19 Lymph nodes neg
4/10/18 XR Barium Enema - ileo reversal leak test
4/27/18 Reversal
In Denial...Happiness Lost

Eleda
Posts: 197
Joined: Thu Dec 28, 2017 2:28 am
Facebook Username: adele Morgan
Location: Ireland

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby Eleda » Wed Aug 01, 2018 10:40 pm

Hi there
I was Dx a month after u Dec 4th 2017
Another date I'll never forget :(
It's a tough road, but the be just had a reaction to oxaliplatin so it's been stopped before now so on 5fu only without any side effects,, my oncologist said that oxaliplatin only ups Ur chance by about 5% to which I don't understand then why a lot of older people go on it because I would not consider the benefit to outweigh the sideffects IN certain situations.
IE: If I was 70 I wouldn't take oxaliplatin ,, only 5FU

That said IM NOT,, Im 47 single parent with a young family so I'm begging them to try it again even tho the risks of fatality are strong ( worse case sinario) because I want to add every chance I can to my life for my kids,,,,

U've obviously had such a hard time with this so I can totally understand Ur frustration and mental exhaustion,, BUT uve come so far now to just give up!!!!!!!!! Shurly Ur over the WORST!!!!!!!!! now it's all about surveillance and swift action . Maybe a few days to clear Ur head and regroup??????
At the end its Ur choice,,, and u will do what's right for you and your family,,,,

It's not easy nor is it fair but no one is guaranteed anything unfortunately life is tough

Wishing u many many years for NED,,,,
Adele X
SWF, 47
Mom to 3 sons 6/8/12
Dec4th 2017 colonoscopy for minor intermittent rectal bleeding during Summer
CEA 4.4
DX T3 L3C M0 2.5/3 cm above AV.
JAN 3RD started 1650mg Zelda 2xday, with 28 radiation
Did tagamet 800mg daily and 75mg IV VIT C WEEKLY UNTIL SURGERY and
Tumor reduce by 80% 1 LN still remaining
TATME May10th, temp illeostomy
10/07/2018 CEA 3
MMR INTACT
Began FOLFOX July 10th
24/08/2018 Allergic reaction so next infusion lucovorin and 5fu
CEA 4
Second attempt with oxi aug 12th

lakeswim
Posts: 111
Joined: Sat Mar 31, 2018 9:37 am

Re: Female Pains AFTER radiation, No Doc will Listen...

Postby lakeswim » Wed Nov 28, 2018 8:57 pm

Have any women had any minor bladder issues shortly radiation is over? I feel pretty good (finished radiation a week ago), but it feels like I need to pee very often (and I do pee often). True, I am trying to drink lots of water, but not really that much more than normal. RAD ONC team said nothing about it when I asked. ONC team sent me for urine test (which turned out normal). I assume it's the inflammation in the bladder (since it's only been a week) but wanted to ask here to see if anyone noticed this and if/when it got any better. (It's not terrible but I do need to wake me up at night to pee - even if I cut off water at 6 pm.) Thanks.
50 - F (Just turned 50 so writing this # for the first time - ACK!)
Mom to 2 kids
RC - dgns March '18 at age 49 (colonoscopy aftr blood in stool)
Adenocarcinoma
10-11 cm from anal verge
Stage 3a - T4N0M0
FOLFOX May -Sept '18 (8 rounds total chemo - but stopped Oxaly after severe reactions in Round 5 or 6)
Capecetabine + Radiation - 28 sessions (Oct - Nov 2018) (Stopped Cap after 20 days due to intolerance)
Next steps.....scans in Jan will determine if W&W is an option or surgery


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