Venting !!

Please feel free to read, share your thoughts, your stories and connect with others!
Lydia666
Posts: 662
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Venting !!

Postby Lydia666 » Mon Feb 13, 2017 8:30 pm

Hey friends,
I feel pretty pissed about the effects of radiations i had for colorectal cancer. Sex is painful and menaupose at 40 sucks. And if that's not enough, i am having a double mastectomy in less than 2 weeks to prevent future cancers, after they found ductal carcinoma in situ on the right breast. I had a lumpectomy initially but breast cancer gets treated agressively and despite it being stage 0, they wanted to give me radiations too, so i decided to have the mastectomy instead and avoid anymore crap, although the mastectomy sounds pretty awful.

For the women who had pelvic radiations, has the vaginal stenosis improved with time?

I am starting to feel all chopped up and miserable, and i know it's all in balance with being alive but any chance of sex getting better? :)
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
July 2016- ileo reversal
August 2016- DCIS
Feb 24,2017- prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Mom to 4 & 7 yrs kids (6 mo. & 3.5 yrs at diagnosis in June 2015)

Lee
Posts: 5666
Joined: Sun Apr 16, 2006 4:09 pm

Re: Venting !!

Postby Lee » Mon Feb 13, 2017 8:48 pm

Lydia666 wrote:
For the women who had pelvic radiations, has the vaginal stenosis improved with time?



NO !!!

So sorry this is happening to you. I am fortunate in that I did not develop breast cancer, butt I was warned of possibility. Thus I get mamo every year.

I'm coming up on 13 years since diagnoses, had radiation, and still use a dilator today. Guess I will always use one. For me radiation was the WORST. Made surgery and chemo much easier. And we will not go into what radiation has done to my hip area.

2nd opinions are always a good idea, butt for me and what I've dealt with, I think you are making the right decision. I would advise if possible, talk to other women who took the radiation route. From what I've been told by a few people dealing with breast cancer and radiation, radiation was not that bad. Maybe improvement in technology, I don't know. Butt see if you can talk to other people.

(((Lydia))), so sorry you are dealing with this.

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 - 10 years and counting!

User avatar
CRguy
Posts: 9591
Joined: Sun Feb 10, 2008 6:00 pm

Re: Venting !!

Postby CRguy » Mon Feb 13, 2017 9:15 pm

Lydia666 wrote:For the women who had pelvic radiations, has the vaginal stenosis improved with time?


Sucknitude on your news my friend, sorry you are having more challenges
.... BUTT please also read the posts SEARCH
and maybe PM weisssoccermom ( Jaynee) who has been very pro-active in educating women
to advocate for themselves in preventing / managing radiation side effects. She will be a great resource for you.

Harmony and best wishes
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Re: Venting !!

Postby AnnClare » Tue Feb 14, 2017 9:29 am

Oh honey, I hear you!

I'm only 42 and the pelvic radiation (which fried my ovaries and thus they were removed during my LAR) led to early menopause for me too. I use a dilator, but sex is nothing like it was. It is painful and something I do for my husband (though he is VERY understanding and never pressures me or even initiates it.) The anger & sadness I feel over the loss of yet another aspect of my pre-cancer life is something I can't begin to put into words. This effing disease robs us of SO many things.

I wish I had answers for you, or at least words of encouragement, but sadly I'm in the same miserable boat. :(
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

Lee
Posts: 5666
Joined: Sun Apr 16, 2006 4:09 pm

Re: Venting !!

Postby Lee » Tue Feb 14, 2017 9:43 am

AnnClare wrote:. . .the pelvic radiation (which fried my ovaries and thus they were removed during my LAR) led to early menopause for me too. . .


Yep, I started my last period a few days prior to starting radiation. That period would be cut short and it was my very last period. My surgeon also removed my fried ovaries during my surgery too.

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 - 10 years and counting!

LB10
Posts: 100
Joined: Tue Mar 17, 2015 5:25 pm

Re: Venting !!

Postby LB10 » Tue Feb 14, 2017 9:49 am

AnnClare wrote:sex is nothing like it was. It is painful and something I do for my husband (though he is VERY understanding and never pressures me or even initiates it.) The anger & sadness I feel over the loss of yet another aspect of my pre-cancer life is something I can't begin to put into w


I can so relate to this. My husband doesn't know the degree of my discomfort. If he did, he would never want to put me through it. I endure it because I won't be robbed of the intamacy that sex brings to a relationship but I do fear how long I can keep it up.

Some things that have helped are local estrogen in the form of vagifem tablets and estrace cream used 2-3 x week. Also, coconut oil as lubricant. With the breast cancer, estrogen may not be a safe option for you, only your doctor could say for sure but it is worth asking.

I'm sorry for all of us. Wishing you all the best outcomes.
Stage III Rectal cancer
Dx 3/14
4/14-7/14 8 rounds Folfox
8/14-9/14 Radiation/Xeloda
1/15 APR colostomy
46 yo wife & mom

Nelbel
Posts: 37
Joined: Thu Nov 17, 2016 11:02 pm

Re: Venting !!

Postby Nelbel » Tue Feb 14, 2017 10:41 am

I'm so sorry to hear your news.

Having had two melanomas (in citu fortunately), precancerous cells on my cervix and now rectal cancer, I'm sort of waiting to see where it will hit next. I just had a pap smear (painful even with the baby tool) and fortunately that came back normal. I'm scared to go get my mammogram (will be my second), thinking I should wait until after our family vacation.

I was not at all expecting this long term damage after all was said and done. My radiation oncologist (my least favorite of all my doctors) made it sound like things would be fine after (other than early menopause). I felt like I could learn to deal with that. Heck, I'd have to in 10 years or so anyway. But, the damage to my vagina was shocking. My midwife suggested a dilator but honestly I haven't gotten around to it (still trying to deal with the uncomfortable effects of clustering that makes sex even further from my mind - thank you radiation or resection? Probably both). I feel so bad for my husband, we are too young for this. I know there are other ways to be intimate but will that really be enough for him? Will a dilator even help much at this point (Lee, I'll be PM'ing you)?

Makes me so sad when I sit and think about it all. Yes, I'm lucky to be alive and that it was caught when it was but it still sucks...
DX Dec 2015 at age 41
Stage 3 RC
Radiation and xeloda
May 2016 LAR and temp ileo
8 rounds chemo
Nov 2016 ileo reversed!

User avatar
Youngjen81
Posts: 47
Joined: Thu Feb 25, 2016 9:46 am

Re: Venting !!

Postby Youngjen81 » Tue Feb 14, 2017 12:43 pm

I hear you. I began menopause at 35, stopped periods during radiation. Hot flashes and all. Sex is always painful. I need to see my gynecologist but am putting it off until I have a better sense of my bowels. Oh what fun.
Glad the cancer is gone but I can't help but remember how easy life used to be.
Diagnosed at 35 after 8 years of symptoms
T3n1m0, clinical diagnosis, suspicious spot on iliac crest and left lower lung, unchanged
28 radiation, with Xeloda 3000 mg
LAR with temp ileostomy 6-21-16, pCR!
Ileus and blockage, 12 day hospital stay
Port placement 7-26-16
Fofox begins 8-2-16
Mom to 4 boys(2, 10, 11, 22) they are my world!
Mother diagnosed 5/2016
Clinical stage t3n2m0, cysts on liver and kidneys
Last day of chemoradiation 7-28-16, can't wait! It's hard seeing my Mom in pain

DarknessEmbraced
Posts: 3112
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Venting !!

Postby DarknessEmbraced » Tue Feb 14, 2017 4:41 pm

I'm so sorry you're going through this and hope that your double mastectomy surgery goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17

User avatar
kellywin
Posts: 484
Joined: Wed Jan 23, 2013 4:46 pm
Location: Northern CA

Re: Venting !!

Postby kellywin » Wed Feb 15, 2017 12:57 pm

You need to find an awesome gynecologist. You need to use premarin cream daily (or similar) and the vagifem tablets. I know that with the breast cancer they may be leery of that (my mom had aggressive breast cancer, both breasts) and my first gyno wouldn't allow the cream and no to the tablets, I found another one and she said "eff that, you can't live like this". If I am really good about using them, sex is not like shoving sandpaper up there. It's not great yet, but we are working on it.
Kelly, mom 13 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only
7/2015 Clear colonoscopy!
4/2018 Clear CT!

tif2112
Posts: 114
Joined: Wed Jul 04, 2012 4:23 pm
Facebook Username: tif2112
Location: Henderson, NV

Re: Venting !!

Postby tif2112 » Wed Feb 15, 2017 5:07 pm

Mine has actually gotten worse. I also have a lot of lower back pain which the DR said "could" have been exasperated by the radiation. Luckily no menopause for me though.
51 year old female
Henderson, Nv

T3N0M0
2012 DX - Rectosigmoid Mass, Colon Resection, rx - radiation and chemo
07-24-2014 NED
2014 englarge lymph nodes, biopsy of 1 negative
07-07-2015 even bigger enlarged lymph nodes, shown on MRI & CT
2015 biopsy of bone marrow, lymph nodes-negative
3-6-2018 still enlarged lymph nodes, no diagnosis

JJ2212
Posts: 268
Joined: Mon Oct 14, 2013 3:54 pm
Location: Montréal, QC

Re: Venting !!

Postby JJ2212 » Wed Feb 15, 2017 6:34 pm

I'm sorry my friend. I hope you find a way to get rid of the pain.

I'm actually relieved that I'm single and don't need, nor have any desire, to confront this pain. I eat ice cream instead ;-)
Rectal cancer dx 04/13 @ 42, MSS, KRAS positive
T3N2M1 (1 lung met)
5 weeks xeloda+radiation finished 07/13
APR 9/13 (permanent colostomy), 27/31 nodes positive :-(
12 rounds of FOLFOX 04/14
Lung met growth 11/14
26 cycles Regorafenib (Stivarga) from 11/15 to 01/17
New lung met and chest/neck lymph nodes 01/17
1 cycle Folfiri

Lydia666
Posts: 662
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Venting !!

Postby Lydia666 » Thu Feb 16, 2017 10:31 pm

Thank you all for your stories. We should have a glass for being alive and having these conversations!

I'll keep you posted on my mastectomy.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
July 2016- ileo reversal
August 2016- DCIS
Feb 24,2017- prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Mom to 4 & 7 yrs kids (6 mo. & 3.5 yrs at diagnosis in June 2015)

mct
Posts: 35
Joined: Sat Nov 12, 2016 10:08 pm

Re: Venting !!

Postby mct » Wed Feb 22, 2017 1:47 pm

I can relate to your post. I was diagnosed with breast cancer Nov 2009 at 43. Had mastectomies....I won't lie, it wasn't easy. The procedure itself wasn't so bad, but it does take some time to get used to your new look. I felt disfigured and was very emotional, but with reconstruction, the passing of time and an awesome husband, I got used to it and feel totally ok with my new look and knowing that I don't have future mammos to worry about and that my chances of a recurrence are now less that the general population is a huge relief. You'll get through this just fine!

Diagnosed with RC T3 Nov 2016. I found the radiation very hard....glad it's done! Haven't had vaginal stenosis. Haven't used the vaginal dilator because we've had sex and I haven't had any issues...so I assume I don't have to worry about it? Hoping with time, this problem will lessen for you. I see that you're in Mtl, I'm in Ottawa. hello neighbour :)
Breast cancer 2009
Rectal cancer Nov 2016, T3N0M0, CEA - 10.3
28 days rads/Xeloda - finished Jan 19 2017
Surgery ULAR Mar 17, 2017
Anastomotic leak, surgery for ileostomy April 4, 2017
May 2017 CEA - 2

Lydia666
Posts: 662
Joined: Sat Jun 06, 2015 6:50 pm
Location: Montreal, Canada

Re: Venting !!

Postby Lydia666 » Thu Feb 23, 2017 12:52 am

Mct, I understand what you are saying . The emotional part catches up with the physical and can be very hard to handle. I am glad you are saying the mastectomy 'has not been too bad' because right now i am bracing for this massive challenge (on Friday!).
Keep having sex! Radiations have long term effects. I found radiations 'easy' to go through but the menaupose, possible back pain and vaginal stenosis because of it can be depressing.
Oct 2012- thyroid cancer
June 19, 2015 Dx@39 yrs- CRC-T3N1M0
No vascular, no perineural invasion
Aug-Sept 2015- 28 rad/5FU
Oct 28, 2015- LAR- temp ileo, neg. nodes- 0/11
March 2016- 6 rounds Xeloda/positive CHEK2 mutation
July 2016- ileo reversal
August 2016- DCIS
Feb 24,2017- prophylactic double mastectomy
May 2018 - clean CT
Sept 2018-clean scope
Mom to 4 & 7 yrs kids (6 mo. & 3.5 yrs at diagnosis in June 2015)


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot] and 39 guests