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Good news!

Shell bug's picture
Shell bug
Posts: 67
Joined: Nov 2011

I received the news on Friday that I am NED. This is fabulous news after 6 chemos, a blood infection, two allergic reactions, a port and Picc line infection as well as a Lynch Syndrome diagnosis.

I am trying soooo hard to be content and happy, but I am already worried about a recurrence. My tumor was large, surgically staged 2 but lymph nodes glowed after surgery. So who knows, could be 3c. My oncologist is optimistic that nodes glowed due to recovery. My cancer was also grade 3. Cancer had invade 1.7 of 1.8 cm of uterine all, it was so close to being really, really bad for me. All of these are huge risk factors for recurrence.

I'm just wondering if anyone has any advice on how to deal with the fear. I look at my boys and I am so thankful for each day, but I still can't help but want a whole bunch of days.

Also, I am meeting with a radiation oncologist soon. Any advice on radiation with my grade/stage? I am at a high risk for colon cancer as well, so worry about organ damage from radiation. I've read that it doesn't really help overall survival. I just don't know...

I hope everyone is doing well,
Rachelle

debrajo's picture
debrajo
Posts: 684
Joined: Sep 2011

Congratulations! Ain't God great?! You sound somewhat like me...I had other major problems to the degree that the cancer became secondary! I was diagnosed July 09 and didn't have surgery for cancer til Dec.09. I've been NED 23 months now and have worked myself up to an appointment every four months. FEAR is like grief, you can't put it behind you and you absolutely can't let it be in front of you, Let it walk with you and hold it at bay. I have appointments in Jan.,May, and Sept. Had to make a promise to myself. I will think and stress and moan and gripe in Jan, May, and Sept. I will NOT think of cancer in the other nine months. Those are my months! I've had six kids(40-18) and nine(and counting!)grands plus a husband and mother I take care of and those 9 months belong to us, not cancer. Your picture shows two beautiful boys. Make memories and enjoy them! You;re NED now,be happy and enjoy those babies! Best, debrajo

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Congratulations on the NED report. It is hard to deal with the "no treatment" phase of cancer. I think we naturally feel more in control when we are DOING something to fight the disease. And to not be doing something feeds the unknown. I have not mastered that fear thing but know that it's not good to hold on to it. Faith and trust is what we both need.

Regarding the radiation decision. I also have grade 3 (papillary serous) cancer. I was originally given stage 3a but my lymph nodes lit up throughout my body and I thought it might have been stage 4. Anyway, by doc did not recommend radiation for me since he did not think it would improve any odds. I have since had recurrence in lymph nodes in neck (which radiation would not have helped) and now in my pelvis (radiation may have avoided these) and my diaphragm area (radiation would not have helped this either).

In retrospect I do not regret not getting pelvic radiation because of the side effects it. I did have radiation to my neck and it was bad and I may likely have problems in the future because of it. If I were you, I would ask for the pros and cons of doing radiation and make your best decision. I think that most docs recommend it so they cover all the bases but in some situations it may be overkill.

Enjoy every moment with your children. Try to put cancer "on hold" like debrajo recommended. I wish you all the best.

Hugs, Mary Ann

Shell bug's picture
Shell bug
Posts: 67
Joined: Nov 2011

Thank you so much for your encouragement and your words of wisdom. I am so thankful for each day and celebrated my 39th birthday on Tuesday. One of my friends bought me shampoo, I got a good laugh out of that one. Wrinkles do not seem so important anymore either, I say bring them on!!!

I have decided to do radiation. For some reason, I am more scared of it than chemo. I will have one internal, and 25 pelvic and a focus on one para aortic lymph node. So, not whole abdominal. I am so glad I could avoid that one. I have so many risk factors that I feel like I should be aggressive with my treatment. If anyone else would like to share their experience, I would appreciate it!

Anyway, I am adjusting to no more chemo quite well. I still have a few aches and pains, but I feel a little bit better each day. I learned the blood clot in my neck has turned into scar tissue and has sealed of my jugular vein on the right side. That's kind of creepy, I still have numerous blood clots in my neck (bad port) so I will continue on blood thinners. Ahhh, the ravages of cancer.

Again, thank you for your support. It means a lot to me!

Be Not Afraid's picture
Be Not Afraid
Posts: 8
Joined: May 2012

Hi Shell bug,

I am also in your boat with Lynch Syndrome and diagnosed reproductive cancer (age 30). I'll have life-long colonoscopies too. Actually, they began in my 20's! My docs gave me Taxol/Carbo regimen and radiation will follow this summer. All taking place at Mayo in MN. Radiation has been on my mind a lot, as I only have 2 more chemos left. I already of lots of digestive issues outside of chemo and more with, so I'm not looking forward to what radiation is going to offer! My Uterine cancer had spread to a para aortic lymph node too, so I know they are going to concentrate on that area and my pelvis. I also think aggressive treatment is needed. I only want to do this once, plus I have my age as a positive to get through it, just like you!! :-D

I hope you post more about your radiation experience. It'll be nice to compare and get a 'heads up' about some side effects.

Peace be with you!

Shell bug's picture
Shell bug
Posts: 67
Joined: Nov 2011

Be Not Afraid,

Thank you so much for replying. There are more and more Lynch people on the boards all of the time. I don't know if that is a good thing or a bad thing. I think it is mainly a good thing because if I would have known I was Lynch, I would be in a better situation. My gyn waited nearly a year to do a biopsy because I had no risk factors. So, being healthy nearly killed me.

Lucky for me, I didn't have to worry about saving my fertility. That must have been a very tough call for you. I am so sorry you had to make that decision. I am assuming you do not have any children? If it's any comfort, I now have to look at my two boys and wonder if they got this mess from me. I inherited it from my dad who died of prostate cancer, but my grandfather never presented. I am not close to my extended family on that side, but learned they are riddled with cancer. Anyway...

I'm glad you are getting treatment at Mayo. I've only heard wonderful things, of course. I go to Seattle Cancer Care Alliance. I've just been referred to the GI cancer prevention center. My new doctor (who I meet on May 23rd) is a specialist in hereditary cancer. I really feel like I've been taken care of very well over there. Do you feel that way about your treatment?

I wish you well, only one more chemo! I must warn you that the time between treatments is a little unsettling. At least with treatment, you feel like you are doing something. Don't be surprised if you are uncomfortable at first. That's how it was for me. I will post when I have my radiation consult. I was prescribed treatment in Seattle, but will be receiving treatment closer to home so I can still work. I'll let you know since you are right behind me as far as treatment goes.

I'll send positive thoughts and prayers your way!
Rachelle

Be Not Afraid's picture
Be Not Afraid
Posts: 8
Joined: May 2012

Hi Rachelle,

I think it is a good thing to know if a person has Lynch or if it is within a family. You are not only saving your life, but the life of your boys, and anyone else in your family that knows your diagnosis. I knew Lynch existed in mine, as it runs in my mom's side. Her brother and brother's son, her sister, my own brother, and now me. Lynch didn't show up in my colon, it hit the reproductive areas, which is on the list for women who have the gene. On average, the cancer actually starts developing 10 or so years prior to finding it. The only reason I found it because it was in a very active stage of rapidly growing and presented symptoms. So mine started developing when I was 18-20yrs old.

I have 3 sisters, so some have already received a transvaginal ultrasound and bloodwork for preventative measures. We all get regualar colonoscopies. I say we are lucky and can educate our family and anyone else!!!

Yes, I am sure it is hard to wonder about your boys. I try to look on the positive of all this craziness and one positive is not passing this gene on. However, I would still have biological children if I could. God has another plan...waiting on Him can be trying! :-D

What will be a hard decision is if you should test your boys or not. That is tricky with insurances and the changing health care system and thinking about life insurance. Life insurance is where discrimination is still allowed. I've already been denied Life. ugh! Your boys will probably start getting colonoscopies in their teens? Maybe they have hit that age already?

I didn't get genetic testing done but had tumor testing done. See below for more detail:
http://www.mayoclinic.com/health/lynch-syndrome/DS00669/DSECTION=tests-and-diagnosis

My care has also been excellent. I see God's Hand all over my decisions with Mayo. I'm lucky it's only a 3hr drive. Some drive/fly from miles! Isn't it reassuring and one less stress to worry about when you have a good medical team. Sounds like you can rest easy too!!!

Glad to hear that you will be part of a GI team and they will take care of all your preventative needs. They will do more than just colonoscopies for you, which is good. There are several preventative measures/screenings they do with someone who has Lynch. Even though, you will have a life-time of tests, etc, at least this type of cancer has excellent preventative care. Many cancers don't. We will be survivors!!!

Sending prayers your way too! Good luck on the 23rd!
Brenda

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