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Pregnancy after radiation???

LFTTF
Posts: 12
Joined: May 2013

First off I want to thank everyone thus far on your support from my 2 previous posts.  I truly appreciate all the input and advice.  It really is comforting, I can't stress enough to be talking with people who are/have been in my shoes.  So thank you so much!

I just got back from my SIM appt which was very interesting to say the least.  I got tattooed and now know what that is. Everything so far is moving along pretty well.  One question that I asked my radiation doctor was how badly it would affect my reproductive system.  I don't have any children now but do want them in the future.  But, I didn't quite recieve the answer I was hoping.  He said that more than likely I would not be able to have children after my radiation is all said and done.  Does anyone know or have had children after radiation or possibly know someone....or anything really...I guess i'm just looking for a glimmer of hope.

 

Suzzett

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

Unfortunately, your rad onc is correct.  It would be highly unlikely that your ovaries would function after radiation treatment.  I was headed into menopause when I began my treatment, but was feeling like a period was coming on right before I had my 1st. zap.  It didn't happen and once I had that first treatment, all the PMS symptoms I had been having were gone.  I have never had a period since then.  I do not know of any woman who has undergone this treatment who has conceived afterwards.  However, one suggestion I would make to you is to ask your gynecologist about the feasibility of having surgery to move your ovaries up out of the radiation field.  I know a woman who had this done prior to the start of her treatment.  What I do not know is whether or not she was able to get pregnant after treatment was over, as she dropped off of the forum where I met her.  Of course, there is no guarantee that this procedure would preserve ovary function, but it would be worth asking about.

Phoebesnow
Posts: 447
Joined: Apr 2011

U should think about harvesting your eggs.  As mp327 said you should have your ovaries moved out of the field.

 

I have heard of men being able to have babies after radiation.  This is not the norm.  If u searched I'm sure u will find a few woman

 

Best of luck on your journey.

Marynb
Posts: 1134
Joined: Aug 2012

I guess if I were you, I would have my eggs harvested for the possibilty of getting a surrogate when you are ready. I don't know if you have time for that. If you are at a top notch hospital, they should be able to do it before treatment. It is worth exploring. I am sorry that you have to go through this at such a young age. There are so many possibilites now. Seems lke you should ask some specific questions. Ask whether your uterus would be affected. You could consult with a fertility clinic. A fertility clinic at a top notch hospital has surely dealt with similar situations. Stay optimistic. Ask lots of questions and take one day at a time.

LFTTF
Posts: 12
Joined: May 2013

Thanks for the info. I will ask my doctor about all of this.  I kind of went into another moment of being frozen when told No, and I lost all track of thoughts and had no other questions.  I'm hoping they will be able to do something but they also do want to delay my treatment any further out than it is now.  I'll post an update.

Suzzett

Marynb
Posts: 1134
Joined: Aug 2012

I don't know how aggressive your cancer is, but I think that it would be worth a week or two delay to make sure that you can have the best future that you can. I don't know if the doctors mentioned a proliferation rate or whether they did a biopsy. My quess is that the cancer I had was slow growing, because it was stage 2 and had been misdiagnosed for years. There have been some here who had a delay in treatment for a month or more due to sxheduling problems. These are all things that you should ask your doctor right away. Perhaps the oncologist can refer you to a fertility specialist.

Keep your chin up! You will get through this and then cancer will be a distant memory! You are in my thoughts and prayers!

sephie's picture
sephie
Posts: 520
Joined: Apr 2009

suzett, i am so sorry that you have to think about this but perhaps you can take a few weeks ....my cancer was missed for over a year and then i had to wait 2 months after diagnosis to start the tx at MD Anderson.. i was still stage 2 no nodes no metastisis and it was a poorly differentiated tumor... so maybe you can get your eggs harvested before tx .... i think this is slow growing....hopefully you can do this...... take care and we are all here to help..... sephie  i was already too old....

LFTTF
Posts: 12
Joined: May 2013

Good morning, so I have decided to get another opinion on this whole thing.  During all of this chaos I didn't realize until last night that neither my oncologist or radiation doctor even asked me about if I planned on having children.  Nor did they really specify the effects it would have on my reproductive system.  With that and realizing it now, I have eagerly considered getting a second opinion.  I'm not scheduled to start chemo/radiation 2 weeks from now, so I am going to take this time to explore else where.  I really do want to try anything and everything to at least have a little hope of having a family one day.  Also,  when I did my SIM yesterday the nurses didn't really inform me of what  was going on or what they were about to do.  I had to ask them everytime what is that for? What does that do?  I felt like they were treating me as if I were suppose to know what was going on.  Also, when I first met with my oncologist, she had not gone over my records at all prior to meeting with me.  She was literally getting to know me and my issue with our first appt.  In another appt with her about my scans, when I asked what stage my cancer was, she "wasn't quite sure" and to ask the radiation doctor and he would be able to give me an answer.  I've been so scared and nervous this whole time and just didn't see all this before. It almost seems both my oncologist and radiation doc are  not that familiar with this cancer and I feel uneasy with it. 

Does anyone have high recommendations for cancer treatment centers in the Northern California area??

Phoebesnow
Posts: 447
Joined: Apr 2011

Wow, that's all I can say about your team.  I have kaiser and they explained everything.  I went to City of Hope for a second opinion.  I was so glad I did, kaiser tried to short me on the second round of chemo by not giving me the second dose of Mito.  I told them I wanted to go with the recommended guidlines set up by the City of Hope and that they had originally said they were giving.  U need to know everything.  There are chemo shortages now.  U don't want to substitute.  even the machines that are  administering the tx is important.  

 

Do u have someone who loves u to go to these apps with you.  I recommend that you read Theresa Mayhews book, so u can be fully prepared.

 

I was dx 9/27 and tx started 11/1. 

 

Some plans will help pay for the harvesting and latre for the invitro.  I do think u can carry the baby, but u need to talk to your doc about this.

 

I am very concerned for you.  U need to do all the research u can.  You need to be pro active.  You can not trust that the doctors know what's best for you.

 

I am so glad youfound this group.

Phoebesnow
Posts: 447
Joined: Apr 2011

This is an amazIng group for so many things.  Cancersupportcommunitybenjamincenter.org.  Phone number 310 314 2555.

 

They offer so many services and workshops and free goods and services.  They might be able to help you harvest your eggs.

 

I am in west L.A.

 

 

LFTTF
Posts: 12
Joined: May 2013

Yes I do agree. And I have been trying to do as much research as possible and just knowing there are other options I was not told about makes me angry.  I have already started the process to get seen at another facility.  I'm just waiting on replies back.  And yes, my boyfriend has been amazing through all of this.  His office is working with him so he can be here with me at every appointment which he hasn't missed one.  Very greatful to have someone like him. And i'm very grateful to have found this site this early! I don't think I would be this empowered if I did not find this site and hear from you all and your advice.

Suzzett

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

One facility worth checking out might be University of California/San Francisco.  I know of a couple of people through my other blog site who have seen Dr. Berry there and think he is absolutely wonderful.  Check out the website I have given you below for more information.

http://id.medicine.ucsf.edu/analcancerinfo/about.html

After reading your post about the doctors you have already seen, I agree that you need to seek a second opinion.  Having doctors who are unfamiliar with this cancer is not in your best interest.  I was not treated at a major cancer center, but my doctors have all been top-notch and very knowledgeable about this disease.  With this chemo/radiation treatment, you do not get a do-over if it's not done right.  Therefore, it's critical that you get the correct treatment.  I may have already recommended this site to you, but if not, I would suggest that you go to it, register, then print out the guidelines for treatment of anal cancer.  This will give you lots of good information about the most current treatment and follow-up.  The link is www.NCCN.org.  Being well-informed about your disease will only work to your benefit, as you can ask the right questions and get a feel for how familiar your docs are with the protocols. 

Please keep us posted on how your quest for a second opinion goes.  I think you are doing the right thing.

Marynb
Posts: 1134
Joined: Aug 2012

I think you are doing the right thing. You can do a little research. Cancer hospitals are Ranked. Here is a link for you to get to the best place that you can. http://health.usnews.com/best-hospitals/rankings/cancer

It really matters where you go. I know that some people could not go to a reputable place due to finances. That may be the case for you, I don't know. In more reputable centers, they have the state of the art equipement and the best doctors. I do know that one of the best places in the country for anal cancer is University of San Francisco. Other than that, look and see how the hospital near you is rated. Looks like depending where in California you are, UCSF Medical Center, then Stanford Hospital, then City of Hope in LA.

Under your circumstances, you need to be at a hospital that can treat you in a wholistic way.

Stay strong! Now that the initial emotional shock is past, you can better make decisions.

LFTTF
Posts: 12
Joined: May 2013

Thank you marynb and mp327.  I have already got the ball rolling on seeing a fertility specialist. And a referral to a different hospital.  I did not mention that I am military so I have the great saving grace of having alot of this paid for, unfortunately I found out the fertilization preserving is not covered completely, but i'm willing to take my chances.  I really wish I lived closer to the San Francisco area but it's 2hrs or so away.  I am however looking into the Sutter Health Group located in Roseville CA. Hoping to hear some answers soon!

Also I got registered on the NCCN website and VERY helpful and good information! Should have registered sooner, but thanks for bringing it up again!

Thanks again so much!

Suzzett

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

It sounds like things are moving right along for you--that's great.  Please keep us posted as to where you end up going for treatment and what the plan is.  I'm glad you got on the NCCN website--it's great info for a patient to have.

jcruz
Posts: 215
Joined: Jan 2013

I think that the word "reputable" here is a bit charged.  I am one of those people who had no choice about where to be treated because of my insurance and personal and financial circumstances.  Is the implication here that all other doctors and hospitals are disreputable?  That they are simply not worthy of the education, credentialing and accreditation that they have?  This is what I know (and I know I've said it before)  -- I was treated in my home town last fall and I don't have cancer now.  I think my doctors knew what they were doing.

I do agree with your listing of California hospitals for cancer treatment.  In a ridiculously ideal world we'd all be going to one of them for treatment.

 

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

I, too, was treated in my hometown at the local hospital (which is affiliated with a large hospital system).  I feel that I received excellent care there with state of the art equipment.  I don't believe any of my doctors are named as "experts" in the treatment of anal cancer, but their knowledge is extensive and they knew what they were doing.  I am close to being a 5-year survivor.  There are lots of survivor stories about getting excellent care close to home, which I believe has its advantages.  Primarily, for a lot of people, a support system of family and friends is already in place, causing less stress and resulting in more needed assistance.  I think that plays a role in successful treatment.  Personally, if I had been staying in a strange place in a hotel room or lodge facility for cancer patients, it would have been a disaster.  I think emotionally, I would have been a complete mess.  Anyone diagnosed with this disease needs to make sure their doctors are well-versed on treatment and follow-up and that their hospital or treatment facility is state of art.  All that said, I think for cases of advanced disease or complications, the whole decision process changes. 

Marynb
Posts: 1134
Joined: Aug 2012

The problem is most patients don't know the extent of their illness before diagnosis an treatment. In my case, if I had stayed at the local hospital, I would be very sick or dead right now. I did not know how complicated my case was until I went to the right hospital. I got 3 opinions. The local hosptial had me dead and buried!

Marynb
Posts: 1134
Joined: Aug 2012

The problem is most patients don't know the extent of their illness before diagnosis an treatment. In my case, if I had stayed at the local hospital, I would be very sick or dead right now. I did not know how complicated my case was until I went to the right hospital. I got 3 opinions. The local hosptial had me dead and buried!

mp327's picture
mp327
Posts: 2855
Joined: Jan 2010

That is true, as I had no idea I had cancer when I went to my first appt. with the colorectal surgeon.  I thought I was just going because my internist told me I had hemorrhoids.  So, I would say that a successful treatment of this disease does not start with a reputable hospital, it begins with a reputable doctor.  Many of us know this all too well.  I would agree that some small town hospitals would not be the best places to go for treatment.  I just happen to be fortunate enough to live in a very large metropolitan area with excellent facilities.  I still maintain that I would never have made it through treatment if I had had to be in a strange place, staying in a hotel, etc.  I barely made it through treatment staying at home, sleeping in my own bed at night.  Getting through this is as much mental as it is physical, IMO. 

jcruz
Posts: 215
Joined: Jan 2013

I think that the word "reputable" here is a bit charged.  I am one of those people who had no choice about where to be treated because of my insurance and personal and financial circumstances.  Is the implication here that all other doctors and hospitals are disreputable?  That they are simply not worthy of the education, credentialing and accreditation that they have?  This is what I know (and I know I've said it before)  -- I was treated in my home town last fall and I don't have cancer now.  I think my doctors knew what they were doing.

I do agree with your listing of California hospitals for cancer treatment.  In a ridiculously ideal world we'd all be going to one of them for treatment.

 

Marynb
Posts: 1134
Joined: Aug 2012

Jcruz. . By reputable, I mean reputable. A small town hospital could be prefectly reputable! I did not say the best hospitals, or the hospitals most highly ranked. Of course, I would recommend that every patient get to the best place that they can. This requires research so decisions can be made. Of course there are lots of factors. I decided to travel 2 hrs. each way everyday in one of the worst New England winters in recorded history because the hospitals in the state where I live are infamously bad, and not even minimally reputable.

Sorry to say that there really are some hospitals that are not reputable, have had accreditation pulled or questioned, etc. I do wish it were true that all doctors and all hospitals were at least reputable, but they are not. Comes from my work on medical malpractice cases. Buyer beware!

jcruz
Posts: 215
Joined: Jan 2013

Yesterday was a bad end to a very bad week.  I've been feeling like my nerves are on the outside of my skin and everything makes me jumpy right now.   I should have known to step away from the keyboard.  I like reading your posts and admire the strength I see when I read them.  

Marynb
Posts: 1134
Joined: Aug 2012

I do get it and understand that there are many who chose local hospitals for various reasons. I admit to advocating that every cancer patient get the best medical care possible. I have worked on too many malpractice cases that would make your blood boil! Just because a person has MD after their name does not mean they are competent, and not all hosptials are well equipped! It really does matter. But, as you said, if you have alreay been treated, and you had no complications and are now NED, that is all that matters to you!

Stay well and have a good week. I have one of those weeks coming next week.

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