#55714 11-02-2004 09:36 AM | Joined: Sep 2004 Posts: 12 Member | OP Member Joined: Sep 2004 Posts: 12 | Hi there; I am new here. Just for a little background, I had a partial glossectomy on 10/4/04. The margins were good, however they saw "angiolymphatic invation" which I have learned is a fancy term for cancer cells in the blood vessels of the lymphatic system. My lymph nodes looked clear on the MRI and I had a PET Scan yesterday. I am projected to start radiation on 11/15/04. I am feeling very lucky that the cancer was caught at an early stage (although a brush biobsy by the dentist missed it last year). The question I have comes from a meeting with my radiation oncologist on Thursday. He said that my husband and I should wait to start trying to have children for at least a year after the treatment has ended. He said there was a theoretical risk of genetic problems. I told my surgeon this yesterday and he said the oncologist was just being ULTRA conservative and there was no reason to wait. This may seem like and unimportant issue to be worried about right now. I probably should just be worried about getting through the treatments first. But I had been try to get pregant for a year before this whole thing came up and if it is not necessary to wait, I would rather not. Of course, I don't want to risk genetic problems just because I am impatient either! If anyone has been in this situation, or knows anything that might be helpful to me, I would really appreciate more information. Thank you so much! Sam
SCC T1N0MO right tongue, DX- 10/04 at age 30, partial glossectomy, 32 IMRT
| | |
#55715 11-02-2004 09:51 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Hi Sam, it took me a year just to recover from the radiation. I had extreme fatigue, lost a lot of weight and had muscle atrophy. I can't even imagine being pregnant in the middle of treatment let alone the possibility of genetic problems. I had to sit while showering in the end of treatment. It takes a good month of recovery for every week of radiation (and that doesn't mean full recovery either). The radiation will also effect your RBC for as long as 4 months. Maybe your surgeon is being overly optimistic.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | |
#55716 11-02-2004 12:22 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Sam,
Welcome to this site. I'm sorry you need to be here, but hopefully you'll find the information and support you need.
I was diagnosed with tongue SCC (Stage two) 15 years ago at age 39. At that time, my husband and I had been trying for quite awhile to have children, but based on what I heard about the impact of surgery and radiation, I decided it was best to try to put our plans on hold. I should add that we had tried for so long -- unsuccessfully -- that I was on the verge of pursuing either IVF or adoption as possible alternatives, but also put those off as well due to the cancer treatment. Frankly, I don't know how I could have dealt with pregnancy while going through radiation; as you will see from many of the posts on this site, radiation to the head/neck is extremely debilitating even for people who otherwise seem very healthy at the outset.
I don't think your oncologist is being overly conservative -- I think the word is realistic.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
| | |
#55717 11-02-2004 01:01 PM | Joined: Sep 2004 Posts: 12 Member | OP Member Joined: Sep 2004 Posts: 12 | Thank you so much for your responses. Of course we have put off trying to have children for the time being, and I know that I will need time to heal after the radiation. I was just wondering if it was safe to resume our efforts after I was feeling better from radiation. I had myself prepared that I would be feeling better within a few months. I guess it is good for me to hear that I might take longer than that. Everyone keeps telling me that since I am young (30) and in good health otherwise, that I should do very well. Part of me a pretty scared by the whole thing, and I think it feels better to try and think about getting my life back on the track I was on before this happened. I know that being as healthy as I can be is the most important thing before having children.. and I will of course wait as long as necessary. Cathy, had your doctors told you anything about possible genetic defects from radiation? Thanks, Sam
SCC T1N0MO right tongue, DX- 10/04 at age 30, partial glossectomy, 32 IMRT
| | |
#55718 11-02-2004 02:14 PM | Joined: Mar 2004 Posts: 117 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Mar 2004 Posts: 117 | Sam,
I am really interested in the story of your diagnosis. I am an oral cancer survivor and also a dental hygienist who does a lot of speaking on early diagnosis. You mentioned that you had a brush biopsy done last year that missed your cancer -- my cancer was initially diagnosed with a brush biopsy. Anyway, if you would e-mail me, I would love the opportunity to ask you some questions.
Thanks, Barb
SCC tongue, stage I (T1N0M0), partial glossectomy and modified neck dissection 7/1/03
| | |
#55719 11-02-2004 02:50 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Sam, I have done both. I've had 7 children and had radiation. Given what I know about radiation and how a person feels for months, and months afterwards, it is not the way I would want my first pregnancy to be. Waiting will be better for you and for your child. Your nutrition will be compromised for months from the radiation treatment and that is not good for a pregnancy. Take care, Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
| | |
#55720 11-02-2004 04:32 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Sam,
My doctors didn't say anything explicitly about possible genetic risks in pregnancy - but I don't think I really pushed them on that point either. At that time I was so stunned by the diagnosis and what was involved in treatment that I pretty much concluded on my own that I couldn't take on any attempts at pregnancy for quite awhile.
Are you being treated at a comprehensive cancer center? If you are, I suspect there is a fairly good level of experience there in dealing with pregnancy issues post-radiation. Since your radiation is going to be in the head/neck region, I'm not sure I know why there could be a genetic risk, but then I'm not a doctor. My biggest concern would be along the lines of what Minnie said -- getting proper nutrition during radiation (AND its aftermath) is an extreme challenge by itself, without adding on the nutritional needs connected with a pregnancy.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
| | |
#55721 11-03-2004 01:36 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | Sam, welcome to the site. Sorry you needed to find us, but we're glad to help as much as we can. My take on this, while I'm not a woman and haven't been pregnant, is the same as noted above. I can't imagine going through rad and being pregnant. Aside from the diet and strength issues, rad and chemo are poisons you are putting into your body. This cannot be good for a developing fetus. In fact, it would almost have to be bad. So I would hold off, if I were you or if it was my wife. Introducing foreign meds into a fetus, including all of the pain meds, having a peg (feeding tube) installed while you abdomin is being stretched, these are all considerations that would vote to put off pregnancy until after treatment.
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
| | |
#55722 11-03-2004 05:47 AM | Joined: Sep 2004 Posts: 12 Member | OP Member Joined: Sep 2004 Posts: 12 | Thanks again for your responses! I think that I might not have made my self clear completely clear. I would never want to be pregant DURING treatment. I was just wondering about my rad onc, comment that I should wait a year after radiation treatment because of possible genetic defects from the radiation. (I will not be doing any Chemo)However, all of your reponses about how long it takes to get back to good health after radiation have been very helpful. I was not prepared that it may take me more than a couple of months to be feeling better. I want to go into it will a possitive attitude, but being realistic about my expectations ia also really good.
SCC T1N0MO right tongue, DX- 10/04 at age 30, partial glossectomy, 32 IMRT
| | |
#55723 11-03-2004 06:53 AM | Joined: Jun 2004 Posts: 106 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2004 Posts: 106 | Sam, The thing is, feeling better does not mean feeling perfectly healthy! Soon to be five months post-radiation, I sure feel a lot better than I felt a month or two after, but I am definitely still convalescent.
Another thing, the treatment can temporarily stop menstruation. I thought I was going through menopause (no such luck).
I don't want to scare you, but as you said, it's better to be prepared. You'll want to be have your body concentrate only on you, not on a baby, until you are well.
Good luck! Leena
scc right tonsil T1N1M0, right tonsillectomy + modified neck dissection 3/04, radiation IMRT both sides X33 ended 6/04. Also had renal cell carcinoma, left kidney removed 11/04
| | |
Forums23 Topics18,252 Posts197,147 Members13,331 | Most Online1,788 Jan 23rd, 2025 | | | |