Lumpectomy, chemo, raditaon,and a hysterectomy!
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Well, I'm new to this website, but I can identify completely with what I've read so far. I was diagnosed at 43 with breast cancer in my left breast and opted for a lumpectomy. 2 weeks later I started the "red devil" chemo and when that was over.... 36 doses of radiation. I made it fine through the entire treatment up until I had to have a hysterectomy 6 months after I finished radiation. The chemo stopped my monthly periods , but about 3 months after the chemo, they started again. Very regular as before cancer. So I had to have a hysterectomy to shut down my ovaries. I also went on to have bladder repair while they "were in that vacinity". After having 2 kids, my bladder wasn't the best in the world so they lifted it up. To make a long story short, the side effects from the hysterectomy have been worse than everything else! Yes, I'm lopsided. I have to wear a prosthesis and yes, I have scars on my breast. But I hate that intercourse hurts so badly!e
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Well, I'm back again because I submitted my first posting before I meant to! My 18 year old son entered the room and I accidentally submitted the last posting instead of minimizing it. ( I couldn't dare let him read this!) I can't even talk about this problem to any of my friends very easily and if I do, none of them are in the same situation that I'm in. If they have had a hysterectomy, they are taking hormones and they don't act like there is any problem with intercourse. Am I the only one that has this problem? It feels like needles are being stuck in me and I'm being ripped open! I know this is extremely crude sounding, but I don't mean for it to be. I just finally found an outlet to ask if anybody else has this problem and what do you do?
I've been married for 27 years and I'm 48. I don't want my love life with my husband to be over! I even started taking premarin to try to help! This is an absolutely a terrible thing to do since my cancer was 98% estrogen receptive, but I feel better since I'm on estrogen again. However, I thought it would take care of the terrible pain during intercourse.
Am I the only one with this problem? I've talked to my doctors, but they don't know what to tell me. Please give advice .... or give me your story. I will reach my 5 year mark this spring! So the cancer seems to be under control but the sex life isn't!
Abigail
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Abigail...I'm so sorry that you've had to join us, but glad that you did. It must have been hard going through all that you have without the support of other women like you'll find here. Some of those women who have had hysterectomies in addition to the other treatments will be along soon to help out with suggestions. One of them, in particular, jpann/Jule, is a wonderfully understanding, knowledgable and supportive sister. If she doesn't post soon, try PM-ing her.
For some immediate ideas, you might want to glance through some of the pages on the"MOJO" thread at the top of this page. It's 4 years worth of posts and very long, but I'll bet you'll see some interesting suggestions for the painful intercourse problem. In fact, I'll see if I can find a recent thread on just that topic and bump it up for you. Many women have found that using vitamin E oil, baby oil (esp. Burt's Bees) or a variety of lubricants to be helpful.
Hang in there, girl. It's most likely a very temporary situation, but we'll try to lend as much help as we can.
~Marin
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Marin,
Thanks so much for the info.... I've read through some of the postings on the mojo thread and I could not believe how many people have had this problem! I thought I was a "rare" case, the doctors have all acted like this is "unusual" to have trouble (my lack of interest in sex and the painfulness of it.) I feel so much better to know I'm not alone.....but I hate it that other people have trouble,too. It really is a bummer when you go through all these changes and then your sexuality is hit big time. It is so frustrating to fight the cancer and feel like you are winning but your sex life is dead.
I also feel very strange posting anything this personal on the computer. I'm not very good at talking about these things to anyone..other than my husband and my doctors.
I've never been the type to be able to talk about sex to my friends.... it is just not something I can do.
I also am not familiar with using a chat room or even using this type of forum. For example, you signed your name Marin but a picture of Fitchic was to the side and I have no clue if that is you or a different person. I'm totally a novice when it comes to this chatting and posting.
I even fear that someone will find out who I am. I am not ashamed of the breast cancer, but it is difficult for me to be so outward with talking about the sex problem.
Abigail
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Abigail...There is absolutely no reason why you should feel compelled to use any identifying information about yourself on these boards. Some women have found out the hard way that others can read what we post and sometimes can identify who we are. In fact, if people want to read your stuff and know the screenname you go by, they need only google the name and this stuff will link in. For that reason....and in order to make yourself completely and totally comfortable discussing delicate/ intimate/personal issues, I'll suggest that you make your screenname a bit mysterious and not revealing of your identity and then, also, only put information on your home page that will help us know some pertinent things about you without knowing who you might be. Some women even avoid saying what prt of the country they live in or what they do for a living. Each person has her own level of comfort and she should honor that by disclosing or keeping private any info she wishes to. As for me, I don't have any need to be anonymous. My daughter is grown and living elsewhere and I don't report anything particularly shocking anyway. Sexual details I'm comfortable with. If someone is googling me to read about my stuff, well I hope he gets off on it without bothering me!
I'm a bit odd, though....most women are somewhat anonymous. You can start by signing off as "A" or just your screenname (mine is "FitChik", but it's also my screenname everywhere else and on my license plate/my real name is Marin). But lose the real first name and other identifiers and, hopefully, you'll feel free to vent and discuss whatever you like.
~Marin
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Marin,
Thanks for the information. Actually my name isn't Abigail. It is just one I like so I did think ahead on that one!
As far as the painful sex thing.... I've been reading the threads and I'm trying to decide is this a side-effect of chemo? What exactly is going on to cause this? I know the lack of estrogen, and a hysterectomy made a huge difference, but did the chemo add to this side effect and effect the libido? Because lots of women have hysterectomys and don't seem to complain. They say it is the best thing that has happened to them.
The doctors just act like it is me with this "it feels like needles problem"!
I also have terrible memory loss. Certain memories are completely wiped from my mind. And it will be 5 years this spring since I was diagnosed. I finished chemo in the summer of 2003. I would think the memory would get better. But it is far worse than just a little problem. Certain memories are wiped out of my children growing up and things that happened yesterday are fuzzy sometimes.
I also cannot spell as well as I used to or concentrate as well. I feel like I've lost my "edge". I'm wondering if there is a way to exercise the brain for better memory recall. I guess this "chemo brain" is worse in some than others, I seem to have a bad case.
Other than the sex thing and the memory loss .... I've done great.
I appreciate this forum so much! We have all been through alot and it is so nice to have someone to listen and who has been through the same things!
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