Decisions for treatment..

manna1qd

I had a unilateral mastectomy in 2001. Thinking of a prophylactic on the other side. My plastic surgeon did a beautiful job. So, I looked great but had a loss of sensation. That effected my sexual response significantly.

I remember hearing back then that Europeans got lumpectomies. The didn't automatically have the mastectomy option because statistically, they were yielding the same results. I know my decision for mastectomy as well as for a total hysterectomy nine months later, were immediately made out of fear and panic minutes after getting negative results and I never looked back...until I was a few years out.

I really wasn't well informed by the doctors or myself as to how those surgeries would change my life. I put myself through menopause ten years early and a few months after chemo. I don't think my poor brain (or my husband )ever recovered. There was a thickening of the uterine lining with tamoxifen but not anything wrong with my ovaries. My fear was ovarian cancer.

My oncologist never mentioned sterility as an effect of chemo. I didn't know my ovaries shut down until I asked a question about the risk of preganancy. She said the point was moot because my ovaries would shut down. How about being told I could freeze my eggs if I wanted to have more children? Never heard that one until later. I don't have regrets overall, and hindsight is 20/20. I just wondered what others' experiences have been with the decision making process. Informed decisions are always best. At least then you know what you are getting into or out of. In my case, I was so darn scared, I just wanted the facts I had to know without the details. Maybe my doctors were sensetive to that but I don't think so.

My first oncologist had me in for a half hour, corrected my surgeon's statistics to inform me my chances weren't as good as I thought, wrote everything down that she was telling me on her chart and then told me I wouldn't have time to ask questions, she had another patient! When I asked her if I would be able to take our planned trip to disney world she told me this wasn't about disney world! Just needed to get that oncologist experience off my chest! Doesn't she know when you have kids it's always about disney world? (I'm joking!)

This site has helped me tremendously. Just getting things out that have been pent up inside of me with nowhere to go. Thanks for listening.

seof

In my case, we had already decided our family was complete before I was diagnosed (2 wonderful daughters, and I am 43), so I never thought about sterility. Well, maybe I did. When we were first doint tests to decide what the best treatment options were, we did the gene test because my Sister died after a 6 year battle with cancer (both of us neg. for the gene). Before we got the results of the test, I decided if it was positive I would do double mastectomy and total hysterectomy. Since it was negative, and a lot of water under the bridge later, I had a double mastectomy (prophylactic on L. side, due to my Sister's experience). I am not currently considering hysterectomy because they say I'm not at a high risk for recurrence, statistically. I do have chemically induced menopause, which I was warned about. I was given a pregnancy test with the bloodwork before every chemo infusion (Taxol and Herceptin), so I assume they did not think my ovaries were nonfunctional, but I never did ask, since future pregnancies are not something I want anyway.

I understand the feeling of being scared and wanting "just the facts, Ma'am". I felt overwhelmed at first, and still do with each new phase and each new decision. Now that the mastectomy is done and expanders are in, I will be doing more chemo with new drugs (they found some cancer in the tissue that was removed, so Doc. wants to be sure they don't leave any) and radiation. The next decision will be what kind of reconstruction. I want to have it done with my own tissue because implants usually have to be redone at some point, but my Doc. seems hesitant to do that because it is bilateral and would use up a lot of tissue from the donor site, leaving more permanent weakness.

What to do, what to do? I am trying to find info about bilateral reconstruction, but it is harder to find than unilateral, and so far I have no response to my question from this site. Any ideas?

seof.

phoenixrising

That is just so unfair. But true. It's my experience that they really don't want to talk about the downside like potential side effects that can be permanent. I was accused of being negative because I didn't just assume I wouldn't get any permanent damage. I told him " I wasn't supposed to get this (bc) either, so I'm not feeling too lucky".You know all the literature talks about "your team who will help you decide"........what team?? My onc laughed when I asked about this team who all get together in a room and talk about your case. I travelled 700 miles to a major cancer centre, thinking I would get the best info and outcome. I didn't want to do chemo/radiation and was looking for a way out of it or at least not as much of it. It wasn't worth it. They pooh poohed my concerns about heart problems from the anthracyclines...but it's happening to someone. Right Kathi??

I told him I needed to be concerned about these things because who else is going to be??
I told him that in the end he gets to go home and will probably say to his wife, "gee that's too
bad about Jan, could you pass the wine and how are the kids". In other words, I would have
to live with it and he gets to move on.

It was also difficult to get decent time with these guys. Again my experience was so different from what the literature said it would be. Here you are finding out you have a life threatening disease and your trying to make the best decisions and he's looking at his watch. I thought there was going to be choices in treatment but the only choice given was to do chemo or not.

I cannot say I was offered any real information concerning side effects and what there was was downplayed like it couldn't happen. I did a ton of research and was still confused a lot of the time.
I blamed it on our health care system and lack of doctors (Canada), but then again I haven't paid out a dime. So I guess I shouldn't complain.

I don't think a lot of oncs keep up to date on current findings. I took info into mine and he said he had seen the article but didn't read it. I get a little pushy when it comes to what I want them to do and what I don't want them to do. I'm in the health care business and I guess working with them makes me more confortable questioning their decisions.

It's a real shame that people have to find out about things the way you have. And I know there are
alot of women who are in shock at finding that they have permanent damage from the tx. Personally, I think it's criminal to not tell you about the sterility. It would be my wish that you would confront this oncologist about this info and about being told you could freeze your eggs. Perhaps he will reconsider with the next patient.

Wish I could help more,
jan

manna1qd

phoenixrising said:

That is just so unfair. But true. It's my experience that they really don't want to talk about the downside like potential side effects that can be permanent. I was accused of being negative because I didn't just assume I wouldn't get any permanent damage. I told him " I wasn't supposed to get this (bc) either, so I'm not feeling too lucky".You know all the literature talks about "your team who will help you decide"........what team?? My onc laughed when I asked about this team who all get together in a room and talk about your case. I travelled 700 miles to a major cancer centre, thinking I would get the best info and outcome. I didn't want to do chemo/radiation and was looking for a way out of it or at least not as much of it. It wasn't worth it. They pooh poohed my concerns about heart problems from the anthracyclines...but it's happening to someone. Right Kathi??

I told him I needed to be concerned about these things because who else is going to be??
I told him that in the end he gets to go home and will probably say to his wife, "gee that's too
bad about Jan, could you pass the wine and how are the kids". In other words, I would have
to live with it and he gets to move on.

It was also difficult to get decent time with these guys. Again my experience was so different from what the literature said it would be. Here you are finding out you have a life threatening disease and your trying to make the best decisions and he's looking at his watch. I thought there was going to be choices in treatment but the only choice given was to do chemo or not.

I cannot say I was offered any real information concerning side effects and what there was was downplayed like it couldn't happen. I did a ton of research and was still confused a lot of the time.
I blamed it on our health care system and lack of doctors (Canada), but then again I haven't paid out a dime. So I guess I shouldn't complain.

I don't think a lot of oncs keep up to date on current findings. I took info into mine and he said he had seen the article but didn't read it. I get a little pushy when it comes to what I want them to do and what I don't want them to do. I'm in the health care business and I guess working with them makes me more confortable questioning their decisions.

It's a real shame that people have to find out about things the way you have. And I know there are
alot of women who are in shock at finding that they have permanent damage from the tx. Personally, I think it's criminal to not tell you about the sterility. It would be my wish that you would confront this oncologist about this info and about being told you could freeze your eggs. Perhaps he will reconsider with the next patient.

Wish I could help more,
jan

I am in the healthcare field too. That's why I look back and think about all the omissions in information. It doesn't make sense that we don't have a team like you mention. I would not have had any more children after cancer and I had two beautiful girls at that time. So, I was lucky. It makes me think there is some kind of niche for a person like me but I don't think anyone would pay for it. The best communication I received was from a night nurse who also was a crisis counsellor. What a perfect preparation for helping newly diagnosed cancer patients. The CNS I knew literally told me it wasn't a crisis I was in. That was a few days after I got home from the hospital. If it wasn't so serious, it would be funny. Thanks for your thoughts.

Unknown

I too am in medical menopause. I was 42 at diag. I was married later in life and we were still hoping for one child. When told I had cancer I too was terrified and obviously was immediately more concerned about living. No one mentioned freezing my eggs, but I guess I just assumed that would not be good because my tumor was ER positive and I would have to have hormone injections in order to have multiple eggs harvested. I still mourn the loss of fertility and my period. I feel like part of my femininity was taken abruptly along with my menstrual cycle. I too read many times about the medical "team". I had read that a whole team gets together and decides what the best surgery/treatments are for you right at the onset. After my lumpectomy I asked my surgeon about when i would see an oncologist but he said that would not happen until I was healed. He referred me about 4 weeks after the surgery. The onc. alone reviewed my case and made treatment recommendations for chemo. Actually I assume he decided alone, he may very well have consulted with the other oncs. at the cancer center. Once chemo was finished he sent me to a rad. onc. at the center and she recommended my rad. treatment. I must say, I feel blessed because all of my doctors are amazing, caring, patient people. I don't know for sure, but I think that oncs. probably consult with others in their practice/cancer center. I'm sorry that you were kind of kept in the dark about the possible side effects of chemo. I wasn't really told much either. I asked about possible heart damage and was told thats why they do heart function tests beforehand. I asked about luekemia and was reassured that luekemia as a side effect of chemo is extremely rare. That may be true but as you say, from where we are sitting, after going through the horror of cancer, the mere thought of having to go through it again is terrifying (no matter how small a chance). Hang in there--theres many of us out here that have the same regrets, thoughts and worries. That I think, is a help in dealing with it all....Take care and good luck with your surgery and chemo. E