Thoughts filling my head.
 

Hello Everyone,

As my last schedule Herceptin gets near, I feel myself getting nervous yet excited. I am sure many have felt this way but I am driving myself crazy with the what ifs. I do my best not to think this way but find it comes in waves. I started to think of things I can do to help reduce my risk of recurrence. Eating better, exercising, staying on top of my doctor appointments etc. I have even thought about having a hysterectomy.
I am not sure if my doctor would even agree and haven't talked to her about it yet but wanted to see if anyone else has considered this. I am still young but I have my beautiful children and even before this mess we had already decided we didn't want anymore children. The cancer just confirmed our decision. I am prone to very large ovarian cysts. In fact just a few months ago my doc found a 6cm cyst and uterine fibroid. I have always been told they are not abnormal for women my age. Some of these cyst get very painful but do resolve on there own. I recently went back for a check up and it was gone. My fear is that they will see something and determine its a fibroid and/or cyst when its not. I don't know if that is possible but its something that is on my mind. With these so very common for me, the pain they cause, the risk and the fact that I don't want anymore children really make me feel like this is something I want to do.

Just wondering if anyone has any advice. Do you think I should even bring this up to my doctor? What are the risks of having a surgery like this. She is aware of the fibroid and cysts and hasn't ever suggested it.

Any advice and thoughts are greatly appreciate.

Thank you!

Re: Thoughts filling my head.
 

Have you considered BRCA testing? Could give you a little more info about distant risks, etc.

Re: Thoughts filling my head.
 

Hi Susan W,

I have had two different test one being the BRCA and they both were negative. My surgeon mentioned a new test that is being done but its new and not all insurances are covering it. Mine being one of them.
So I am not sure if that test would show anything different.

Re: Thoughts filling my head.
 

Painful fibroids is the most common reason for hysterectomy, if your doctor agrees to order one. There is a family cancer cluster called Lynch Syndrome (in honor of Dr. L. Lynch who had first introduced the concept) that involves cancer of the brain, breast, reproductive organs (ovaries/uterus), small intestines, and Non-Hodgkins Lymphoma. If you have a family history of any of these cancers, you might be able to convince your doctor.

These cancers all are caused by the mismesh of the genes - there's a defect of certain part of the genes that cause the cells not able to self-repair during cell division.

Doctors have learned a lot in the past few decades - they are now careful about prescribing birth control pills and surgical procedures that will lead to early menopause (still different from chemopause).

I had the same urge to get rid of everything after my first diagnosis of breast cancer. But it took a recurrence as well as new family cancer cases plus a BRCA test result to convince my doctor (that I was not a hypochondriac :) and get the procedure approved by the insurance company.

Re: Thoughts filling my head.
 

Hi There,

I am having the same thoughts and wrote about it in a thread labeled "am I crazy to keep my ovaries"

I have decided to keep my ovaries and relieve myself of my uterus and cervix. My small family history of cancer includes my mat. grandmother who had both breast and uterine cancer.

Here is why I am keeping my ovaries...I am only 5% ER+ and so my chances of another BC or ovarian cancer are no higher than the average womens. Plus, removing your ovaries at such a young age increases your risk of heart disease (the #1 killer of women) by 40%. That is HUGE!! Plus, ER is good for your bones.

So when I remove the uterus the doc will peek at my ovaries and if they are ok then they will stay.

If I read your signature correctly you are ER-

Last year when I brought this up to my docs they all said "no" because I was "too emotional". Now they say "yes" seeing that I have calmed down a bit and took the time to weigh the risks vs. benefits. Now it's up to the insurance co to make the final decision.

HOWEVER....I see you are prone to cysts/fibroids...so here is another thought floating around in my head...

....and it floats around there because my BC was hiding behind a KNOWN benign tumor in my breast....

...don't give cancer a place to hide.

Ultimately you will do what is best for you. These decisions are hard to make...

Best
Leah

Re: Thoughts filling my head.
 

It may or may not be a good idea to have a hysterectomy. Most of us experienced the anxiety at the end of treatment (surgery, rads, hormonals, perception). Up until that moment, we (subconsciously) think we are actively doing something to fight our cancer. But when we stop, it feels as if we are inviting the cancer to come back. Like we are opening the gates, so to speak. That is scary. However, most of the time, we have done enough. If there is no evidence of other risk factors, like a strong family history of cancer, you should be ok. If you did have a hysterectomy, would you worry about any other cancers? I did at first. Now that I'm 10 years out from diagnosis, I've started to relax. Actually, that sense of "I'll be ok" started a lot earlier. It gets better every year. So unless there's a compelling medical reason to get a hysterectomy, I would suggest you postpone your decision a bit. A hysterectomy is major surgery and your body has taken a beating over the past year. Heal a bit, take a breather and see how you feel in a year. In the mean time, keep having those ovaries checked, of course. And if they do give you a lot of pain and distress, talk to your doc about ways to treat them. But having a hysterectomy does not, as far as I know, reduce your risk of BC.

I've had huge fibroids for decades and as far as I know, I'm still fine. Which reminds me that it's time for a check-up...

Love
Jacqueline

PS> Congratulations on finishing your Vitamin H!

Re: Thoughts filling my head.
 

I would recommend discussing this with your doctor to get a better understanding of the pro's and con's of having surgery. Even though you aren't going to have more children, you are still young and your ovaries are still serving a useful purpose.

I just finished my Herceptin treatments a couple of weeks ago so I understand how you are feeling about doing something proactive to prevent a recurrence. I've decided to focus on living an anti cancer lifestyle as indicated in the Anti cancer a new way of life" book written by David Servan-Schreiber, M.D., PhD. Having surgery is a big decision so please do your research before making a decision.

Good luck to you! Its so great to be done with treatment. Celebrate!

Re: Thoughts filling my head.
 

Thank you all for your comments.

I think I let my anxiety get the better of me at times. It comes and goes and when it comes it is overwhelming.

Lien, your comment really hit home. If I were to have a hysterectomy would I worry about another cancer elsewhere. The answer is probably yes. It is truly amazing to me how fears and anxiety can change your body. If I start thinking about the "what if's" on a certain part of my body it seems like those "symptoms" get stronger. Just like when I had shortness of breath, the more I thought about the "what if's" the worse it got. I ended up having numerous tests because it was so very bad. Then during a scan I had my vein burst under the pressure (yuck) and as I sat there with an icepack and mind focused on my arm I suddenly noticed I was breathing fine. That's when it hit me, I was causing the shortness of breath because of anxiety. It's almost like I just turned it off because after that I was breathing just fine. I really never even though of it being an anxiety attack because i always thought that sort of thing doesn't last weeks. But it really does.

I am still going to talk to my doc about the hysterectomy but am more comfortable waiting at least until my body has recovered from this mess. At least that is if my doc doesn't want me to have it sooner which I am thinking she won't. I am blessed to have such a wonderful Onc who is taking very good care of me and I know is going to watch me very closely.

Ladies... Thank you so very much for being a great support system. I have a wonderful family but tend to make sure I keep a happy, strong face for them. That makes it hard when I have these overwhelming feelings. I don't want to stress them out so I tend to keep it in. But then I come here and let it loose and it helps more than I can say.

I continue to pray for strength and courage for myself and the wonderful men and women on this site.

I put my trust in the Lord!