PET Scan & Ooph

peacestrength

Need some encouragement today from you ladies - I am so tired of bc.  I have a PET scan next week and feel the anxiety - I get so tired of dealing with bc.  My ooph is scheduled at the end of the month - not looking forward to another surgery but want to permantly shut down ovaries.  

Momine

Scans are the worst! If possible, I think they suck even more than surgery. Chin up!

peacestrength

Thanks, Momine.  I needed to hear "chin up" from another survivor today.  

LKSHER

Just had an ooph a few weeks ago. Healed fast and well with no problem or side effects.

Anonymous

Scans are so stressfull. For me, a whole day is devoted to them when my onc prescribes them. I absolutely get so anxious over them. The drinking of the yukky stuff, the IV's the huge equipment, and then that awful wait to find out what they do or don't reveal. I'm so sorry you are facing this and the ooph. Hang in there. You will do it.

Oceana

peacestrength

I appreciate the encouragement

jab

A question ladies - Did your Oncologists (highly) recommend the Ooph? When I asked mine about it, she said there was a study currently underway in (China, I think....) that would conclusively determine if Ooph's where a good idea. Until this was completed (March?) she said she couldn't recommend it.

Momine

Jab, in my case it was recommended so that I could go straight on an AI instead of tamox. My cancer was/is lobular, and there is evidence that the AIs are more effective for that. I was close to menopause anyway.

jab

Interesting - Thanks Momine - My Onco was a fast with the no Ooph so I'll be curious what advise others got on this topic.

peacestrength

Jab - I pushed for an oop since I was estrogen dominant before I was dx.  My MO kept saying that if my ovaries "wakeup" she'd start giving me monthly shot to surpress them - I said no way - an ooph takes care of them ever activating again.  Plus, I want to be as aggressive as I can with treatment.   Yes, my MO mentioned about a trial as you state above - I don't think the results are available yet.  

Anonymous

I was already menopausal and my onc never recommended an ooph. Even though, my Er was 100%+ and PR 88%+ Could that high percentage of estrogen been from being on premarin prior to BC? Just wondering. And does this number remain the same after surgery?

Oceana

jab

Thanks peacestrengh - I too am a strong +er/+pr (I think it translates into 100% - my pathology was done based on the allred scale). I am 49 and have been using the Merina (hormone based IUD) so not sure of the status of menopause, but will find out soon as it was just removed last week.

Oceana I'm not sure if the numbers stay the same or not - It's the tumor that is being measured so I would think (could be totally wrong here...) that any additional cancer cells left in the body would have the same ER/PR characteristics.

fondak

I too understand the anxiety of scans.  I had a bone scan after a long period of pain in my hip.  My appointment to go over the results was on a Friday and I had a wreck on the way!  I just knew I was going to have to wait until Monday which is always the worse. I called to tell them I would be late....very late. Fortunately, my car was drivable and as I was finally able to leave the Dr called and told me to turn around, go home and rest; the results were great.

As far as the ooph, I asked my oncologist about it and she said it sounded like a good idea to her and my surgeon agreed.  I thought perhaps he would do it but my gyn, who also thought it was best, did it.  Another thing for me in having it done, is that my mom has osteoporosis really bad so she takes tamoxfen and the oncologist told her it increases the risk of uterine cancer.  So, I thought if I had to make the switch on down the road that would be one less worry.

Momine

Jab, there can be good reasons not to do an ooph, as far as I know. In my case, there was family history (mom) of ovarian cancer, but no family history of cardiovascular health problems. So there was good reason pro and no real reason con.

I have two docs, and one of them DID think it was overkill, whereas the other one, the one involved in the AI vs tamox study, was very much in favor. I went with the one who agreed with me He must be right, right? But seriously, the one in favor is the breast specialist, whereas the one against is a general onc. He knows his onc stuff, like which poison to give and how much, but he has no special knowledge of breast vs lung cancers, except in general terms.

Also, I have to say that I have learned to trust my gut through all of this. 2 hours after DX, I decided I would prefer a BMX. [This after they outlined for me what the follow-up on the "good" breast would be]. It is very personal, and there is no right/wrong really, but I just knew that getting the remaining boob squished and biopsied every 3 months was NOT for me. Besides, I like symmetry, even if the symmetry means two, neat vertical scars where the boobs used to be. The post-surgery path showed extensive LCIS on the supposedly prophylactic side, so good riddance.

@ It still pisses me off no end that so many docs seem to think that it is perfectly normal and fine for a woman to be partially disabled by childbirth and that she should just accept it.

The pre-op examination for the ooph showed that I also had some giant fibroids in my uterus, so we decided to do a partial hyster (leaving the cervix and the "neck" of the uterus) to get rid of them while we were at it. After the surgery they told me that my abdomen was full of horrible adhesions, which they kindly cleaned up. I no longer have a pot belly (caused by my bladder and uterus being glued to my abdominal wall), I pee normally and am no longer in pain. The path showed pre-cancerous cell changes in the endometrium.

My surgery was da Vinci robot surgery, done by an excellent surgeon (apparently there are 2 leading da Vinci specialists in the world and he is one of them), so that probably contributed to the good outcome and the easy surgery. I was up and running in a week.

So, for me it has been a win-win so far, but it really all depends on your personal history and circumstances. I would though suggest that you discuss this with more than one doc.

jab

Thanks Momie,

I really appreciate your reply. I didn't ask my surgeon about the Ooph, just my Onc. I'll do that next week. I am not familiar with AI vs Tamox study but will look into it. I am very concerned about the hormone receptor blockers as I understand they are a lot like hormones (but not quite). I have never been able to take the pill due to migraines and I WILL NOT go down any road that has me getting migraines again. It was debilitating for me. I still have a while before this needs to get figured out. I'm having my other breast prophylatically removed post radiation as my surgeon recommend it then to reduce risk of infection pre chemo so chemo was not at risk. (Based on some issues my group of chemo girls are having, it might have been a good choice) I have a lot of reasons to believe I have issues with that breast too, so will be interested in the pathology.

Have a good day all

JAB

Momine

Jab, the preference for an AI over tamox is specific to lobular cancer, which is what I had. It probably is not relevant to your situation.

The birth control pill adds hormones to your system, whereas the AI completely kills any and all estrogen in your body. It is like super-double-plus menopause. If migraines usually decrease with menopause (I don't know), they should also logically decrease with an AI.

The tamox works differently, in that it blocks the receptors on the cancer cells from using the available estrogen (as I understand it). I have no idea what it would do in relation to migraines, but this is certainly something you should discuss with your docs. You could also ask in the hormone treatment forum here if anyone has experience with this.

From what I can gather a lot of patients drop the hormone blockers without telling their doctors. The first year, my onc would ask all sorts of questions to make sure I was taking my pills. It got to be sort of funny, so I finally told him that I might be a bitch who complains a lot, but I am not a stupid bitch, so he can rest assured that I will be a good girl and tell him if the SEs are too much for me (they really haven't been so far, but there is huge variation on that). Point being that most docs are aware that these are not easy meds, yet they also know that the meds are very effective, so most docs WANT you to talk to them about any problems you have while on them.

jab

Thanks Momie,

It might be relevant. I had both ductal and lobular carc in my originial biopsies.