should I consider an oop?

jackboo09

Happy new year to everybody.

Am looking for some advice from all the highly knowledgable ladies out there. I am 41 and completed x6 TCH in Aug 2011. I have now had treatment number 12 of Herceptin also. In Nov 11' my period returned and did so again in Dec (on time!)

I was actually pleased because the hot flashes stopped and I feel more like my old self. However, from my reading of these boards I'm confused about whether I would be better off having an oop or Lupron (think its Lupron in injection form). Asked my onco and he suggested that studies showed no significant benefit? Just wondered whether any of you have struggled with this issue and what advice you were given. 

I have a muga scan every 3 months as I had a LVEF drop to 47 a few months ago. Now at 50 and on Ramipril. Am probably not the best candidate for a general anaesthetic at this point.

Thanks in advance to anyone who replies. Most grateful.

Liz

voraciousreader

Sorry to hear about your diagnosis.  There are many discussion threads on Lupron and Zoladex injections.  If you go to the top of this page and click on "Search" (right below the "Log Out"), and then do a search for "Lupron" or/and "Zoladex"  or "Ovarian Suppression", you will find lots of information.

Regarding Ovarian Suppression offering SIGNIFICANT benefit?  The answer is, there IS NO answer yet.  On the other threads you will read that there are several studies investigating whether or not it is helpful.  One of the studies is called the "SOFT Study."  In Europe, many physicians are doing Ovarian Suppression.  However, here in the United States it is NOT yet the Standard of Care.

Also, do a Google search for the 2011 NCCN breast cancer treatment guidelines.

I would highly recommend that you get a second and, possibly a third opinion.  Good luck!

jackboo09

Hi voracious reader.

Many thanks for your reply. I was delighted to hear from you as I have just been following the thread on zometa with much interest.

I am feeling rather deflated with my onco here in the UK. He seems to have pegged me as overly anxious. The clinic I attend every 3 weeks is always so busy.I think I will make an additional appointment to see if I can discuss this whole issue at length. I am learning from this site that we must be our own advocats with bc. So often the treatment has se's and with OS there is a definite downside, menopausal symptoms etc. 

Anyway thanks again for your advice and for taking the time to reply.

Liz

voraciousreader

I'm sure you will be discussing the Zometa as well!

Good luck across the pond!

Leah_S

Liz, what you need to know is the SEs of Lupron. Once you know those you can make a decision, since if you have an ooph, then once you've recovered from the surgery there are no more SEs. Also, since you're 41 if you go with Lupron you will probably have to be on it for a long time - it could be as long as 10 years.

So you have to decide between long-term tx, surgery, or doing nothing.

It's never easy, is it? Best of luck.

Leah

jackboo09

Hi Leah

Thank you for replying to my post. I have been mulling this issue over all day. As you pointed out I am only 41 and lengthy Lupron tx doesnt seen desirable. I have decided to mention this again to my onco on Jan 13th. I don't finish Herceptin until May so still in active tx. 

Such hard decisions. Just wish this was all over, but it won't ever be over really. Thanks again for your post. Wishing you a happy, healthy new year.

Liz

voraciousreader

Liz....Some women try Lupron or Zoladex for a few months to see how they feel...and then some go on to oophs...  Another thing you have to consider is do you want to shut down your estrogen at such a young age because the estrogen also protects you from heart disease and bone issues.  You need to look at your family health risks and include that in the equation.  For me, it wasn't such a difficult decision because I was 53 and premenopausal when I began Lupron injections.  I've had more years of estrogen circulating in my body, so it was a no brainer for me. 

I hope you have time to read the other threads and also look at the SOFT and TEXT clinical studies and the NCCN breast cancer treatment guidelines.  Again, there is no easy answer...especially for your age.  Good luck.

meglove

Liz,

my family doctor has suggested a complete hysterectomy. I am 40 now, just finished herceptin. I will call my Gyn to book an appointment to discuss and see if I could have the surgery soon. I felt a lump at lower left abdomen and my family doc has arranged an ultrasound next week. 

 I am prone to have ooph plus removing uterus. haven't thought about the injection yet. My only concern is the impact to the heart. Hope ladies who has done ooph at young age could see your post and make some comments about how they feel and cope with related health issue after recovery from surgery. 

 It is a difficult decision at our age. I was hoping to wait two more years but maybe I should do it now. I was hoping to get a break from surgery for a year or two but I felt I am getting myself ready when I look at the face my 6 yrs old. 

LouLou40

This is the explanation from my Onc and why he dosen't recommend Zoladex for me, our age is similar and you need to consider long term health problems of being put into menopause at a young age. I have osteoporosis from chemo induced menopause and now on zometa for that.

I was dx triple pos just after I turned 40, went into menopause from chemo for 2 years before my period returned and have been premenopausal  for over 7 months now and my Onc dosen't want me to take any hormone therapy.

I discussed Zoladex with my Onc  and also discussed Tamoxifen but he is of the opinion that it's not as effective for Her2 BC and would only reduce my recurrence risk by a small amount and the SE out weigh the benefit for me. My ER was 40% and my PR was 20% which might have something to do with his recommendation as well.

My Onc said the zoladex trials were only for a duration of 2 years and since I had ovarian suppression with chemo for that period there would be no advantage of hormonal manipulation for a longer period, putting me into menopause for a longer period with zoladex or hormone therapy would further decrease my BMD and wouldn't be good for my long term health.

He also said the first 2 years is the greatest risk of recurrence with Her2 BC and by the 3 year mark (post surgery) the rate drops and therefore he was comfortable with me not taking any hormone therapy. 

He said it was the Chemo and Herceptin which are the most benefit in preventing recurrence and that further ovarian suppression after a 2 yr period was not indicated from clinical trials.

You need to discuss all the options with your Onc and carefully weigh up all the pro and cons.

personally I would do Lupron/zoladex for a couple of years but would be reluctant to have my ovaries out as you could end up with osteoporosis and heart disease which are serious diseases.

Lou 

shore1

Lou, did you mean your onc was of the opinion that tamoxifen or zometa was not as effective for her2+? I had taxol/herceptin #8 today & talked w onc about tamoxifen vs ooph or lupron. She recommends tamox unless I have problems with it. Im 41 & bc was 90% ER+ 90%PR+. After 5 years years on tamoxifen I will only be 46, so im not clear on what to do then. Of course I think of that question late tonight so I will have to ask her next time. Thanks.

LouLou40

Shore - there are a few studies that suggest Her2 BC is resistant to Tamoxifen, my Onc prefers to use AI's for Her2 BC, he said if I want to take it I could but he didn't 't think I would gain much benefit from it and would probably cause me further bone loss and hot flushes.

Just google tamoxifen and her2 and you will find lot's go discussion about it being resistant

jackboo09

Hi Voracious

I welcome your comments regarding the risks posed by going into early menopause. Do I really want to face heart and bone problems after coming through this rigorous treatment? I suffer occasional flare ups of sciatica as it is and have had some palpitations whilst on Herceptin.

Also, am I right in thinking that the Her 2 part of my diagnosis trumps the ER+ part. Hence, Herceptin should hopefully be the key to preventing reoccurance. 41 seems such a young age to be in menopause. My heart goes out to ladies in a similar situation. However, I read so many hopeful posts of women who are 3 yrs + out with Her 2 (similar ages and node status) and I wonder how many had some kind of OS. You are right: this is a tough call at this age. 

Final thoughts: How different the health care in UK and US. I chuckle when i hear about people interviewing oncs. Here it feels like: I am your onc, you will follow this tx plan, do not question. My fellow patients kinda follow this path whereas I read and question. I bug the hell outta my team, but I don't care. My life......

Liz

jackboo09

Meglove

Hello. Thank you for replying. Im sorry to hear that you are facing a hysterectomy. It seems to be such a difficult decision to make but perhaps there are clearer reasons for you (the lump you mentioned)

I am also a mum to Jack- 10 and Lucy- 8 I want to do my best for my children as well as myself! As I was saying to voracious, I feel very much on my own in terms of tx decisions. I had one very brief conversation with my onc about OS when my period resumed and then I brought it up.

Let me know how you get on. Wishing you all the best.

Liz

jackboo09

Hi Loulou40

Thank you for your very helpful reply. I was also 40 at diagnosis. I finished TCH chemo in Aug 11' and was amazed to have a period on Nov 20th! It seems my ovaries are back on track as a second period followed just over a month later in Dec. I am torn between feeling good about myself now that I'm having periods again. (I had started to experience hot flashes and vaginal dryness whilst on chemo.) Now these symptoms have vanished. However, I am concerned about the levels of oestrogen. Tamoxifen is supposed to decrease the risk of recurrance, yet not be as effective for Her 2 patients. This hasnt been mentioned by my onc but then again I'm not surprised.

Sorry to hear about your bone probs post tx.Your onco seems to have given you lots of logical sensible advice and the decisions seem appproriate for your case. I feel that I want to be in a similar position so back to my reticent onco to discuss further. 

Great to hear that you are 2 years out (or a bit more!) Gives me lots of hope.

Liz

LouLou40

Jackboot I'm 3 yrs post dx in a few weeks and feeling fantastic. I took Arimidex for a yr before my BMD took a dive, and my estrogen levels remained low while I was still in menopause so wasn't concerned about hormone therapy .

I was concerned when my period returned and my bloods indicated my estrogen level was high again but my Onc wasn't and I was really shocked when he thought the SE's would outweigh the benefits for me. He did say when he first put me on the AI that if my period returned the first couple of years he would recommend zoladex but because I was near the 3 yr mark he thought it was reasonable to do nothing further.

I did ACTH and have no Long term SE's from chemo and have managed to get my fitness back to a really high level and really enjoying having estrogen back in my body, I found being in menopause at 40 for 2 yrs really hard on the body and very aging.

Hope your discussion with your Onc gives you the answers you need to make an informed decision.

jackboo09

Hi LouLou40

So glad to hear how well you are doing and that you have had peace of mind with the tx decisions you made. I will be talking to my oco and will post a thread with the outcome after Jan 13th. I can totally relate to your comment about enjoying having estrogen back in your body. I just dont relish potential menopausal symptoms and other serious risks when I am beginning to feel better each day.

I still have 6 Herceptin to go. I will be glad to finish because my EF hovers around 50 and I sometimes experience heart palps. I used to work out but for now feel better fast pace walking. 

Did you experience a boost in feeling better once Herceptin was over. I just seem to get tired and occasionally a bit breathless and achy. Hoping that this will cease in May when I'm done.

Liz

shore1

Its interesting, & kinda scary, how oncs differ on things like this & what they see as important and what they are unconcerned about. My onc did not even mention her2+ in relation to tamoxifen. Just said herceptin deals w the her2, and tamox blocks the estrogen, especially in highly ER/PR+ cases, while not depriving your body of estrogen it needs for bones, heart etc. Im being treated at a major center in phila, but will seek another opinion on tamoxifen / ooph. Now that tx is almost done, I hadn't thought ahead to this part being such a burdensome decision. Thanks all for your informative posts.