Hi, I am 60 going on 45, had a recent mastectomy, and now like Debbie have to make a decision between Tamoxifen and Anastrozole - Aromastase Inhibitor. I have read and re-read many times all the info especially side effects, none of which appeal to me. My pathology was DCIS and invasive breast cancer in one breast with hormone positive receptors. The onc said if I had to get cancer then this was the best one to get, so while I am profoundly grateful for that, coped well with the diagnosis and 2 surgical procedures (hookwire and mastectomy, this decision about which tablet to take is really doing my head in! If anyone has anything to offer, that would be great. Good luck everyone and thanks for posting your stories.

Hi Michelle (& Christine), my understanding is that Tamoxifen works in pre menopausal women and AI works post menopause. The way they work is different, so it depends where you are at. I am currently waiting on a blood test to confirm I am in menopause then will start Femara. I have had a series of bloods done over the past 10 months to confirm menopause. Christine I am happy to read your comments on Femara, as the potential side effects are really getting me down. And I haven't even started. Take care ladies xxxlouie

Hi Michelle,Christine,and Louise,Here is another spin on this topic.I am 58 and have been in Menopause for 6years.My chemo is finishing soon,and my oncologist,who I really admire,has been talking to me about this subject.I will be going onto Tamoxifen for 2years and then switching to an Aromatase Inhibitor for 5,then we will review things,and maybe continue for another 5.The reasoning for this is,that the benefits of Tamoxifen are well known,but also the increased risks with it long term.Of course,AI drugs have the effects on the bones in post menopausal women.So I guess you could say,the best of both,but hopefully avoid the risk of endometrial cancer by using Tamoxifen for only 2 years.My bones are particularly good,and in that. 2 years,I will be working hard at keeping them that way.Hope that this may help,but it probably adds to the confusion.;)Cheers. Robyn.xoxo

Thank you very much Robyn W, your comments were really helpful. My onc says she is thinking 2 and half years on Tamoxifen and then follow with the same for the Aromatase inhibitor, then reassess. The reality is that's what we are being offered here and now. I don't feel as panicky as I did and I guess now I just need to get on with it and get the script filled for Tamoxifen. The doctors and my breast care nurse are very supportive so hopefully any side effects can be managed well. I am having a bone density test in a few weeks and am hoping that the results will be good. My greatest fear with side effects of treatment is the bone and joint pain as earlier this year, for approx 3 months I had a severe sudden onset of arthritic type pain from shoulders to fingers - couldn't even pull the quilt up on my bed. I had treatment and the pain, apart from slight sensations occasionally, has gone. I am no longer on any medication for it. There is much to be grateful for, so thanks for giving me an extra dose of courage! Hoping you have a good day! Sending a big hug! Michelle. xxoo

Fancy getting the diagnosis on your 60th birthday! Guess it was a positive gift in that the cancer was able to be treated in good time! Certainly not the news anyone wants on their birthday though! So glad you are doing well on the AI and that your reconstruction has been so successful :-) It's great to have the blog, thanks for your input! Have just got my script filled, so here we go, another step on way. Cheers, Michelle.

My understanding is that tamoxifen works for both pre-menopausal and post-menopausal women. It blocks any eostrogen in our bodies from "feeding" the cancer cells. Aromatase inhibitors only work when you are post menopausal. Once your ovaries are no longer producing eostrogren, AIs can prevent any other eostrogen being formed in your body (by fat cells I think). So tamoxifen lets you keep some eostrogen circulating in your body after menopause. This eostrogen helps keep your bones stronger and joints healthier (among other things). However, AIs apparently reduce the risk of recurrannce in post-menopausal women slightly more than tamxofen does. Also, AIs don't carry the small increased risk of edometrial/uterine cancer associated with tamoxifen. So there are pros and cons with both treatments. Despite not having had a period for a year now - making me menopausal - I have decided to stick with tamoxifen because it is not causing me any major side-effects and I feel that at 47 I want to hold onto whatever eostrogen I have left. I am scared that AIs will be a fast-track to a sexless old-age with brittle bones and achey joints. While my onocologist has suggested switching to an AI she was not particularly concerned when I said no to it. Perhaps I will switch when I am a bit older but for now I am okay with tamoxifen. Good luck with your decision Michelle, I hope all goes smoothly for you.

Decisions | BCNA Online Network

30 Replies

Janey235
Member
12 years ago
Yes I still have numbness across the scarline and naval area even after six months. I don't think that will ever go away completely. (I had a knee reconstruction 25 years ago and the scar is still numb). A lot of nerves have to be severed and they don't normally regenerate. Sometimes small nerve clusters regain some feeling but my Plastic Surgeon informs me that this is not the norm. The same thing with the reconstructed breasts, they don't have any feeling and it is quite weird but I'm getting used to it.

I had both breasts removed and reconstructed at the same time so I can't really answer your question about whether your other breast will be orgmented to match your mastecomy side. I believe that this is the case when you only have the one done and you can work that out with your PS. I had the two tumours and extensive DCIS in my left breast but I decided I wanted a prophylactic (preventative) removal of my right breast because I knew I would worry (probably for the rest of my life) about cancer in that breast and I didn't want to ever go through BC again. One of the deciding factors for me is that if I only had one breast removed by the tissue transfer method (TRAM/DIEP) and if I did have to have my right breast removed in the future, I could not do it by that method again. I would have to have an implant and that was definitely out of the question for me and, after researching, I believe that it is harder to achieve symmetry by using different methods. I am very happy with the results of my surgery. My new breasts are soft and warm and very natural looking. All I'm waiting for now is nipples and I will be complete :)

I am wishing you good luck with your coming surgery Sue and all the very best for the future.

Love Janey xxx
Janey235
Member
12 years ago
Hi Mat a mataz, It was a purely personal choice that I chose tissue transfer over implants. I wasn't comfortable with the thought of having a foreign object in my body. I wanted to have as much of 'me' left after so much was being taken. I had enough tissue (which is a nice way of saying fat) on my tummy to use so I thought that's the way I would go. I recovered well from the surgery though it was around 4 weeks until I could comfortably lie on my sides and not just on my back. The drains came out before I left hospital so I didn't have to worry about them at home. I'd say that my recovery took about two months to feel relatively normal but I still have tightness and some residual low grade pain. The only problem for me from the surgery was developing DVT in my right calf and then the clots travelled to my lungs. One night I found I couldn't breath too well and I was taken to Emergency where they fixed me up. Not too bad really but I am on daily blood thinners injections until May and then I may be able to go on warfarin or some form of tablet blood thinners. Don't know how long but it's okay. I know they are keeping things under control. It's now just over three months since my surgery and I am feeling fine. The revision surgery will be for some nips and tucks. My plastic surgeon told me that when an immediate reconstruction is performed, as it is a long operation, they concentrate on getting form, that is a breast mound, and don't worry about perfection trying to keep the operation from being too long. They can't tell until the swelling goes down and the wounds are healed how the actual breast and tummy area will look. In my case, I formed seromas under both breasts (a small pocket of fluid) that distorted the shape so my PS will tidy that up and I also have some small puckering on my tummy scar that she'll tidy as well. Apparently it's only day surgery so nothing major. I don't know yet whether she will do nipple recons at the same time or that may be another op further down the track and that is also just a small op too. There are pros and cons for any type of recon and the cons for tissue transfer is obviously a longer operation and recovery time but once I'm finished I will be done and not have to think about it anymore. My breasts are soft and natural, feeling very much like my old ones and they will gain and lose weight as I do. They will also eventually lose their perkiness I guess as is natural but hopefully not for quite a few years yet. I'm not sure whether you've looked at my photo story here but if you haven't, here's the link if you're interested. http://www.bcna.org.au/network/groups/61026/blog/65924. The first photo looks pretty awful but believe me it wasn't as bad as it looked. If you scroll down past some of the comments, I've also posted an updated photo about two months after surgery. You can see that they are very much Improved. You can also see the seromas which make my breast have a point underneath. I hope this all makes sense to you Mat a mataz. Please ask any questions you like. I am more than happy to help if I can. Janey xxx
maz_a_mataz
Member
12 years ago
Hi Janey, thanks for your reply, can I ask why you chose to have the tissue transfer method as opposed to having implants put in? also how long was your recovery from the operation? were ther any side effects? What is revision surgery?

I printed out the info ont he link you gave me, I really appreciate all your advice and support I will ask my surgeon when I see him next week as if they can target where the cancer cellls may be in my lymph nodes then why not do that rather then taking majority of my nodes. I read up on lymphoedma and boy some of the images are a bit scary.

I am so excited for you as well to be able to have the final piece of the puzzle sorted out this year, you know what that will be here before you know it.

I was alot calmer yesterday after my appointment with the surgeon on Tuesday, I am a bit of a stress head/ control freak/ analytical person where I like to have plans for everything so this journey has been interesting for me as I cant plan or predict or think about what may happen until I am there, its definately been a learning curve for me.

thankyou again Mazamataz
LouiseTurner
Member
12 years ago
No worries at all, I have accepted the group request. So make a new post there with your questions and the members can direct you to the info you need and answer any questions you have from their experiences. My story and janeys story are there, we both had tissue transfers, but can direct you to some women who have had implants.

See you in there soon, Louie
Janey235
Member
12 years ago
Yes I did have immediate reconstruction. I had the tissue transfer method, DIEP/TRAM flap. I didn't want to wait as I wasn't sure I could stand not having breasts. It freaked me out really. I know it was a long 10 hour op but I have no regrets. It was a tough recovery but I got through and waiting now for revision surgery and nipples later in the year. Can't wait. Janey xxx
maz_a_mataz
Member
12 years ago
Hi Janey,

thankyou for your message I just finished sending a message to register into the recontruction group so fingers crossed I get accepted.

Also thankyou for the info on sentinal node biopsy, I will definately be asking him next week as why have majority of them removed when I could just have a couple removed.

I think that having the lumpectomy first will give me a good indication on if it has all been removed and also if there are any cancerous lymph nodes in my under arm.

If I may ask did you have the full reconstruction on the same day or did you opt for no reconstruction?

Cheers for the all posts info, I am abit new to all of this so it would be good to get lots of advice.

thanks again mazamataz
maz_a_mataz
Member
12 years ago
Hi Louise,

thank you for your message. The surgeon I saw yesterday was a breast surgeon. He was definately favouring the option of a lumpectomy.

I had a long discussion with my husband and the breast care nurse and she helped clarify it so much more but because there are so amny what ifs that is what make it confusing and hard to absorb.

The original plan when I firts got my diagnosis was to have chemo firstto shrink the lump, then followed by a lumpectomy and radiation afterwards to clear up any other cells and prevent it from coming back.

When I went in yesterday the surgeon and nurse were saying to have the lumpectomy, then my lymph nodes removed. Two weeks after I will find out if all the cancer is removed and if there were any cancer cells in my lymph nodes. If the cancer is all removed then I have to have radiation 6 weeks after surgey. If the cancer isnt all removed and there is less then three lymph nodes that are cancerous then I would want to have a double mastectomy and reconstruction done in one session and would be able to as there would be no need for radiation. If there are more then four lymph nodes that are cancerous and they havent removed all the cancer are you saying that I could still have a prosthesis inserted (to make it look like I havent lost my breats) while I am having radiotherapy? then have them removed and have the implants inserted?.

Was the recovery rate for yourself a long time for your mastectomy and reconstruction?

So you had it all completed (mastectomy and reconstruction) on one day then three months later had nipples inserted? what do you mean by revisit. How many surgeries in total have you had after your first intial mastectomy?

Thankyou for all your advice you have helped clear some concerns

sorry to ask soo many questions I hope you dont mind

I'll have a look at that website on reconstruction, I'm not on facebook though but thanks for thinking of me

mazamataz
Janey235
Member
12 years ago
Louie has given you some great advice, wonderful lady that she is. I was the first to join the group that she facilitates and I highly recommend joining. There is a lot of information from ladies who have gone through what you are about to embark on, different reconstruction procedures and you could chat to ladies who have had delayed recon too. Originally I had a lumpectomy with 6 weeks of radiation scheduled after that. Although the lumpectomy successfully removed my two lumps with clear margins, there was extension DCIS left in my breast (pre cancer cells) and my surgeon strongly recommended a mastectomy. Radiation was ruled out but I needed chemo instead. I think it all depends on your lumpectomy results as to what plan of action is then set in place. Has your surgeon talked to you about a Sentinal Node Biospy rather than a full clearance? If not ask him about it. It's a procedure that pinpoints where the cancer is most likely to go from your breast and it reduces the risk of lymphoedema. Here's a link to the Westmead Breast Cancer Institute brochure that BCNA has on their website. http://www.bci.org.au/images/stories/about_bc/factsheets/factsheets2013/BCI_Sentinel_Node_2013_WEB.pdf. It may not be what your case requires but worth asking about. I had it and only had to have two lymph nodes removed and both were clear. Maz a mataz, you may also like to post your questions on the ALL POSTS section so that more ladies get to see them, not just those of us that have responded to Michelle's original post. Like Louie, I hope I haven't confused you too much. Wishing you all the best with your surgery. Love Janey xxx
Janey235
Member
12 years ago
Louie has given you some great advice, wonderful lady that she is. I was the first to join the group that she facilitates and I highly recommend joining. There is a lot of information from ladies who have gone through what you are about to embark on, different reconstruction procedures and you could chat to ladies who have had delayed recon too. Originally I had a lumpectomy with 6 weeks of radiation scheduled after that. Although the lumpectomy successfully removed my two lumps with clear margins, there was extension DCIS left in my breast (pre cancer cells) and my surgeon strongly recommended a mastectomy. Radiation was ruled out but I needed chemo instead. I think it all depends on your lumpectomy results as to what plan of action is then set in place. Has your surgeon talked to you about a Sentinal Node Biospy rather than a full clearance? If not ask him about it. It's a procedure that pinpoints where the cancer is most likely to go from your breast and it reduces the risk of lymphoedema. Here's a link to the Westmead Breast Cancer Institute brochure that BCNA has on their website. http://www.bci.org.au/images/stories/about_bc/factsheets/factsheets2013/BCI_Sentinel_Node_2013_WEB.pdf. It may not be what your case requires but worth asking about. I had it and only had to have two lymph nodes removed and both were clear. Maz a mataz, you may also like to post your questions on the ALL POSTS section so that more ladies get to see them, not just those of us that have responded to Michelle's original post. Like Louie, I hope I haven't confused you too much. Wishing you all the best with your surgery. Love Janey xxx
LouiseTurner
Member
12 years ago
Hi again, being just 29 you might be interested in the Facebook group 'Young Women with Breast Cancer http://www.bcna.org.au/group/61282, or Young Pink Sisters http://www.bcna.org.au/group/5157. They are fairly action packed groups...cheers Louie