Posted by kavitha on 27 Feb 2013, 08:26PM
Hi,
I found out today that my mum has been diagnosed with about 3cm, Stage 2, TNBC on her left breast. It has spread to her lymph nodes and to her armpit. She is 63y old. The oncologist has suggested 1) mastectomy with chemo if applicable 2) lumpectomy with chemo & radio 3) breast reconstruction. He is going 50/50 with options 1 & 2.
I would like some advice on where to from here. Any advice on if option 1 or 2? I am leaning towards mastectomy and am thinking if she should do mastectomy of both breasts eventhough no cancer has been detected on her right breast. Should I get another doctor's opinion?
I would like to keep my mum well informed of her options. So any advice or experience would be helpful.
Thanks lots!
Comments
TNBC
I had a lumpectomy for a stage 2 TNBC followed by 4 cycles of chemo and then 6 1/2 weeks of radiation. I had no lymph involvement. I made the decision to treat this aggressively as these TNBC seem to have quite a high recurrence rate. The TNBC site on here is very good. There is a good English TNBC booklet that I downloaded as well. I am nearly 12 months from my surgery. Wishing your mum all the best .
Thank you
Thank you so much for sharing your views. May I know where to download the booklet that you mentioned?
Happy to hear that you are well.
Lots of love,
Kavitha
Hi Kavitha
So sorry to hear about your mum's bc diagnosis but welcome to this network. I've had breast cancer twice in the same breast.In 2003 I had a lumpectomy and full node clearance followed by radiation.My nodes were all clear and my cancer was 2cm eostrogen +ve so didn't have chemo. Seven years later it came back in the same spot- there is about an 8% chance this can happen. The cancer had grown to 3cm in a year.I had a mastectomy and chemo and now on Tamoxifen.I am fine now- 3yrs in April. My friend had tnbc and had a lumpectomy and radiation and cancer came back in the same spot for her 2 years later.It's a difficult decision to make and all you can do is get the facts and statistics then go with what feels right for your mum.If she has radiation then she may be limited to what type of reconstruction she can have later should the cancer come back in the same breast.Have you ordered"my journey"kit from BCNA yet?It has lots of helpful info and it's free. If you are not 100% confident with your doctor then get a second opinion.Blog back here for support and information.
sending hugs to you and your mum,Tonya xx
Thank you
Thank you so much for sharing your experiences. Yes, I ordered the "My journes kit" yesterday and they said it would take about 5-7 days to arrive. Will it contain statistics or facts on the implications of each type of tretament and the recurrence rates?
Is there any website/booklet that I can download to get some of these figures?
Thank you. Hope your friend and you are well.
Lots of love,
Kavitha
Hi again
Your mum's surgeon or oncologist can only give you generalized stats for now.Once surgery is done then they will get indepth pathology results and can plan individual treatment. You won't get detailed stats from booklets but rather statements such as: survival from a lumpectomy is the same as for a mastectomy.Back in 2003 with my first bc,I had to decide whether to have sentinal nodes taken or a full node clearance.My surgeon did a calculation based on the size of my cancer from the ultrasound(2cm) and came up with 60% chance it had gone to lymph nodes.She advised she should take them all and you know what - NO cancer cells in any of the 18 nodes! Statistics are a tool to help make decisions sometimes but they shouldn't be taken as gospel.I had to wait 2 weeks before surgery the first time and 3 weeks the second time.That's about usual. If you and your mum are still unsure which surgery to have then just keep asking your doctor questions,keep researching and soon you will get a feel for what is right for your mum.We are all different and what feels right for one women may not for another.It's probably easier when you don't get a choice.
Tonya xx
Hi Kavitha
I am so sorry to hear about your mum, and so glad you have found this site, which will be a big comfort to you both as the months pass.
Like your mum, I had TNBC in the left breast, stage 2, grade 3 - but no node involvement. I opted for a double mastectomy, followed by chemo and radiation - I just wanted to blitz the beast with everything available. It is now almost a year later and I have progressed to 6-month check-ups with my Oncologist. The surgery was much easier than I had anticipated, and with the physio exercises I have full movement and minimal scarring. Just wanted your mum to know that if she decides on this option it is very do-able. I have never regretted the choice for one minute.
As Tonya said, the My Journey kit is a must-have, so do order one for your mum. It also helps to keep all her records and appointments straight. Whatever your decision, keep in touch and let us know how your mum is travelling. Big hugs to you both,
Michelle xx
Thank you
Thank you so much for sharing your views. I am relieved to hear that the surgery is not that bad and really happy to hear that you are doing well.
My mum is a bit anxious of doing a double mastectomy. I guess it is due to the sudden thought of not having both her breasts. Is there a special bra that she could wear that might still make her look like she has breasts when she wears her clothes? I would like to make her feel at ease that it is not that bad.
Was the chemo and radiation a must after a double mastectomy? The doctor told us that he can only decide after he removes the tumour on whether she needs chemo and said she would not need radio.
After you recieved the news, how long did you wait before having the surgery? Since the earliest the doctor can do the surgery is on 21st march, I am a bit concerned as to if we can wait or try and do it earlier.
Thank you so much once again for sharing! I feel a bit better to be able to share my concerns.
Please keep me informed of your health as well. Wish you all the best!
Lots of love,
Kavitha
My surgery timing
Hi Kavitha,
Your surgeon and medical oncologist will decide together which road to go regarding chemo after your mum's surgery (either type), and then you will have much more information. Radiation isn't always suggested, but my Medical Oncologist wanted to blitz the cancer while it was down, after chemo, and I agreed with him. It will be a personal decision between your mum and the Radiation Oncologist. (Yes - GP, Surgeon, Medical Oncologist, Radiation Oncologist!)
The surgeon's nurse will also be able to order a special free bra from Berlei with soft filling to wear after surgery, so your mum will have breasts (for clothes) as soon as she heals. After that, the government repays the cost of prostheses up to $400 each breast, every 2 years, and this is all explained in your My Journey kit, or in fact sheets from your local Cancer Council. Myer does fittings for prostheses and so does DJ's and some bra shops. There is also heaps of information about reconstruction on this site if your mum wants it.
To answer your question about time, my surgery was 16 days after being diagnosed, as Easter fell right in the middle and everyone was away. It didn't make a scrap of difference, so don't worry yourself about it - the cancer has been there for quite a while already and a few days more won't count.
Try just to cope with one day at a time, and don't look too far ahead - it will all happen quite quickly once it starts, so just go with the flow and try not to stress too much. Meditation tapes help and the Cancer Council will probably send you one with all their information sheets. Hope this helps - Michelle xx
Booklet
The website isTNBCfoundation.org . I downloaded the booklet to my iPad and referenced it when I needed. BCNA also has a good TNBC information sheet as well.
Urgent
Hi ladies,
I am in a bit of a rush for time now. My mum had her 2nd opinion today and the doctore said that he would recommend a PET scan just to see if there is any metastasis. He could do the test tomorrow and have the results by tomorrow afternoon.
I also need to tell my earlier doctor by today if we want to go ahead with the surgery this thursday which is the earliest he could give us.
Have anyone of u been recommended for a PET scan? I understand that it is uncommon but if you have could you please advise me on why it was recommended? And what are the implications for it?
Thank you so much!
Sorry I don't know anything about PET scan. I had TNBC and initially had lumpectomy followed by mastectomy due to margins not being clear. My surgeon saw no reason to remove other breast though. I have a prosthesis which looks quite normal and will have reconstruction later this year. I had chemo and radiation due to it being TNBC, after the surgery. It's 13 months since my diagnosis and physically I'm doing well. Mentally it's still tough. I wish your Mum all the best.
Tammy
PET Scan
Hi,
I had a PET scan after my TNBC diagnosis. Its a good thing as it can detect very small tumours. Luckily none were detected but it helped my Oncologist plan my treatment knowing that the cancer hadn't spread. The only bad thing is that they are not covered by Medicare!!! I astually negotiated a cheaper price so it doesn't hurt to try and haggle!
The TNBC.org site in America is a great resource. So is Cancer Council. They can match your mum up with another lady who has had a similar diagnosis and she will offer phone support. This is through their Cancer Connect program. Dial the 131 number and ask for Cancer Connect.
I opted for a bi lateral mastectomy as I had a recurrence. My surgeon had no problem with this. I intended to have reconstruction but not for at least a year afterwards so I could heal and explore my options. I'm glad I did. It gave me time to find the best Plastic Surgeon and the best option for me.
I joined support groups and talked with many women in the same boat as me. It really helps to meet other women who have had BC. Look on this web site and also Cancer Council's for the name of support groups in your area.
You're a good daughter! All the best to your mum.
Diane