Posted by TT53 on Sep 5, 2019 10:52 am
yesterday I had an appointment with my surgeon, and after a second surgery, I still don't have clear margins. So the decision now is another lumpectomy or mastectomy. I know everyone in the health care system is very understanding and helpful, but the rollercoaster is sooo hard. this is hard enough without more hiccups. I was hoping to be able to move to the next step in my journey, but it seems like I am still stuck at the first step. Has anyone had to deal with the same or similar situation as me? It might be that I have a number of small tumors scattered thru the whole breast. Just confused that it did not show on the mammogram.
Going back to the surgeon on Monday to see what other options might be available to me.
thanks everyone for listening to me ranting on..........
Posted by Nan1 on Sep 5, 2019 11:26 am
I can feel your anxiety because I feel the same way. You have to decide what is best for you as each situation is different. You can get through this..there has been great strides made in fighting this disease..you are your best advocate.
Posted by Nan1 on Sep 5, 2019 12:56 pm
Posted by Runner Girl on Sep 5, 2019 1:00 pm
I'm sorry you are having such trouble with getting clean margins. I can understand it would be very frustrating to face yet another surgery to correct that.
After I had my lumpectomy in May 2018, my surgeon told me my margins were all clear. I completed chemo and then I met my radiation oncologist in December, 2018, who told me my margins were not great. He sent me back to the surgeon to see if he'd do a second surgery. Because I'm so thin another surgery was not an option, he'd have to remove skin and muscle tissue. So the radiation oncologist instead gave me 16 days of whole breast radiation and then 5 days of "boost" radiation. This boost was focused on the tumor bed to kill anything that might have been lingering there. My followup ultrasound shows the tumor bed is clear.
I'm going to tag Kims1961 as I believe she had a second surgery and opted for mastectomy. She was my go to person last year going thru my journey, a fabulous source of information and ideas.
Posted by Kims1961 on Sep 5, 2019 5:09 pm
RIght from the start, I opted for bilateral mastectomy. I felt my breasts had "done their time" and was just as happy to let them go. Thankfully I had a wonderful understanding surgeon. At 56, I was able to say good bye to them.
Even going the bilateral route - they couldn't get clear margins. I met with the surgeon again about another surgery but from their perspective, it would be like finding " a needle in a haystack" so I didn't have another surgery option. That meant I was off to chemo and radiation. I had really hoped that by doing the bilateral, chemo and radiation wouldn't be necessary - but no such luck. That being said, treatment - although it has its ups and downs - was not nearly as horrendous as I had imagined it. My oncologist said - Give us a year....and that is what I did.
I wonder if it would be worth asking what are the pros/ cons of another surgery? Are they hoping to avoid chemo or radiation if they can get clear margins? Do you have the pathology report back yet?
You are so right...the waiting is difficult...but you will get through this. You've already done an important first step. Keep asking questions and we are here for you!! Kim
Posted by TT53 on Sep 5, 2019 6:28 pm
How did you decide to do bilateral mastectomy? Did you have any problems after?
Thank you for your input.
Posted by Notdeadyet on Sep 6, 2019 7:20 pm
Posted by Kims1961 on Sep 7, 2019 10:10 am
TT53 I think the moment i was diagnosed with IDC, I decided to do a bilateral mastectomy . I also worried it may be a "knee jerk" reaction so definitely listened to all of the input from my doctors and surgeon. I discussed my decision with my surgeon and why I wanted bilateral - so felt well informed with the decision and also trusted my gut. Recovery wasn't too bad - pain was manageable - just the drains made bathing tricky and i just wanted a shower!!!! Once the drains were out , I had numbing from where my breasts were. Not painful, just the nerve endings were cut so it took me a while to be able to "feel" my chest again. Not painful though.
So glad you are asking questions! It also helps many others who may be just following the posts.
Notdeadyet ....great username - reminds me of a Monty Python skit! Your birthday!!! Happy belated birthday. I hope they sang Happy Birthday to you .
Posted by TT53 on Sep 10, 2019 10:59 am
So my decision will be to try another lumpectomy or a mastectomy. If I have another lumpectomy and they do not get clear margins, I have to have mastectomy, so I am wondering should I just bite the bullet and do the mastectomy. My family is telling me that there are so many side effects with mastectomy to really think this thru, but in my head, this is what I am leaning to. It is a hard decision to make and I am wondering how other women came to that decision. Any ideas and suggestions appreciated.
Posted by LPPK on Sep 10, 2019 5:41 pm
Posted by ashcon on Sep 11, 2019 3:10 pm
Wow this must be the month for "lumpectomy vs mastectomy" decision making! I hope you have been reading the other conversations going on lately on this topic.
I am a double mastectomy, no reconstruction kinda gal and don't regret it for many of the same reasons as mentioned by Kims1961 and Notdeadyet .
The only side effects I have is as a result of the removal of my lymph nodes (25 nodes were removed). I have a mild case of lymphedema and have to wear compression garments and do decongestive lymph therapy and exercise every day to keep it from getting worse. But I've gotten used to that.
You are lucky in that lymph node removal does not sound like something you will have to go through, correct?
Aside from that, no other side effects from my double mastectomy. A few bonuses, in fact: I am saving money on bras and don't ever have to have a mammogram again!
Humour aside....What side effects are your family members suggesting? Are they thinking of side effects from reconstructive surgery, if you go that route?
Posted by Notdeadyet on Sep 11, 2019 4:54 pm
Posted by Runner Girl on Sep 11, 2019 5:03 pm
I am on Tamoxifen, started December 3rd, 2018. I wasn't so lucky, I had chemo, radiation and a year of Herceptin. My side effects are wicked hot flashes, muscle and joint pain and a little hair thinning.
I'm so happy for You!
Posted by Notdeadyet on Sep 11, 2019 5:11 pm
We are all allowed to be different so do what feels right for you. Your body. Your life.
Posted by cancertakesflight on Sep 11, 2019 11:14 pm
As LPPK said, I had a mastectomy. My surgery was in 2011. I had one breast removed and 22 lymph nodes. Two sentinel nodes were positive for cancer, but none of the ones under my arm. I had a mastectomy, chemo, and radiation. I also took Tamoxifen for 7 years.
For me, I didn't really have any choice about whether I wanted a lumpectomy or a mastectomy. While I had DCIS, it was wide spread (at least a quarter of my breast) so there was no breast conserving surgery for me. As for having one versus two breasts removed, I didn't do it because it never occurred to me and no one suggested it. Luckily, my margins were clear and I didn't have to have a second surgery. Sometimes I wonder if I should have had both breasts removed. The density of my remaining breast seemed to change after chemo and starting Tamoxifen so I still struggle with what is 'normal' for that breast. It's also lumpy, which makes for some stress. Each time I have a mammogram, everything is normal.
I didn't have any side effects from my mastectomy. Everything went well. In fact, I have received more compliments about my scar and my hair (wig) than I have received about my real breast(s) and my actual hair. It was like I could do no wrong.
I don't know what I would have done if someone had mentioned that I could potentially have both breasts removed. As everyone has said, it's a personal decision.
Posted by Minus2 on Sep 12, 2019 7:43 am
In May 2016 I was recommended for bilateral mastectomies with immediate implant reconstruction following a diagnosis of DCIS and IDC. The DCIS was extensive on the right side, the IDC was 2.0 cm also on the right, and the DCIS was small on the left. Bilateral mastectomies were recommended because aesthetically, the surgeon felt I would be happier if the girls looked like twins instead of sisters. Imaging indicated Stage 1 so the initial plan did not include chemo or radiation. Then after surgery, one margin on my right side was close, specific to the DCIS. At 6 weeks post op, when I received the surgical pathology report, I learned about the close margin and was referred to both a medical oncologist to discuss chemotherapy and a radiation oncologist to discuss radiation. My head went to a very dark place because of the abrupt change in possible treatment plans. As it turns out, my OncotypeDX score was very low, so no chemotherapy. And upon review, my radiation oncologist felt radiation would be overkill, so we didn't do that either. I found it helpful to develop a T-chart with the pros and cons of each treatment decision to help me with choices and to have a record if I ever second guessed my decisions. Once you do make a decision, do not look back. Be confident in your choices and move forward, even if it's baby steps.
As for side effects from the mastectomies, I don't have any to report really. My surgeon was able to save my nipples, so I have a scar under each breast but you have to look for it. It is concealed and it has healed to a thin white line. The implants sit under the pec muscles, so my first game of golf was interesting as I used the muscles across my chest, but I'm used to it now. I had 2 lymph nodes removed from each side and they were clear, so no lymphedema has occurred.
Each treatment plan carries the potential for side effects and unfortunately, there is not really any way to determine who will definitely develop side effects and who will not. You have to weigh the pros and cons in combination with your personal history and keep the long term goal of being alive in mind.
I wish you well as you deliberate. If you have any questions about the factors I considered in not pursuing radiation, ask away.
Posted by ng_minus1 on Sep 12, 2019 8:49 am
I had a simple left mastectomy and sentinel node biopsy May 31, 2019. I did not have an option as I had DCIS and IDC in two opposite areas of the left breast. I was not offered the option to remove the other breast and I did not even think to ask about it at the time. I would have seriously considered it.
Surgery went very well, much better than I expected. I did not opt for reconstruction. I know I have to be careful in wearing the weighted breast form as often as I can to prevent the spine issues and keep exercising, but other than that, I am pleased with the results.
Good luck and let us know what you decide!
Great news Notdeadyet,! I am in a similar situation. Clear margins, clear lymph nodes and no chemo or radiation needed - I felt extremely lucky!
I have started on tamoxifen middle of August 2019 - just finished the first 30 pills. So far I am experiencing mild hot flushes, my hair seems thinner and some tiredness.
I also had one incident of mood change - it was a bit extreme but managed to snapped out of it when I realized the humour of the situation.
I am sure more side effects will pop out in the future but for now is not bad at all.
Wish you good luck in your journey!
Posted by TT53 on Sep 12, 2019 8:56 am
Thank you for your message. What I am struggling with is that mammogram does not show the cancer, or they missed it. I was very confident in the process and now I have lost that. I want to give myself the best chance of survival and that is why the mastectomy. they have gone in now two times and still no clear margins. They keep telling me that I am stage 1 and grade 2 and no lymph node involvement, so I have time to make my decision. I am currently waiting for an MRI hopefully to get clarity about the location of the IDC and DCIS. Thank you all for all your information.
Posted by ng_minus1 on Sep 12, 2019 9:17 am
I completely understand the no confidence feeling - in my situation the IDC (2.1 cm tumour) was not seen in the mammogram, but they saw something suspicious during the ultrasound - behind a cyst. And the DCIS was not seen on the ultrasound but was seen in the mammogram.
I hope you are scheduled for the MRI soon - will be thinking of you!