Looking for a bit of advice from anyone who has had to make this kind of decision.
I was initially diagnosed with Grade 2 IDC, ER+, PR+ and HER2 negative last month with no lymph node involvement seen (lump seen on mammogram/ultrasound, not palpable). Subsequent to this an MRI was done due to the density of my breast tissue as a result of my questioning this point. This uncovered another tiny area for which I received the biopsy result this week (histology is identical to the previous). The initial treatment plan was for a SLNB + single lumpectomy, which then changed to 2 lumpectomies on the day of the second biopsy, and upon receiving the second biopsy result it has now changed to a Mastectomy.
So, it has been a bit of a roller coaster for me this week, trying to digest the reasoning for the changes, and also now needing to make a decision between a Mastectomy with immediate reconstruction vs. delayed reconstruction vs. no reconstruction (last was not mentioned but assumed).
The preliminary options that were presented to me are SLNB + :
Mastectomy with delayed reconstruction – two weeks for recovery, with reconstruction 6-12 months later (delay between the Mastectomy and Reconstruction due to healing time after radiotherapy treatment).
Mastectomy with immediate reconstruction:
Implant – 4 weeks recovery
LD Flap (Back flap) – 6 weeks recovery
DIEP Flap (Abdominal flap) – 8 to 12 weeks recovery
As I have sensitive skin, & have previously has a skin allergy to silicone gel pads in an elbow brace (and also do not like the idea of having a silicone implant), I have eliminated option 2a. from those available for consideration.
I’m having a difficult time deciding and am trying to put together a pro’s and con’s list for each and also gather information about them as I need to understand the detail behind each option before I decide.
These are the questions I have at the moment:
When considering Option 2b./2c. I understand that there will always be a delay associated with meeting the plastic surgeon, then to have the necessary CT scan & other diagnostic tests needed. I was told that if I chose either of those, I would be given an endocrine treatment (Tamoxifen/Letrozole) until (x number of weeks) before the op date (blood clot risk), to stop the growth of the cancer. Has anyone else been through this path and if so, were there any drawbacks to that choice due to taking the endocrine treatment (which I understand is typically taken to stop recurrence post-surgery/radiotherapy)?
When considering Option 2b./2c. could a plastic surgeon immediately tell if I’m not a candidate for one or the other based on my body shape/fat? I ask this question as my surgeon made a vague comment about me not having much tummy fat/slight during the last clinical exam.
Is there any instance where delayed reconstruction would be advised by a plastic surgeon after examining me due to the above reason(s)?
Other than the obvious delay, what are the drawbacks of going down the delayed reconstruction route? Are there any associated with having radiotherapy before reconstruction?
I’m unlikely to get an appointment to see the plastic surgeon for another 3-4 weeks, so am partially concerned that my treatment will be delayed if I go down the immediate reconstruction route. I feel getting rid of the cancer, should ultimately be my primary goal. But at the same time, I want to be informed about the reconstruction options that would be viable/not viable for me. I have this internal mental tug-of-war going on at the moment, which is frustrating and making me feel emotional.
Appreciate any advice & information fellow members have to offer.
I had a lot of your same questions and issues when I was diagnosed. I initially wanted a mastectomy/diep all at one time but couldn’t get into the plastic surgeon’s office for over a month. Although it didn’t appear that my situation was urgent neither me nor my oncologist was comfortable waiting. In the US we like to do surgery asap if we feel surgery is the first step. I asked about going on endocrine therapy while waiting but my oncologist was against the idea. Her reasoning was that it would distort the results of the oncotype test and they wanted to make sure they had accurate results so that they could do accurate treatment. So I ended up doing a delayed DIEP. The positive of that was quick healing from the double mastectomy and when my oncotype results came back recommending chemo I could immediately start. My first chemo was exactly one month after my initial surgery and I was quite recovered enough for it. The bad thing is that I had to do another crappy surgery and by the time I was done with chemo and had started endocrine therapy I was pretty much done. I really struggled with wanting to go down the surgical route again just because I didn’t want to deal with yet another recovery period. But I also didn’t want to put off my reconstruction. It would hang over my head if I did and since flat wasn’t an option I was comfortable staying with, I decided to just get it over with. I was right in what I expected in that the surgery sucked and recovery is a drag. But it’s not overly painful and I am actually doing quite well a week and a half out. I’m just impatient with it all. I could do more if I wanted to but my doctors told me to sit my rear down and I’m trying to follow their direction despite being bored out of my mind. However, nobody expects an 8 week recovery for me. I am 48 and they told me three weeks for most people before they could return to normal life as they felt ready for it. I can’t do any abdominal exercise for at least 9 months but that’s the only restriction I’ll have. And I fully expect to be recovered enough to be released at three weeks. Shoot I feel pretty decent right now a week and a half in. My stomach is swollen still but I’m taking 4 tylenols a day and that’s it. Hopefully I’ll get the last of my drains out on Tuesday but if not, they’ll come out the week after I’m sure. Recovery has been boring but pain has been well under control. Also, I wasn’t overweight and could still do a DIEP. I think they need at least 19 BMI. They need fat but they don’t have to have a lot.
Hi I had a lumpectomy in December but unfortunately didn’t get any clear margins so had a right side mastectomy 4 weeks ago. I did want immediate implant reconstruction as don’t have enough tissue for diep recon, but my surgeon didn’t recommend it and wouldn’t do it because of the effects of radiotherapy that I need to have on an implant reconstruction. He did say that the risk of complications after radiotherapy on your own tissue is less though. It just depends on what is important to you. All these decisions are so hard to make and I wish you all the best in making yours.
I’ve just joined the forum having been diagnosed with local recurrence 5 years after G2 with negative SLNB & radiotherapy. I’m awaiting scan results but assuming clear I will be offered mastectomy & all the reconstruction options you described with the same questions in my mind. I’m not keen on implant & not worried about having delayed reconstruction. Just wondered how you made the decision and how you got on?
Hi @Alik, It’s been a while since I posted a reply to this topic. I hope you are recovering well in this journey. I was wondering if you would have any hints, tips to share about either preparing for or managing/minimising side effects of chest wall radiotherapy if you have completed that step, as I am at that preparation stage now. I’ve been searching to find experiences from others who may have had chest wall radiotherapy and noticed that you may have.
Im good thank you hope you’re doing well. I did have 5 days radiotherapy to the chest wall and have been ok, apart from being very pink on occasions, while going through it I kept well hydrated and moisturised with aveeno skin relief and used aveeno wash in the shower. I was a bit obsessed with moisturising to be honest at least four times a day even put some on if I woke in the night to go to the bathroom ?.
If you can keep your bra off that helps. But I still worked when going through treatment so I found a soft cotton handkerchief underneath my bra helped.
As the weeks have gone on different parts of the area become pink then settled down again which is really strange. I’ve started putting Aloe Vera on as well before I put the aveeno on but I’m now down to twice a day and that’s seven weeks from finishing treatment.
Keep up with your stretching exercises as the skin does tighten up a little.
Hope it goes well for you and if you’ve got anymore questions I’ll be happy to help if I can.
@Alik it’s good to hear you are doing well and also that you have managed well with the radiotherapy treatment. Did you have to do the breath hold as well? I’ve been told I’ll need to, because its the left side; at the moment I’m not sure how I’ll get on with that part.
I was also wondering about the 5 vs. 15 days of rads. Were you given a choice of which you would prefer? Or did they just offer you the 5 day option with no decision to make?
I have been wondering about how to protect my skin as it is generally sensitive anyway; it’s good to hear yours is settling down now after several weeks - I guess it’s difficult to predict other than prepare with lots of moisturising ? & hydration; I have been massaging my scar area using aveeno over the last couple of weeks to try and soften the scar tissue as I developed some cording after my axillary surgery which limited my range of arm movement. And still doing variations of physio stretches because of that, so guessing that’s probably a good thing in preparation for rads as well.
I have been wearing bamboo cotton bra’s with a softy since surgery, which have been very comfy. Hopefully I’ll be able to continue with the same with rads.
I didn’t have to do the breath hold technique as they were treating the right side. I’m sure that when you have your planning they will go through that with you so try not to worry. All the staff at my hospital were all lovely and make you feel at ease and were happy to answer any questions. When do you go for your planning appointment?
I was only offered the 5 days and I think if your only having the chest wall treated that is pretty standard, they did a trail to see if the 5 days is as affective as the 15 and the results were good ,so I think this is why its been changed, but ask that question to put your mind at rest.
Sorry to hear that you’ve had to have the axillary surgery and have developed cording, I’m still have my cording as well so still doing the stretching exercises too, pretty fed up with them now, but needs must.
It’s good that you’ve got a good comfy bra, can I ask where you got those from?
Hi Alik, thanks, I’m making a note of questions for my planning appointment which is in just over a weeks time.
I hope your cording is getting better with exercises; for me what made the difference was seeing a physio who managed to stretch and pop some of the really tight areas, since then I’ve managed to keep my arm moving and continuing to do exercises, but am varying the stretches as the physio advised; those that were in the original post-surgery exercise sheet aren’t really effective at this point in time, as they are effectively too easy and don’t target the tight areas - its been a self discovery of sorts pinpointing affected areas as they change, holding onto a door frame to stretch my arm out in angles where I feel the greatest extension and tightness. That last bit has made all the difference as well as some sideway overhead arm extensions, which I’ve tried myself.
I bought the bamboo bra’s from a TXMax; just happened to stumble across them while in-store for something else before my surgery. They are actually more like braletts & look a bit like crop tops, but with adjustable rear hooks, the brand was DKNY.