Mast. with Reconstruction

sling99

Hi ladies, I am new to the forums. I was recently diagnosed with IDC in left breast and still waiting for biopsy results in right breast. It is looks like I will be getting a mastectomy maybe even bi-lateral. I will be getting the surgery at Sunnybrook in Toronto and I'm considering getting immediate reconstruction with TE/implants. Anyone else had their surgery at Sunnybrook? The plastic surgeon I met seems quite young. How long do they keep you in the hospital? Do they give you a mastectomy camisole that I see other people writing about? After you get home do they arrange for a nurse to do home visits and for the first week or so? Where exactly do these drains hang out of your body? How much pain am I going have and for how long. This is all so scary for me. Any input/advice welcomed. This site has been a great resource for information. Hope everyone's treatment goes well.

Abbey11

Hi Sling,

I'm not in Canada so I can't answer your questions about Sunnybrook, but I'll try to answer some of your other questions.

First, about the young plastic surgeon...I also had a surgeon who looked like he was about twelve!  This really worried me and I asked him how many of these TE/implant procedures he had done.  He estimated about 300, which made me feel better.  I think it's a fair question to ask.  Also, when I mentioned my concern to a nurse friend she said that as long as he'd done enough procedures to become proficient, she rather have "young hands" working on her.

Hospital stay - I was in the hospital two nights after my bilateral mast.  They would have sent me home after one, but I just felt awful and was having lots of problems with pain.  I just basically refused to leave so they kept me for another night.

Drains - I had a drain on each side.  The tube comes out of your side about 4 or 5 inches below your armpit.  I was given a post surgical bra and kept the drains looped up and attached to it with safety pins.  When I showered, I attached the drains to a lanyard around my neck.  My drains came out after about 9 days.  The more you rest and sit still, the sooner the drainage slows down.  If you're really active after the surgery, you are likely to drain more.

Pain - I had a lot of problems with pain and took pain meds for a month after my surgery.  However, this is NOT typical.  I think most women take pain meds for a week or two.  My nurse friend kept telling me to take the pain pills.  She said "you can't heal if you hurt."  I though it was good advice.

I hope someone comes on soon and answers your other questions.  I'm so sorry you're going through this and encourage you continue to come here for support and answers.  It's been such a helpful site for me.   Best of luck to you!

Anonymous

Hi sling99

I am so sorry you have found yourself here because you have been diagnosed with breast cancer,  but I am also glad that you have found this forum.  It is a wealth of information and compassion and understanding from women who have been there.

I recently (Jan 12) had bilateral mastectomy at Sunnybrook in Toronto. I did not have immediate reconstruction as it was going to be too difficult to coordinate surgeons and not knowing if I was going to need chemo. So I can only speak for bilateral mastectomy part. I spent one night in hospital, in the short stay unit.  They do not provide you with a camisole, so you will want to arrange to purchase before you go in. I had purchased one that you step into, but wished I had bought one that opened at the front.  It just would have been easier to put on and off. They do arrange for CCAC nurse to come in to do home visits, and they came until my drains came out. My drains came out on day 5, but everyone is different. I had two drains and there was one on each side, approx. 6 inches down from armpit. For me personally, it was not painfull, but very uncomfortable.  It felt very tight, like someone wrapped me around the chest in duct tape.  I was given tylenol 3 for pain, but did not like the loopy feeling, so switched to xs tylenol. I am just over 3 weeks out now and each day feels even better than the day previous. I would be more than happy to answer any questions you may have.  This is a very difficult time, but we are all here for you.

Cathy

Kyta

Hi Sling. I'm in Ottawa and had a mast in Dec. Like you, I was diagnosed IDC in left and then because of MRI findings had a biopsy on the right, which thankfully was benign, so had a unilateral.  I stayed 1 night in hospital (in the surgical day unit and left very early the next morning). I only took the pain meds for 2 or 3 days, then the odd one for the next week or so as needed when I went to bed. My drain was about 1 to 2 inches below my armpit and it was removed 5 days post surgery. I didn't have TE/implants, so can't speak to that.

Good luck with everything....I know it's a scary time, but honestly, it gets better after surgery. Take care.

Mantra

Every hospital seems to have their own way of doing things. I had a mastectomy and TE and was sent home two hours after surgery. However, I will be having a prophylactic mastectomy and reconstruction at Princess Margaret and was told I would be staying overnight. Same surgery, different hospital with each having their own way of doing things. I know that being sent home the same day meant I could have the surgery immediately since they did not have to worry about a shortage of beds.

I was not given a camisole and didn't find it was necessary in my case. Perhaps it was because my drain was removed on day 5 and I never left the house during that period. I wasn't given a post surgical bra like some others were.

One tip; if you have a recliner you may find it a lot easier to sleep in it rather than a bed.

I had nursing care come for the first week. I believe they came every day (the cost is covered by the government). They were absolutely wonderful. In fact one night I had a bit of an emergency (my fault) and they came over at midnight! Each time they would clean the area, change the bandage and empty the drain etc. etc. I believe they also provide housekeeping if you book it far enough in advance.  

All in all, it was definitely not the most enjoyable thing I've been through. I found the drains to be somewhat painful but mostly just uncomfortable. I did find the TE painful and for me, it was probably the worst part of it. That said, even with going home the same day, my pain was well controlled with Tramacet and Flexeril. The trick is, to take the medication the minute it is due whether you need it or not. A few times I really was not having any pain and decided to wait . . . big mistake. Much easier to keep the pain under control by taking it before you need it, than waiting until you really need it.

Sunnybrook is supposed to be a wonderful cancer centre.

All of it It is do-able. I personally needed help and my DH and daughters did everything for me which meant I could sleep on my recliner for most of the day. Like most women, removal of the drain was when things started to quickly improve.  My surgery was mid September and I can tell you that by mid December I was back playing golf, working out (cardio and lower body only), biking etc. (live in Florida half a year). But at the beginning I couldn't even bath myself . . . DH litterly had to give me a bath and I had to teach him how to blow dry my hair. Let's just say that he quickly gave up that job and it was passed over to my daughters who used the flat iron to keep the waves under control. Learning to eat with my right hand was not as easy as I anticipated. My family also had to dress me and shirts that button all the way down were the easiest. I pinned my drain tube to the shirt.

That said, I'm going to be going through all of this all over again when I return to Canada in April. At least I know what to expect and know that there is a light at the end of the tunnel. I really didn't find the mastectomy to be painful. The TE were another story  . . . but the pain from it will pass.

Are you having a SNB?

Best of luck with everything.

sling99

Thank you southport, formykids, Mich_M and Mantra for your quick replies. Knowing what to expect is helping to bring my anxiety level down. Thanks for sharing your personal experiences.

Formykids, once you got your diagnosis how long did it take to schedule the surgery? I am worried that they may not be able to coordinate the surgeons to do the mastectomy and reconstruction in a timely manner. Once it became clearer that I would need a mastectomy I let them know that I want to get the rest of my appointments lined up so as not to delay the surgery much longer. But it always takes so long between appointments. I just want the cancer out before it spreads. Can you tell me where you bought the camisole? I would like to take a look at them in case I can't get the immediate reconstruction.

Mantra, I will be having a SNB. How long until you can raise your arms to wash your hair? I may have to start teaching my husband how to blow dry from now. He has no clue how to use a round brush or curling iron

Mantra

Sling99 Yes, the look on DH face when I handed him the round brush and clips to hold back portions of my hair while he dried one section at a time, was priceless. Add to that the instructions on how to actually dry the hair while positioning the round brush was too funny. I think the entire "round brush concept" is completely foreign to men. But you're definitely brave if you're going to let DH use a curling iron on you! Once I saw how inept DH was at using the round brush I wasn't letting him anywhere near me with my flat iron.

I had my SNB when I had my lumpectomy at the beginning of August. I can't recall how long it took until I could freely lift my arm without any pain, but I think it was around 3 or 4 weeks. I know that it was definitely healed by the time I had my mastectomy in mid Sept.

I know it's not always easy to co-ordinate the surgeon and PS. But if it is done separately, you will at least have time to interview PS and find one you are completely comfortable with. Otherwise, things are very rushed because your priority is to have the cancer removed and you sort of just accept whichever PS fits into that schedule. Of course, the alternative is to have multiple surgeries and recoveries. But as someone who rushed things through to get both done at once, I am now paying the price for it. My tissue expander needs to be removed and repositioned. So, all in all, I would have better to waited and done it separately with my first choice of PS.

Anonymous

sling99 I received my diagnosis on November 30, notified them that I was going to do bilateral on Dec 2. I knew I would want to do reconstruction, and would have liked to do immediate, but wasn't even sure what I was a candidate for? I thought then, and still think I would like to do DIEP, but I still haven't even seen Dr Zhong who is one of the few that does it in Toronto. It was seeming impossible to coordinate quickly two surgeons, one for mastectomy and one for reconstruction.  I did get appt to see another plastic surgeon, Dec 21, but he didn't do DIEP.  And even to get him coordinated with my surgical oncologist from Sunnybrook, seemed like I would have to wait a couple of months. I was scared and wanted to get the tumor out.  My medical oncologist recommended dealing with the cancer first and then deal with the reconstruction afterwards. After I met with the plastic surgeon on Dec 21, and he said that if there is any chance of radiation, it would be better to delay reconstruction.  I don't have appt with Dr Zhong until middle of March, and at this point I am still not even sure if I will be doing chemo or not.  (I enrolled yesterday into the TailorX clinical trial, so won't know if I have to do chemo for a couple of weeks). I had the challenge of trying to book things though with Christmas holidays in the mix, which proved very, very frustrating. Hopefully it won't be as challenging for you.

I purchased one cammisole at a Shoppers Home Health store and the other one I ordered online from a company called "Wearease". The one I ordered online, opens at the front with velcro, and I think this would have been better for immediately post op. It took approx. 10 days to get it delivered by mail and cost approx. $74.00 with shipping (not cheap but I thought worth it).

This is such a difficult time sling99, if there is any thing I can help you with or if you have any questions, please don't hesitate to ask.  It is still very raw for me, how this time felt.

Cathy

Mantra

Formykids: Dr. Zhong will be doing my surgery. I'm booked for mid April if everything goes according to plan.

Anonymous

Mantra how long did you have to wait to get your surgery date?

Mantra

Formykids: I delayed my surgical date so I'm not exactly sure when it would have been done had I let them book it on their own time schedule. I saw her in November and I vaguely remember her saying she was booking for February/March;but I can't remember for sure. I just know she was all too happy to delay my surgery until April considering two different surgeons need to co-ordinate their schedules. I'm also signed up to be part of her Alloderm study. It's a random draw as to which patients will have Alloderm and which ones will have the TE. Regardless, my left breast will have a TE because it is not eligible for the study.  I'm hoping I don't get bumped and will be able to have my surgery as schedule . . . but she did say that delays do happen. 

Anonymous

Thanks Mantra

Hope your doing ok sling99?

sling99

formykids, I sent you a PM.

sling99

Just an update. The biopsy in my right breast came back as benign. Yeah! However I am giving some thought to having bilateral mx anyway as a prophylactic measure. It's such a hard decision to make. The plastic surgeon I saw at Sunnybrook is leaving so I got referred to another one at Women's College Hospital who is involved in the Alloderm Study (Thanks to Mantra for mentioning this study so I could ask about it). I met with the plastic surgeon and I think I will sign up for the study. The plastic surgeon said I don't quite have enough stomach fat to do DIEP (confirmed what the first plastic surgeon told me) so it will be implants for me. Questions: If you have a bilateral mx with TE/implants what type of follow up do they give you in terms of monitoring for cancer in the breast? (mammogram, MRI, etc?). What if you have a unilateral mx with TE/implants? Is it just mammogram on normal breast?

Mantra

Sling99 Great news about the biopsy.

PS - If you get to be one of the "chosen ones" who gets the Alloderm and I don't, I'm going to be pissed at you.

As for followup, my first surgeon told me I would be having annual mammograms. She said that even with a mastectomy, some breast tissue is always left behind and a mammogram is necessary. She was not overly fond of MRI because of the false positives. However, I will have a Breast Screening Gamma Imaging (at my own expense) when I return to the US each year (it's not available in Canada). That said, a different surgeon will be doing the prophylactic mastectomy so perhaps her follow up is different. I have found, that so many things are different depending on which hospital you go to.

sling99

mantra, When will you find out if you get the Alloderm or not?

Mantra

Sling99  - t's my understanding that I won't find out until a couple of weeks before the surgery. Not sure why they can't tell me right away, but I guess they have their reasons.

maria58

Mantra and Sling99

Just wondering if either of you had your surgeries?

I had a mastectomy followed by immediate Alloderm reconstruction at Women's College Hospital in December 2009.  I am part of the study with UHN.

sling99

Hi Maria58,

My surgery is next week at WCH. I am in the study but will be getting the TE. I am so nervous about the whole thing.  What happens on the day of surgery? Who did your reconstruction and how is that going now? Send me a private message if you prefer.

Mantra

Hi Maria58,

My surgery is scheduled for April 16th. I too am part of the study but I won't find out until next Friday if I am selected to get the Alloderm. Are you happy with your results?  

maria58

Yes I am very happy with my results. 

Unless you look very hard no one can tell.  Even nude the you only notice a slight difference. I was able to keep my nipple.  My PS says that I will have a difficult decision to make if I want a touch up job, not a lot to touch up.