At a glance
- Ask how long the surgery will take.
- Ask what risks there are.
- Ask how much of the breast is going to be removed.
- Consider and ask if it is pertinent to remove both breasts.
- Find out how long the hospital stay is likely to be.
- Establish where the surgery will take place.
- Ask who will perform the surgery.
- Find out the surgeon’s success rate and how successful it’s anticipated to be based on your partner’s cancer profile.
- Ask about reconstruction, noting that it’s neither compulsory nor strictly necessary.
- Will reconstruction be done immediately after surgery or later?
- What type of implant will be used?
- How long will recovery take?
- What restrictions will there be? For example, driving.
- General dos and don’ts before, during and after surgery?
- What bra is needed post-surgery and is it required for hospital discharge?
- Ask if your partner should stop or start anything, such as medicines or food.
Jen’s cancer initially presented in her left breast. It was a 49 mm tumour which had metastasised to the lymphatic system under the arm – before the surgery it was unclear how many lymph nodes were affected, just that ‘at least one’ was. The first plan was to completely remove the left breast (called a mastectomy) and reconstruct it (should Jen want reconstruction), as well as ‘sweep’ (ie, remove) as many lymph nodes as required (read: all of them under the arm that the surgeon could find) by tunnelling down through the mastectomy incision, which would help limit the number of scars.
Because Jen’s cancer was picked up due to her cysts and the cysts reoccurred on a regular basis, an argument was made (by Jen and me) to remove the right breast electively (by choice) as leaving it would directly impinge on Jen’s quality of life. That is, regular false positives, constant worry of whether the cancer had formed in the remaining breast and, of course, the worry that any tumours that might form could be missed by inattentive people no doubt annoyed by Jen constantly appearing at the breast clinic to check every lump that appeared.
We were advised by the oncologist that the surgeons at Peterborough may be reluctant to remove healthy breast tissue. This got our backs up somewhat but we presented our case logically and calmly. The oncologist agreed to support our position as there was a clear argument for improved quality of life and Jen was referred to a psychologist for mental health checks to ensure she was able to make the decision and that the decision was rational. Fortunately, reason, logic and scientific rigour prevailed and it was agreed that Jen should have the bilateral (double) mastectomy. She also wanted them to be reconstructed and this was factored in along with the lymph node sweep.
The surgery was to take an estimated 7 hours.
To keep myself grounded, I reminded myself (and Jen) that while there is an element of risk – particularly where a general anaesthetic is in play – these types of surgery are pretty much routine nowadays. Consider the number of women who have elective cosmetic surgery to ‘enhance’ their breasts (in either size direction). The surgery is well tested and pretty much commonplace today.
That’s not to say Jen and I weren’t afraid – what rational human being wouldn’t be in that situation? But I didn’t voice my fear on the lead up to the op because I didn’t want Jen to be any more frightened than she already was. I opted for a calm, reasoned demeanour – though I’m sure she saw through it. She does the same when we’re flying abroad – that shit terrifies me.
To know what to pack for the hospital stay, see the ‘Lists’ section of this book. Hopefully it’ll save you some mental worry knowing you’ve got everything you need, leaving you head space to be in the moment with each other. That’s the plan, anyway.
I spent a fair amount of the day doing stuff to keep my mind occupied. This consisted of console gaming, sleep, online window shopping and eating. It was a massive relief to see Jen on the other side of the operation, but she was laid low. She came out of surgery and woke to…considerable pain, which was eventually controlled with fentanyl.
Besides the actual chest wounds, she also had three drains in – one for each breast and one for the lymph node sweep site, plus two vacuum dressings on each breast, each of which had a pump with a vacuum tube. In total, there were five tubes hanging off Jen which, besides three being stitched into her, proved to be a real hindrance. Your instinct will probably be to help your partner with the drains so she can go to the toilet. Let your partner guide you as to how much help she wants or needs. After all, when you’re not there, she’s still going to need the toilet so ideally she needs to be able to operate independently of you. I know it’s difficult, but you’re helping her more by not helping.
I took regular photographs of Jen’s scars and breasts in general so we could keep track of changes over time and I’m glad I did. We were able to track the healing process of a particularly troublesome wound that took about 6 months to heal. It was also useful to see the change in skin tones during and after radiotherapy. But more on that in the ‘Radiotherapy’ chapter.
Types of surgery
There are numerous types of surgery for breast cancer
Also known as a partial mastectomy, the aim is to spare as much of the breast as possible. However, how much tissue is removed will depend entirely on the placement, size and spread of the tumour, as well as the surgeon’s decision on the day. Usually the shortest operation and thus the lowest risk and shortest recovery time. Can sometimes be performed on an outpatient basis and thus not requiring overnight stay in hospital.
Removal of the entire breast. Higher risk than the lumpectomy, with longer recovery time and requiring overnight stay.
Nipple sparing mastectomy
Removal of the breast’s underlying tissue, leaving the skin and nipple intact.
Skin sparing mastectomy
Removal of the nipple and breast’s underlying tissue, leaving as much skin as possible.
Also known as a double mastectomy, entails removal of both breasts. Higher risk than the mastectomy, with longer recovery time and requiring additional overnight stays in hospital.
An optional procedure usually involving silicon or liquid inflatable implants or tissue grafted from the tummy or back. Can be performed immediately after the breast removal surgery or at a later date. Additional follow up work can be performed at later dates to further correct shape and size.
A number of options exists for instances where nipples are removed. Can be stick on nipples, tattooed or shaped using remaining breast tissue.
Sentinel node sweep (removal)
Removal of lymph nodes – ideally removing infected nodes – which are biopsied to gauge how far the cancer cells have spread.
Dealing with side effects
The following is a non-exhaustive list of possible issues arising from surgery. Note that in many or most cases there’ll be very little you can do to fix the issues beyond providing emotional support and flagging them with the breast care team. If you’re able, you may be needed to do home dressing changes – I did. Jen and I found it useful to take pictures of the healing process to track changes in wounds, bruising and so forth.
As I’m sure you know, nerves run throughout the body. As the size of the surgery increases and the area of tissue being removed grows, so will the likelihood of nerve damage. This can result in tingling, ‘jangling’ feelings in the affected areas, as well as electric-like pain, pins and needles or simply no feeling at all. In many cases some feeling may return but there’s no guarantee of this and much will depend on the extent of the nerve damage. Of course, the surgeons will do their utmost to minimise this damage, but it’s simply unavoidable where this type of surgery is concerned. The same applies to lymph node removal.
This loss or change in breast sensation can have a direct impact on how your partner feels about herself and can understandably take a long time for her to come to terms with. This can result in a decreased desire for sexual intimacy (see chapter: Intimacy), feelings of being less than a woman or generally unhappy. While it’s not the best comparison, I think of it as akin to having testicles removed. I’m pretty certain I’d feel differently if that were the case for me.
Loss of nipple(s)
It’s quite surprising how much importance we men attach to the nipple. On a man I think they’re ‘meh’ (though millions of people may disagree!) but on a woman I think they’re innately feminine. I think perhaps it’s because they’re used to nourish our offspring. Nipples are bundled with nerves and the loss of one or both nipples will result in decreased sensation for your partner. It may also change the way your partner feels about herself.
The surgeons will do their utmost to keep scarring to a minimum. They will use internal stitching and even glue as part of the repair procedure. Despite this, scarring is almost inevitable. The extent of the scarring will depend entirely on the procedure being performed. Obviously, a small lumpectomy is going to have far less scarring than a double mastectomy. The surgeon may be able to give you a good idea of how much scarring is anticipated once the surgical procedure has been decided, though there are no guarantees because the surgical ‘strata’ can change based on the surgeon’s discoveries once inside the breast.
Swelling can appear at any part or parts of the surgical site. If it’s not picked up by your partner’s primary care providers – usually the breast care team will check for swelling and fluid build-up – be sure to bring it to their attention. While it can be perfectly normal to have swelling and inflammation in the short term, it can also mean infection which needs to be treated with antibiotics.
For sentinel node sweeps and mastectomies it’s normal to have drains. These are surgical rubber tubes which are inserted into a wound to drain off any post-surgery fluid and prevent build-up. Once your partner is discharged from the hospital, you or she will need to monitor the fluid quantity and possibly change the bottles. The drains don’t usually hurt but they do hamper natural movement.
It takes quite a lot of energy for the body to heal, so it’s very likely your partner is going to be zonked out on a regular basis. Make sure she gets a well-balanced diet with plenty of fresh fruit and veg, as well as protein. This will help keep energy levels up without spiking and will also aid the overall healing process.
Of course there’s going to be pain and it’s different for everyone as we all have differing pain thresholds. But not necessarily just the usual brand of pain. Besides soreness from the incisions and bruising caused directly by the surgery, the damage to nerves can result in anything from pins and needles, through burning, shooting, stabbing and jolting ‘electric’-like pain. Be sure to keep a note of your partner’s pain levels. Your primary care team will be able to provide your partner with appropriate medication if required.
There is always a chance of bleeding after surgery – sometimes it’s normal, sometimes it’s not. It’s always best to get it checked out until there’s certainty either way, particularly if bleeding starts when there wasn’t any previously.
You and your partner need to look out for the following:
Pain, swelling or warmth in your partner’s leg.
Red or discoloured skin on your partner’s leg.
Veins sticking out.
Shortness of breath, painful breathing or coughing up blood.
Sudden chest pain not directly relating to surgical incisions.
Your partner is going to be laid up for a while after the surgery. During this time, she will probably be advised to wear pressure stockings to help prevent blood clots. Make sure she wears them.
As with any surgery or open wound, there is always a risk of infection. It’s important to keep the wound clean at all times. Follow-up care with the breast care team will ensure the incisions are kept clean but do keep an eye out for redness and ‘tracking’ where infection, usually in the form of discolouration, is moving away from the initial wound site.
You’re probably familiar with bruising – yellow/red/purple blotches. Keep an eye on them but don’t be overly concerned immediately after surgery as with any traumatic injury to the body, bruising is normal and natural. Obviously flag it with the breast care team if it doesn’t improve. I found it helped to have comparison images to make sure it was going in the right direction.
Fluid (Seroma) build-up
Nature abhors a vacuum and so does the body. Essentially, anywhere in the body when tissue has been removed can result in fluid build-up. The drains that the surgeon inserted should handle this and the breast care team will check for build-up on your follow-up visits. However, do bring it to their attention if you or your partner notice any fluid collecting. It could mean the existing drain isn’t doing its job properly or a drain is taken out too soon and needs to go back in.