Shortly after I was diagnosed I heard that a friend of my sister was about to undergo a single mastectomy. At the same time, I met a lovely lady where I live who had also been diagnosed and was due to undergo a double mastectomy. We are all similar ages and mums of similar aged children. But as is the case with breast cancer, our cancers were all different and thus our treatment plans were different. Whilst I was spared losing my breasts, the friend of my sister and my new friend have undergone their mastectomies. Both of these amazing ladies have very kindly answered some questions about their mastectomy experiences.
There are all sorts of variations for a mastectomy, and your experience will be personal to you (and to some extent depend on where you have surgery). If you are due to have a mastectomy, I hope that this Q&A may answer some of the questions that you have and give you some idea of what to expect. It could act as a starting point for your reading up about a mastectomy (and I have put in some links to further online information about mastectomies at the end of this Q&A).
1. What were the different types of mastectomy that you were offered?
S: I am quite a slim build so the only option was expandable implants. I don’t have enough fat on my tummy or back, and despite lovely friends jokingly offering theirs, your body has to use your own.
A: Breast tumours can be surgically removed by wide local excision (breast conserving surgery), quadrantectomy where a larger section of the breast is removed, or mastectomy where the whole breast is removed.
2. What tissue is removed by way of a mastectomy?
S: As much breast tissue as possible is removed. Nipples can be conserved in some cases but then there is a higher risk of recurrence. They can never remove all the breast tissue because it is like little fibres into the skin and muscle around it.
A: Wide local excision aims to remove the cancerous lump with a small margin of clear tissue around the edge, whilst preserving the remaining normal breast tissue. Quadrantectomy removes a larger section and the remaining tissue is preserved. Mastectomy removes all the breast tissue, usually including the nipple. The skin is sometimes spared to allow for reconstruction.
3. Are your lymph nodes (under arm) always removed with a mastectomy or only if the cancer has travelled to the lymph nodes?
S: No not always. It depends upon the results of the sentinel node biopsy (the test to see if breast cancer cells are in the lymph nodes). In my case a sentinel node biopsy of 5 nodes on the left side confirmed cancer there, so during my mastectomy a full lymph node clearance was done on the left. When they discovered cancer in the right breast after the mastectomy (by way of the pathology tests) the nodes on my right side were then removed in a subsequent surgery as a precaution.
A: Axillary (armpit) lymph nodes will all be removed during mastectomy if they have been affected by the cancer.
4. What is left after the mastectomy?
S: I had breast implants before my diagnosis and after my mastectomy there is now just a layer of skin over my existing implants. The appearance is quite rippled. My understanding is that this can be smoothed out later with fat fillers. Although for me this isn’t a high priority to be honest. There are horizontal scars about 10cm long across both breasts where the nipples used to be. There will still be some minimal breast tissue fibres, as noted above, but they do not routinely do mammograms after a mastectomy.
A: The skin will be flat to the chest wall unless immediate reconstruction is carried out at the same time as mastectomy.
5. What happens to the nipple? Is it removed?
S: Not always. If the tumour is far enough away then nipples can be conserved. Many women go on to have their nipples tattooed back on.
A: The nipple is usually removed along with the breast tissue.
6. What are the reconstruction options when having a mastectomy?
S: You can have a flap from your back (skin, fat and muscle), or fat from your tummy (DIEP), or an implant (usually an expandable implant if you are still due to have radiotherapy). The implants are part saline, part silicone. A “button” port is put in place under your skin at the same time as the implant to inflate the saline section as required. These implants can be left in place for a number of years, or replaced at a later stage with full silicone. Radiotherapy can affect implants by hardening the scar tissue around the implant. However radiated skin cannot stretch, so an implant after radiotherapy is not considered usual. One would have to wait a number of years for elasticity to return to the skin. It is worth noting that your reconstruction options are sometimes limited by what your hospital offers.
A: There are lots of options: Reconstruction using silicone or saline implants held in place by a tissue matrix (a ‘hammock’ made of synthetic or pig-derived material): Reconstruction using fat and muscle tissue from another part of your body (flap surgery) e.g. lower abdomen (DIEP), back (LD), thighs (TUG) or buttocks (SGAP). Some women choose to remain flat and use a prosthesis.
7. Can you have breast reconstruction during the same operation as the mastectomy, or are they carried out under separate operations?
S: The decision of whether to carry out both the mastectomy and reconstruction in the same surgery depends upon a number of factors: personal choice, what is offered in your hospital, the surgeon’s ability, and risk of length of surgery to the patient.
A: Sometimes it can be done at the same time, but you may be advised to delay the reconstruction if you need to have other treatment such as chemotherapy.
8. What is it like upon waking up from a mastectomy operation?
S: Saying goodbye to your breasts is almost as traumatic as your hair. They are part of what make us who we are. But surviving this terrible disease took over as priority for me and I was happy to have them gone if it meant being here a few more years for my children. I am sure it affects everyone differently, for me it was a relief as surgery meant the cancer is gone. When you wake up you will have a morphine drip attached with a clicker to administer pain relief yourself. The quicker you are able to move on to the codeine, ibuprofen and paracetamol will help as you can go home with these. I believe they can also send you home with liquid morphine. It can make some people feel dizzy as it is an opiate. I stopped taking it the second day after surgery and as long as I kept up with the codeine etc. mix, the pain was not too bad. The hospital give you excellent exercises to do (to ensure that your mobility in your arms comes back) which I followed religiously, and these are followed up by the nurses at home team. This definitely helps recovery and mobility. You also can’t move on to radiotherapy until you have full movement, so its worth working on these.
A: You are likely to feel very groggy from the anaesthetic and require regular pain relief. You may have drains in place, dressings, and experience some swelling. You may feel a wide range of emotions, from sadness to relief and many in-between. You will be checked regularly by the nursing staff until you are ready to go home.
9. Do you need to have a drain after a mastectomy and if so, where is it and how long do you have it for?
S: Drains are from each breast and from lymph node surgery area. Lymph drains are usually in for longer. My first breast drain came out after 2 days, the other 2 drains (one breast and one lymph) were removed by the wonderful nurses at home team once there was less than 50ml per day draining. This is individual to each person, it can be a week or longer. A drain bag (Drain Dollies do great ones) was essential as the bottle is quite big. Alternatively the hospital had bags they could give you to use, or even carrier bag would work, although a long handle over your shoulder is useful to free up your hands.
A: You are likely to have at least one drain after the operation. This stays in place until only a minimal amount of blood and fluid is draining from the wound site. This may be from a few days to over a week. You can usually go home from hospital with drains still in situ if needed. You may also have drains in other areas if you have had reconstruction using flap surgery, for example in the abdomen. Breast drains are usually in the side of the breast near the ribcage.
10. What is the recovery from a mastectomy like? What sort of issues do you encounter?
S: Every day is better, in terms of pain and movement. If you overdo it, you will be sore the day after. No repetitive movement or heavy carrying.
A: This really depends on what surgery you have and whether there are any complications. It may be helpful to contact other women who have been through the same type of surgery to ask about their experiences. Breast Cancer Care and other organisations have chat forums for this.
11. How long until you were back to driving and normal(ish) routine after a mastectomy?
S: On average it is 3-6 weeks. The type of reconstruction involved will influence this. In my case with implants that were left in place, I was driving after 2 weeks.
A: This depends on your healing and arm movement. It is best to check with your surgeon when returning to driving would be appropriate. You will also need to check with your insurance company whether they have any post surgery specifications. Many women will be back to driving after 6 weeks.
12. How long does it take for your breast area to heal from a mastectomy?
S: My scars are healing well but still raised and tender, I am now a month post surgery.
A: Again, this depends on the type of surgery and reconstruction and varies from approx 6-8 weeks with implants up to 8-12 weeks for a DIEP flap.
13. What are the common side effects from a mastectomy?
S: There is risk of infection and the wound splitting open. Shooting nerve pain down my arm from the lymph node removal was by far the worst. Dressings are removed a week later at an appointment with the surgeon. With hindsight I would insist on steri strips and a new dressing for at least a further week as my lymph surgery site did split open.
A: Common side effects are numbness to the whole breast area, armpit and down the back of the arm (due to nerves being damaged), seroma (fluid build up around the wound site), stiffness to the arm and shoulder, some pain and discomfort. These will usually resolve over time although the loss of sensation can be permanent.
HELPFUL RESOURCES AND MORE INFORMATION
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