Learning About Breast Cancer
I had excruciating pain with the first mammograms I had a year after my lumpectomy. I have dense breasts which were tender even before breast cancer. I have a small seroma [fluid filled sac] under the surgical scar that causes shooting pain, even with mild jiggling. Then there is the scar itself, which remains tender. My skin can also break if put under pressure. Many women with skin conditions like dermatitis, eczema or even just thin, ageing skin have told me mammograms are much worse for them.
By the second year, when I came up for second mammogram, I was determined not to tortured like that again - ever. If you are already worried about the pain, then to me that is a good indication you may already have tender breasts and pain issues - so you deserve to have that respected and taken seriously. Many women sail through their post breast cancer surgery mammograms, but I urge you strongly to listen to yourself, listen to your own knowledge of your body and make plans based on actively alleviating your concerns. After all - some people are capable of cutting off a pinned arm with a blunt pocket knife without no pain relief- but it would not be sensible for those of us who know or strongly suspect we could not do that, to live our lives built around the assumption we too are capable of it! You need a plan:
1. Write to the head partner of Managing partner of the imaging clinic you will attend 6-8 weeks in advance of your mammogram. Clearly state your concerns including any history of pre existing breast tenderness, easy bruising,slow healing, seromas, scar management problems, existing pain post surgery as well as any other problems with pressure or mammogram techniques pre breast cancer. State you are very concerned about pain levels and ask them if they are willing to provide you with EMLA cream to rub on an hour or so before the mammogram. and or an injection of lidocaine before the compression. Ask them to reply to you and get this sorted out well before the mammogram date. I was able to get mine to agree to both.
2. I also went to the GP and explained the problem - so I got a script for a muscle relaxant [Valium] which I took a few hours before the mammogram. I also had a stronger pain killer called Oxycontin 5mgs left over from surgery recovery period, so half an hour or so before the mammogram, I took one of those as well. The medication meant my muscles were not tensed and I was relaxed from the Valium, and the Oxycontin is an effective pain killer especially for the deeper internal structures. The EMLA cream numbs the skin on the breast. The lidocaine numbs the fatty structures in the breast. It is a multi pronged approach to addressing the different levels of pain from mammograms.
3. When I arrived at the clinic I had been making this arrangements with, I again raised the issue and the agreed solution with the operator. There is always a risk the operator has not been told or communication systems went awry. She appeared to know about it, but also my impression was she trying to talk me out of accessing pain relief. I made it clear I was not going to be talked out of it, at which point she called her supervisor to oversight the process. He was the one who also gave me the lidocaine injection - which they normally do not do. The compression also seemed to be less intense - not blowing the blood pressure through top of my head like before - so I think my preparation plan meant they were more attuned to being careful. She was also very gentle. I have dense, larger breasts so mammograms often meant many more images taken and a lot of repositioning, which extended the pain. On my third last mammogram the female operator had been so rough, pulling my breasts this way and that, that she actually tore the flesh where the breast met the rib cage.So I was being imaged with blood dripping on to my shoes! I made sure I told the gentler clinic about that experience, so they understood how mistreated I had been with past mammograms, so they knew why I was insistent.
4. The mammogram at the clinic where I undertook all this preparation was the best I have ever had. So - it worked for me.
5. You may notice many sporting events, if a great big fit male footballer twists a leg or pulls a muscle, the medics rush on to the field and give them as green tube to breathe on. Ambulances in Australia also carry them and use them at car accidents. These green tubes contain aerosolised pain relief. I have often pondered at the sexism here - big, fit male athletes accustomed to pain get this instant form of pain relief yet women who know in their bones a life saving test like a mammogram will be agony or significantly painful for them, are not offered this cheap, effective and easily available form of pain relief. I genuinely believe women's pain is constantly being under-rated, under-acknowledged and under-treated. Society places less value on women's pain as opposed to men's pain and therefore less resources, less empathy and less interest in alleviating it. It is even more noticeable when the pain relief solutions are so obvious, yet not offered.
6. I have met women who avoid mammograms because of the pain and the mammographer professions lack of respect or interest in seriously attending to women desire for pain relief. Really, it is sadistic to behave this way. My view is you inhabit your body for 40,50, 60 years. You know far better than anyone else the tenderness levels of your own breast, as well as your own subjective ability to tolerate pain. There is a massive pain tolerance variation in humans, as well as between women. Red heads are well known for being far more susceptible to pain for example. It should be mandatory for every mammogram clinic to have the woman self assess her own pain history/levels on a scale from 1-10. Any women who report pain sensitivity or past history of mammogram pain above say a 6, should AUTOMATICALLY be offered pain relief options - without the condescending attitude, without any put downs and without value judgements.
I for one am sick of medical staff using the ultra tough, stoic patient as the 'Normal" model on which they base their answers to the questions - does it hurt and do I need pain relief. Doing this is nothing more than lying to patients. The correct response is there is a wide range of responses to the pain from eg., a mammogram, from a zero all the way to someone fainting or screaming. Medical imaging staff obviously need mandatory pain management systems imposed on them and included in all Protocols because frankly, left to their own devices, they can become so calloused by repeat exposure to women's pain, that they simply blank it out or worse still, lie to us so they can get the image and get on to their next job in the least amount of time. Many operators have become highly institutionalised to the point where they deny mammographic pain even exists, or if it does, that it requires any pain relief.
The only way for us to reclaim our bodies and to blast mammographers out of this state of denial about our mammographic pain is to insist our reality gets taken seriously, and insist that proper pain management systems be agreed to and implemented. To wait till a few minutes before your mammogram to raise this with the mammographers is ineffective. They need time to absorb your statements and for you both to come up with a pain management plan you agree to. Or for you to drop them if they won't and go to a clinic that treats women with dignity.
I would also be super careful of any responses that dismiss or play down the pain levels. The experience of pain free or low pain mammograms may well be the genuine experience of 85% of those receiving mammograms, however, for the percentage who are bruised for weeks from mammograms, already have had painful mammograms in the past, have awkward surgical scars, breast seromas or other problems like broken skin or just know you have a low tolerance to pain - THAT is their reality. It is just as valid, just as real. Do not let anyone whose experience their own subjective pain thresholds are low ever convince you that if that is how it was for them, that is how it will be for you too.
Keep in mind - you can also have a dual breast coil MRI instead of a mammogram. It is more expensive, but much, much more accurate than a mammogram. You are not exposed to radiation with an MRI and there is no compression of the breast. The MRI takes longer than the mammograms, and it is noisy, and you may need a contrast dye, but I found all that infinitely better than 99% of the mammograms I had had.
The very fact that you are expressing this concern about this is already a red flag to me and that you have sound reasons for raising this issue, and there may be reasons not shared with or understood by those who sail easily through their mammograms.
Sincere best wishes that irrespective of what path you take - that your mammogram is pain free and that you do not became a member of the group who avoid necessary mammograms because of unattended to pain.