AIBU to question why I can have a boob job but no mastectomy

(16 Posts)
reallypuzzled Fri 11-Jul-14 20:40:08

Hi everyone,

I have name changed for this post due to all the personal information and I am sorry that this has turned out to be such a long post but essentially I am questioning why a woman should be denied the right to have her breasts removed if this will help her psychological well-being whilst breast augmentation seems to be a perfectly acceptable procedure.

Some background info: My mother was diagnosed with advanced breast cancer at the age of 50 and sadly passed away just under 6 years after diagnosis. She had been initially just given 3-6 months to live so we were incredibly grateful for the extra time we had with here, but it was also the most stressful time of my life. I was 21 at the time and as a result developed carcinophobia (fear of cancer). I am 45 now and it seems a bit odd but in the past I never really panicked about getting breast cancer despite my general carcinophobia. I did always think that my mum's illness may put me at a slightly higher risk, but if anything I was more careless than the average woman and did not check my breasts on a regular basis. Anyway, I recently moved abroad where it is normal for woman to have annual check-ups with a gynecologist and it all really started from there.

The gyno did all the usual abdominal examinations and cheerily commented on my healthy looking womb, ovaries etc. She then proceeded to manually examine my breasts and suddenly stopped talking, getting a concerned concentrated look on her face. She then asked me when I had had my last breast ultrasound (obviously never had one before) and then proceeded to do one then and there. The ultrasound showed that I have diffuse fibrocystic mastopathy (lots of benign breast tissue changes with multiple cysts) as well as very dense breast tissue called ACR 4. She told me that none of this is cancer and not to worry about it, but strongly advised that I should have a MMG (mammogram), especially as I told her that my mum's breast cancer had probably been diagnosed late and/or developed out of benign breast changes.

The MMG showed that I have lots of microcalcification but as the radiologist could not see clusters it was classed as BIRADS 2 which means benign. I also had a private MRI (Magnetic Resonance Imaging) which confirmed the diffuse fibrocystic mastopathy and also came back as BIRADS 2. Thought that I could forget about things until the next annual ultrasound, but gyno still felt uneasy about the results due to family history and asked me to go to a breast centre for genetic advice and another opinion on the pictures. The centre did not want to talk to me about genetics (not strong enough case) but did offer to do another ultrasound where they found a BIRADS 3 (probably benign) lesion they wanted to biopsy which turned out to be a benign atypical cyst. Again I breathed a sigh of relief until they told me that they had found microcalcification clusters near my chest wall that needed further investigation. I had to go for further extended view MMGs after which my right breast was classified as BIRADS 4 (suspicious abnormality). I was then advised I should have a vacuum biopsy and if this failed an exploratory operation.

On the day of the biopsy I had to have further MMGs and was then asked to lie on a table where a computer would calculate the exact location of the tissue to be biopsied. I had been lying there for around 30 minutes when the radiologist came over to say that they would probably not have to do the biopsy as the computer had calculated that the calcifications were not at the back near the chest wall but at the front near my skin?! She got another radiologist who did some more calculations and who then advised that the suspicious lesion was indeed on the skin which is harmless and that I could go home but was to come back in 6 months' time for another MMG. I tried to understand the reasoning behind how it was possible for them to misinterpret the location of the lesion on my MMGs but I was not really taking things in due to my mental state (nervous wreck who had not slept the previous two nights ). I also did not really get a satisfactory answer as to why I would need another MMG in 6 months' time if everything is alright?!

So back to my gyno who agreed that my (non) biopsy experience was a bit odd and then suggested that I should get another opinion from a different breast centre. It was then that I asked about the possibility of having a mastectomy, explaining that I would not be able to cope with this kind of stress/uncertainty for the rest of my life. The gyno said that she could understand my fears but pointed out that any health insurance was unlikely to pay for such a procedure as I had not been tested/known to have a genetic mutation to justify such an operation. I replied that I did not expect his and would somehow find the money if it meant that I would not have to have the sword of damocles hanging over my head anymore. She said it may be worth paying for a private genetic test, but also pointed out that a negative test result would not give the 'all-clear' as it was likely that there are still unknown mutations and it would also still leave the problem of my 'difficult' breasts. She then wrote my referral, including my request for a possible mastectomy ...

... which the breast centre categorically refused. No reason given apart from 'we do not remove a healthy woman's breasts'. When I asked 'how come you offer breast augmentation procedures to woman with healthy breasts' I was told that 'this is different'. A further query as to how this is different was ignored. I then asked whether they would consider giving me Tamoxifan as this has been shown in studies to lower a woman's risk of developing the disease and was told 'we do not medicate a healthy woman'. I was then told that annual ultrasounds should be sufficient and no more than a MMG every two years due to the radiation risks, especially to breast tissue of younger women. When I asked whether I should go for the suggested MMG at the other breast centre in 6 months' time I was told that I should do what they told me to do. I then asked if they would be prepared to look at my past MMGs to advise whether they thought that the MMG in 6 months' time was really necessary as I have recently had at least 8 MMGs in my right breast alone I was simply told 'No'. And when I meekly pointed out that they themselves had advised against unnecessary MMGs only a few minutes ago, I was told that 'life is full of risks' and 'you should have thought about this possibility before you went to the gyno for your initial screening'.

After these recent experiences I have thought long and hard about the advantages and disadvantages of a mastectomy and I really feel that for me the way forward would be to have my breasts removed as this would allow me to move on with my life with less fear. I understand that the majority of women would not take such drastic measures and this is fine, but I fail to understand how the medical profession can categorically refuse a woman's request to have breast tissue removed for psychological reasons whilst at the same time happily offering breast augmentations for the same reason. Also, my mastectomy would reduce the risk of disease whereas I believe that some boob jobs involving implants may be harmful as they could increase the risk of missing a cancer (please correct me if I'm wrong).

So AIBU to ask for a mastectomy and WWYD in my situation?

TIA

Infinity8 Fri 11-Jul-14 20:51:00

Yanbu imo. I think their attitude towards you has been awful and I think you should pursue this further because their policy makes no sense. I am sorry you are going through all this stress and I hope someone better informed than me comes along soon.

HuggleBuggleBear Fri 11-Jul-14 20:55:30

I agree with you totally. My mum got breast cancer at 47 (pre-menopause). I read that a first degree relative with breast cancer especially if pre menopause increases your risk. Her cancer returned and she is now stage 4. My maternal grandmother also had benign breast lumps. I was referred to a genetics counsellor who refused genetic testing on grounds not high risk. I sometimes think about an elective mastectomy and ovary removal but I haven't taken it any further as I'm early 30's.
I don't understand why you have had so many barriers when you have had problems albeit benign.
Sorry about your mum.

Thenapoleonofcrime Fri 11-Jul-14 20:57:54

I am not sure what I would do but one fairly obvious course of action to me is to go for BRCA1 and 2 testing- I think one of the risk factors for these genetic mutations is a relative with breast cancer under 50- well your mum would have been under 50 if she had been diagnosed more promptly as by 50 it was advanced. On that basis it would not be at all irrational to have this and I would ask for it to be done- you could have it done privately.

It won't take you anywhere if it is negative, but if positive, although awful, would provide a pathway to prophylatic surgery.

Or you could have the recommended screening once a year or any of the other options they suggest.

It has to be said though, that even if you had surgery on the breasts, there is still some risk of bc in the surrounding tissue and if you did have the mutations then there would still be a higher risk of other types of cancer (ovarian, others).

This must be very stressful for you, it seems an awful lot of procedures in a short space of time, do they have a counsellor there you could speak to about this?

Namechangearoonie123 Fri 11-Jul-14 20:58:21

I think some statistics might help you. Do you know what your chances are of developing breast cancer?

Right now you are healthy and suffering from health anxiety, maybe starting with some proper targeted therapy for health anxiety would be a place to start right now?

Thenapoleonofcrime Fri 11-Jul-14 20:58:45

Huggle I wonder if you have to have more than one relative with an under 50 diagnosis then?

HuggleBuggleBear Fri 11-Jul-14 21:05:07

I don't know they looked at all my family history and said they would need to see more instances of breast or ovarian cancer to demonstrate genetics at play. I asked about going private but she tried to put me off but I can't remember why. It was really frustrating and I didn't feel listened to and was just told I wasn't high risk.

liz5029 Fri 11-Jul-14 21:16:20

Are you in the UK? There are private clinics who will do it, I believe several years ago the price was around 5000 but I dont know if that includes reconstruction or not. I agree it seems mad you can have implants on the nhs but not this

liz5029 Fri 11-Jul-14 21:23:40

Also the NHS does provide double mastectomy's for transgender people, so this is something you should be able to get done via the NHS. However if you do decide to go private, asking around transgender groups is possibly a good way to get a surgeon recommendation

InSpaceNooneCanHearYouScream Fri 11-Jul-14 21:40:57

I think you need treatment for health anxiety, and maybe a genetic test for your risk of cancer, not a double mastectomy

reallypuzzled Fri 11-Jul-14 22:12:28

Huggle Sorry to hear about your mum but I hope that the recent advances will help her fight it. Like you I find it extremely frustrating how the medical profession (apart from my gyno) appear to do everything to put me off pursuing things further.

Then I agree with what you say but I'm not sure if I could afford both genetic testing and mastectomy. Also I would still want to go ahead with the op with a negative test result as it would not provide me with an 'all-clear' (as per my original post).

Name A woman's life time risk of bc is about 10%. For a woman with ACR 4 it is around 5 times higher, i.e. 50%. That does not take into account any family history (don't know how much more this puts me at risk).

Liz I'm actually not currently in the UK but would be happy to travel over for the procedure. Are you sure you can have this done privately if you have not had a positive genetic test result?

InSpace I agree that my level of anxiety is higher than usual but I am also objectively more than 5 times more at risk of bc than the average woman, i.e. I have at least a 1 in 2 chance of getting it in my lifetime.

velocitykate Fri 11-Jul-14 22:42:34

Why is your risk so high? Unless you are proven to have BRCA1 or 2 your risk with having one first degree relative affected is about 1 in 8 (as opposed to a background risk of 1 in 12). Please do bear in mind that all these scans are increasing your risk and a double mastectomy is far from a risk free procedure. I'm not sure you are being terribly objective about this.

liz5029 Fri 11-Jul-14 22:56:45

I'm pretty certain you can get it done, the best thing to do is probably contact a few private clinics and get an idea of if they will do it an prices.

I understand people saying counselling etc is a good idea, but I also know that ultimately ypu should be able to do this if you want to. Its certainly no worse than implants, which have no health benefits

Also this is a bit alternative but look at breastcancerchoices.org - I use their protocol to shrink my goitre and its made a massive difference to my breasts which were very lumpy before and are now much softer, I dont know how open you are to alternative stuff but worth a quick read at least

reallypuzzled Sat 12-Jul-14 00:03:58

Velocity I have been told that the average background risk of getting breast cancer in a lifetime is 1 in 10 and that high density breasts of more than >75% (=ACR 4) increases this risk five fold to 5 in 10 / 1 in 2. It has also been found that the main cause of false-negative breast cancer results is high breast density which means that the screening measures such as MMGs are less reliable for my breasts.

The first degree relative risk is a separate issue and I am not sure myself how much more it puts me at risk. As others have said the age at diagnosis is important as it indicates whether it is pre-menopausal or post-menopausaul breast cancer (pre-menopausal tends to be more genetic based and aggressive). When my mother was diagnosed the doctors said that they suspected she may have had it for a decade or so and as she had just turned 50 this makes it likely that she already had it in her early 40s.

My gyno said that neither my family history nor the ACR 4 on their own are particularly unusual. It is the combination of the two that is not so good.

Liz Thank you for the info.

RuddyDuck Sat 12-Jul-14 00:14:33

My mum had breast cancer aged 36. Her mum also had it aged 50. I went for genetic counselling and was told I didn't qualify for genetic testing because I wasn't in a high risk group. I have very few female relatives on my mums side, so that made a difference.

I have had annual mammograms since the age of 36 though. That has reassured me a bit, so maybe that is one way forward?

reallypuzzled Sat 12-Jul-14 00:52:01

Ruddy If I cannot find anyone who is prepared to carry out the desired op I will be forced to rely on screening but like I said before there is a risk of false negative results with high density breasts like mine.

But what I don't understand: You have two direct line relatives diagnosed with breast cancer at an early age (your mum was actually really young) and you are not considered to be high risk? How is this possible??? And are the MMGs the only thing you are offered or do you get other things done such as ultrasound and/or MRI?

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