Breast obsessing

[mlp123]

I am new here, but not new to health anxiety. I have a number of medical issues that are real, and a number of things I obsess about. I have been in therapy for the last two years, and I have a history of trauma, so that has been the focus of the therapy (not CBT as much, although my therapist does help with the anxiety somewhat).

I did not have a mammogram until I was 42, because I was still breastfeeding. In December 2017, first mammogram resulted in a biopsy, it was benign. I had a benign mass removed from a breast when I was in my 20's, plus my mom had breast cancer twice, so my doctor recommended that I see a genetic counselor to determine a plan for breast screening going forward. They recommended annual mammograms and annual breast MRI's (mammograms in January, MRIs in June). My second mammogram in January 2019 resulted in a callback and an ultrasound, which was traumatic- they let me sit there for three hours before telling me it was just a shadow or breast positioning, and they were just making sure it was nothing. I decided to change to a different facility for screening going forward. I had my first breast MRI in July of 2019. They saw a suspected benign fibroadenoma. They recommended following up with an ultrasound in 3 months. At the 3 month follow up in October, they said it looked exactly the same and that it would be ok to wait and ultrasound after a period of time. My own doctor said I should just biopsy it so I wouldn't have to worry about it. (HA). I had the biopsy November 1st, it came back as benign- but when you read the pathology report, it says the sample was "scant". Due to my continued anxiety, plus a weird thing on my left breast that is like a plugged milk duct that won't go away, I saw a breast specialist in late November. She said that she thinks I should stop the MRIs util I am 50, because they will just keep finding things to biopsy, and that she never would have recommended the biopsy in the first place, as it should have just been followed by ultrasound. She said the duct thing is a montgomery glad that I should leave alone. She said if I switched my screening to the university hospital where she is based, I can have my mammogram results at the time of screening- no more waiting for call backs. And she said she does think they missed the thing they were trying to biopsy, and she would recommend moving my mammogram to March and doing an ultrasound of it at that same time. So that is my plan.

Sorry this is such a long explanation- but now to the point of my post. While all of this was happening, something sort of snapped in my brain and I decided that I will have breast cancer any minute. Specifically inflammatory breast cancer. I have had my breasts clinically examined probably five times in the last year. Nothing was felt that was concerning. I have recently been diagnosed with pernicious anemia, and the B12 injections are resulting in TONS of acne. One spot showed up on my left breast, I ended up having it punch biopsied and another spot removed. The biopsy showed it was an inflamed hair follicle. Against the advice of the dermatologist (who did it to reassure me), I basically had a zit biopsied. And now I have another one. All of the breast symptoms (except the ACTUAL fibroadenoma) are on my left breast. I am feeling and checking the new spot all day every day. Putting acne medicine on it. Taking photos of it to see if it has changed from day to day. I am hyperaware of every breast sensation, and feel the left breast is itching. I had a reaction to a new deodorant, and there is still itching mostly in my left armpit. I am thinking about it all day every day. I am still parenting my three kids and doing things, but it is always in the back of my mind. It is taking everything I have to not contact my dermatologist or the breast specialist about the itching or the new red spot (which is clearly acne, my husband agrees, my rational brain agrees). I will have the mammogram and ultrasound March 3rd. I keep telling myself I can always call a doctor if I objectively need to, but my symptoms are very mild/ minor right now, and do not suggest inflammatory breast cancer. My symptoms are always worse with the left breast, which feeds my anxiety. Aches, etc. that are cycle related.

I need a new strategy or plan. I was previously a mental health professional, but that has not helped me with my own issues. I am taking xanax as needed, but would prefer to figure this out without medication. It is fairly debilitating at this point. I know my story is not at all unique, just wanted to share and see if I can connect with anyone in a similar situation.

[Carys]

Wow, thats a very full breakdown of the situation, and one that I find very interesting. Essentially you have been made hyper aware due to the number of checks, tests and biopsies that have taken place all making you feel far more at risk than you probably are. I will be back to reply in the morning in more detail, as its late here in the UK at the moment, but the major point I would make is that yearly mammogram and ultrasounds are more than sufficient to pick up very early stage and very effectively treatable BC IF it ever occurred. I have had BC myself and following it I have yearly mammograms for 5 years as that is considered good practice not to be earlier (risk of radiation) and later (could allow it to become a later stage cancer if a recurrence). Your plan for your continued care with the new university hospital sounds ideal, practical and reassuring. You are so close to being able to deal with this, you quote here all the rationality that is helpful e.g. about the acne. Anyway, I will return am with some more thoughts......but I will say that breast cancer fears feature highly on the list of fears on the health anxiety side of this forum. There are almost daily threads started about it, and I'm sure you will find quite a few to look at through doing a search.

[mlp123]

Wow, thats a very full breakdown of the situation, and one that I find very interesting. Essentially you have been made hyper aware due to the number of checks, tests and biopsies that have taken place all making you feel far more at risk than you probably are. I will be back to reply in the morning in more detail, as its late here in the UK at the moment, but the major point I would make is that yearly mammogram and ultrasounds are more than sufficient to pick up very early stage and very effectively treatable BC IF it ever occurred. I have had BC myself and following it I have yearly mammograms for 5 years as that is considered good practice not to be earlier (risk of radiation) and later (could allow it to become a later stage cancer if a recurrence). Your plan for your continued care with the new university hospital sounds ideal, practical and reassuring. You are so close to being able to deal with this, you quote here all the rationality that is helpful e.g. about the acne. Anyway, I will return am with some more thoughts......but I will say that breast cancer fears feature highly on the list of fears on the health anxiety side of this forum. There are almost daily threads started about it, and I'm sure you will find quite a few to look at through doing a search.

Thank you so much for your response! Yes- I think that I do feel more at risk than I am, you are exactly right. I have more going on than just the breast stuff (although the breast stuff is most significant at this time), but I think the mix of actual issues and imagined potential issues is even enough that it has totally knocked me off course. I managed my anxiety primarily with exercise for a long period of time, and then I got very sick and was diagnosed with B12 deficiency, and have only been able to recently resume exercise (my legs and feet were numb until I had B12 loading doses). It became incredibly clear how much the exercise was helping when I could no longer do it. I am spending all day with my rational brain and irrational brain fighting- being itchy doesn't mean cancer (rational), but why am I so much itchier on my left side (irrational). That is acne on my breast, vs. why have both spots been on my left breast? Breast pain is rarely indicative of cancer, vs. how can there really be this many issues in one breast with nothing serious going on? I have had a breast MRI in the last six months, plus many provider exams, and a biopsy, vs. inflammatory breast cancer is hard to detect and they missed it. I really do have a lot of insight, but WOW, my brain is very tricky. I am trying to just push through, but I think I need to figure out more concrete plans and strategies. Right now I am about to go buy some new free and clear detergent, dryer balls, and lotion for itching, which is probably one thing I need to do to address symptoms. Thank you again for reading my post and responding.

[Carys]

Yes, you do have a lot of insight - you are very aware of the triggers, the rational, the irrational and yet the feelings are remaining.

Firstly, the fact that issues appear to be in the left side only, the acne etc. This is quite an odd thing as I've heard of this, and I only have an annecdotal response to this about myself and many other women. I started a few years ago only getting breast pain cyclically (if you can imagine as a close to menopause women the cycles are erratic and range from 64 days to 10 days !) in the left side. This was not something I have ever had before, always both sides affected. I was on a meno forum at the time and mentioned it - there were SO MANY other women who said all their breast issues were only on the left side ! Now, I don't know why this is, or why it appears so common - could it be related to blood flow, or activity of nodes is higher on one side or or or.....I don't know the answer.....but I know that to hear you say 'only the left' was something that I recognised. I am interested also in the fact that you are 42 years old, and with perimenopause sometimes lasting up to a decade for some women, and full meno average being at 50 years old - so my question is have you also noticed any cycle changes or changes in your period symptoms ?

Yes, I've heard that inflammatory breast cancer can be heard to detect in early stages, and I think the fact that you've picked this much much rarer cancer type is interesting as it would indicate that you are probably able to rationalise the symptoms better in the more common cancer types. You will know that IBC is fairly quick progressing, often much quicker than other cancer forms. Very early stage IBC might be hard to detect, but if it was 6 months ago you had the MRI and you think you had very early IBC then (with your illogical side) then by now it would be far more advanced and you would more than likely have the red swollen skin and exceedingly obvious skin changes. By the way, acne is not a symptom of IBC. ;o)

You said that you'd had genetic counselling, what was determined during that ? Were you tested for the BRCA gene fault ?

I think, and this might be painful for you to hear, part of how you deal with this needs to be an acceptance that with 1 in 8 women having a chance of BC in their lifetime, there IS a risk for each and every person . None of us know the level of risk, not me or you or the person next door. However, the point about the regularity of your testing, which is very detailed and rigorous, would certainly be in the timeframe to allow for very early diagnosis and effective treatment. That is the other factor to concentrate on - very effective and successful treatment for the vast majority of women. I was astounded seeing some of the stats for BC treatment that for many women they basically return to the risk level of the general population without BC very quickly after treatment. For hormone receptive BC forms, the chances of having no recurrence in the 5 year period after treatment is incredibly high. Late diagnosis and rarer forms (like triple negative) of course have different stats. I think one thing you can work on is - Acceptance that you have no control, and no guarantees of anything in life. None of us do. This has been critical for me in my recovery period. You also need recognise, well its my opinion, that previous testing you have experienced sounds very over zealous. Its hard to reverse that feeling of risk, but I think a couple of years with your new consultant and discussions with her will help - time does help.

You might not be able to guarantee or control negative bodily changes - but - you can trust in medicine, medical professionals and screening. All these can provide a bigger feeling of security that IF anything occurs it will be found and dealt with within 'good practice' timeframes. BC, of all cancers is one of the most treatable, and best understood, luckily it is also usually very obvious and importantly is contained in early stages in the breast. I have been aided in my ability to cope also by seeing and knowing SO MANY women who have had this cancer type, and all infact I was treated with in my local support group are still fine and well. There are of course 'some' horror stories - but once you enter the world of treatment for BC you realise that 'death sentence' is not the actual outcome for like 97 percent of people. I know people who are stage 4, with secondaries here there and everywhere who I've known for years, some of whom have lived with cancer for 15 years. They can't be cured, but they can be treated. There are astonishing changes in cancer treatments happening every single year, with the most exciting currently being harnessing the immune system. There are new drugs released every single year based on trials and things are changing very fast at the moment - this gives hope. Due to very high funding for this cancer type, and very good awareness of professionals, outcomes continue to improve. I think , and I hope, this helps removing some of the fear of it ever happening if you can rationalise the 'and if it does actually happen' scenario- it feels painful at first emotionally but if you realise that stats and doctors and modern medicine are very much on your side that can help.

Your level of vigilance needs to drop from obsession to healthy awareness. I can say to you that IF something does appear, and something isn't right - you will know. You'd not be questioning and anxious about acne wondering if it might indicate something, you would know. Limit the checking you are doing, if you are doing manual and visual examinations - not more than every 4-6 weeks. This is the only safe thing to do - any more regularly than that and what is normal for you won't be know, and changes won't be noted. Rather like when you see someone you haven't for a few months and you see they've lost weight, but if you saw them each day you'd not noticed. One final thing - there are thousands of women diagnosed each day worldwide. Infact I've just looked up the 2019 stats for the US and is says over 268,000 last year. I don't say this to scare you, but to remind you that these women aren't dropping like flies all around you. If they were 1 in 8 women would be disappearing and you'd see that clearly around you. Where are they ? Those from previous years who were diagnosed ? -treated and getting on with their lives. Its amazing the number you come across who say 'oh I had BC 10 years ago' after you mention you have had it too ;o)

I hope some of this helps.

[mlp123]

I totally agree with everything you have said! I have picked inflammatory breast cancer to focus on precisely because the survival rate is low(er), it is hard to detect, etc. I don't think I had it when I had my MRI in July of last year- I "think" (fear?) that it would have developed since then. I am at a place where possibly I am potentially not *as* afraid of regular breast cancer. I guess I feel it is likely I will get it at some point. My health anxiety knows that I am not as afraid of it, so it is raised the fears of inflammatory breast cancer. The funny thing is that I am barely giving any thought to the actual thing (probable benign fibroadenoma) that I am actually following and had the botched biopsy of. It is all the weird twinges, aching, itching, spots, etc with the left breast that I can't stop focusing on.

During genetic counseling, it was determined that I didn't need to be tested for the BRCA gene, I think because there is no significant history of breast cancer in my family other than my mother, who did have breast cancer twice but post-menopause. And I knew her type of cancer, which I gave to the genetic doctor, who said I didn't need to be tested. The breast specialist also said I didn't need to be tested. I have to go with that, or I will start a whole other anxiety thing. THe genetic counselor was just to determine the recommendation for screening based on my risk, family history, breast history, pregnancy and breastfeeding history, and he recommended yearly mammograms and yearly MRIs. And now the breast specialist is saying wait on the MRIs until I am closer to 50. I am actually 44 now, as my first mammogram was two years ago. I am probably perimenopausal. To complicate things (and add to my traumatic medical story of 2019), I had a random abnormal pap smear (abnormal cells, but HPV negative, probably due to inflammation or ?). In the course of exploring that, I had a D&C, colposcopy, hysteroscopy, and at the last minute, a uterine ablation. That is all fine, except it didn't occur to me that with the uterine ablation, I would lose the cue of having my actual period- it makes breast changes harder to explain and track, plus of course figuring out actual menopause.

As far as knowing when something isn't right, I no longer trust myself. I really feel that the sensations in my left breast are alarming, but I have now talked to so many doctors about them, and certainly have had so much screening, I think I have to recalibrate. I don't actually examine my own breasts- because I can't even imagine how I would react to every little thing. I have dense, "busy" and lumpy breasts, and I think I would not be able to sort out normal from abnormal. I have had enough screening and clinical breast exams by providers, pretty much monthly, so it is probably ok.

I feel crazy, I feel like I am driving my husband crazy, I am missing out on being present with my kids. All things that people suffering with health anxiety post, I know. I am disappointed in myself for not being stronger. One of my daughter's teachers is being treated for breast cancer right now, and still teaches every day. I don't even have breast cancer (that I know of) and my functioning is impaired.

Again, thank you for your response. It does help. It also helps just to share it somewhere and process things outside of my own head!